MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'crohn's disease'. Sat, 03 Sep 2011 02:06:45 +0100 http://www.medworm.com/index.php?rid=5118642&cid=t_301020_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Fpediatric-physician-joins-collaborative-network-and-sees-improvement-in-his-work%2F2011.08.11 I never thought I’d change the way I practice medicine.  But I recently enrolled as a provider in the Improved Care Now (ICN) collaborative network and I’m already working differently. ICN is an alliance of gastroenterologists and patients working in a new model of pediatric inflammatory bowel disease care based on the analysis of thousands of doctor–patient visits as well as the latest studies and treatments.  Doctors and patients apply this information, experiences are tracked in an open registry, the results are then shared and refined to improve care.  I can see what I’m doing well and where I’m falling short relative to other clinics and pediatric gastroenterologists. ICN is under the direction of Dr. Richard Colletti of the University of Vermont.  ICN is supported by t... Better Health blogs http://www.medworm.com/rss/comments.php?id=5118642 Thu, 11 Aug 2011 16:00:26 +0100 5118642 http://www.medworm.com/index.php?rid=4984451&cid=t_301020_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Fdoes-accutane-cause-inflammatory-bowel-disease-the-evidence-is-weak%2F2011.06.29 At home the kids’ current TV show of choice is How I Met Your Mother, supplanting Scrubs as the veg out show in the evening. Both shows are always on a cable channel somewhere and are often broadcast late at night. Late night commercials can be curious, and as I work on projects, I watch the shows and commercials out of the corner of my eye. Law firms trolling for business seem common. If you or a family member has had a serious stroke, heart attack or death from Avandia, call now. The non-serious deaths? I suppose do not bother. One ad in particular caught my eye: anyone who developed ulcerative colitis or Crohn’s disease (collectively referred to inflammatory bowel disease, or IBD) after using Accutane, call now. Millions have been awarded. My eye may have been caught because of ... Better Health blogs http://www.medworm.com/rss/comments.php?id=4984451 Wed, 29 Jun 2011 17:00:47 +0100 4984451 http://www.medworm.com/index.php?rid=4976058&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fmanaging-job-stress-and-crohns%2F Well…I think that, once again, I am facing a change in my career. Actually, I am not certain where my career is going, but I do know that I cannot continue working in my current position. During October of last year, I was transitioned onto a ‘Proposal Tiger Team’ within my corporation and have been struggling with my work-life balance ever since. The job is intense, stressful, and one of those occupations where, to succeed, you have to give up your personal life and give everything you have to the company. I cannot do that — nor do I want to. Having a chronic disease further limits how much I can afford to give. I actually told my management that I have Crohn’s disease (a career first for me!) and that I cannot afford to work 10- to 11-hour days every day of the week (for w... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4976058 Tue, 28 Jun 2011 15:09:21 +0100 4976058 http://www.medworm.com/index.php?rid=4829306&cid=t_301020_150_f&fid=35777&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FPharmalot%2F%7E3%2FYitdjBO2xI8%2F Hello, everyone, and welcome to the working week. We hope the weekend was refreshing. Now, of course, the time has come to resume the routine of meetings and deadlines. To cope - yes - we are brewing the mandatory cup of stimulation. After all, this is Monday morning. And we know you can relate. So please join us. Meanwhile, here are some tidbits. Have a good one and stay in touch… US Supreme Court Declines To Hear Lilly Gemzar Patent Case (Bloomberg News) EMA Board Fails To Agree On A New CEO (Financial Times) Teva Buys Majority Stake In Japan’s Taiyo Pharma (Bloomberg News) Is Elan A Takeover Target? (The Irish Independent) Florida Man Sues Merck Over Propecia And Loss Of Sex Life (Lakeland Ledger) Sanofi Signs Crohn’s Disease Pact With Glenmark (Pharma Times) Glaxo To ... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=4829306 Mon, 16 May 2011 12:05:19 +0100 4829306 http://www.medworm.com/index.php?rid=4794954&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fmay-2011-how-is-your-crohns-today%2F Hello Everyone! I hope that you are doing well today! It is time for us to have another edition of How Is Your Crohn’s Today?. For those of you who are new to the blog, every now and then I like to check in with everyone for updates and your Crohn’s is holding up. I’ll tell you how I am doing, and you reply in the comments section about your current status. I finally went to see my rheumatologist and did my yearly bone scan. I was reluctant to go because I was so afraid that my bone density would be worse and I have been anxious about taking the Reclast medication again. As I wrote in a previous blog, I have been worried about some of the side effects of the medication. The bone scan actually showed that my bone density improved by 7.2 percent, which is really a lot if you think abo... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4794954 Fri, 06 May 2011 17:59:30 +0100 4794954 http://www.medworm.com/index.php?rid=4684570&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Ffinding-a-work-life-balance-with-crohns%2F Ever since I took this new position within my company, I am having a real problem with my work-life balance. The type of work that I am doing now leads to periods of high intensity followed by a lull, or low-intensity work. My problem arises, of course, when I am in the midst of insane deadlines and mountains of work that has to be done to impossibly high standards of quality. I have no problem doing the work and think that I am becoming quite good at it. The problem is that I give too much to do it. If I had more time to work within a reasonable schedule, then I would love this job and may even want to do it forever. But, it’s not like that. Up until now, I have managed to keep a low profile by doing all of the detailed, difficult work in the background and letting others take the lea... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4684570 Wed, 06 Apr 2011 21:22:21 +0100 4684570 http://www.medworm.com/index.php?rid=4605938&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fprayers-to-japan%2F I just want to take a few minutes away from our usual Crohn’s disease blog topics to send some prayers to the people of Japan. I can’t even imagine what they are going through and hope that it gets easier soon. I also want to send special prayers to anyone who has a chronic disease and has been impacted by the earthquake, tsunami, or nuclear evacuation. It is especially hard for you when you don’t have what you need to be healthy, and I will pray for you and everyone who is suffering. Actually, let’s just take a moment to pray for anyone, anywhere who is suffering! Please, Crohn’s bloggers, send your prayers! Take care, Kelly Support Japan Relief Efforts With Everyday Health and AmeriCares (Source: Life with Crohn's) Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4605938 Thu, 17 Mar 2011 14:06:37 +0100 4605938 http://www.medworm.com/index.php?rid=4592605&cid=t_301020_131_f&fid=34989&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FGeneticsHealth%2F%7E3%2FEp-DUw9o_8o%2F Irritable Bowel Syndrome. Spastic Colon. My large intestine needs to see a shrink. It could use some benzos, or at the very least, Haldol. Maybe a stint in the psych ward. Unfortunately, my colon doesn’t have a separate brain and I can’t take it for psychoanalysis. (I probably wouldn’t want to hear the diagnosis anyway.) Fortunately, my brain (addled and atrophied as it may be) has been able to uncover all the wonders and horrors of dealing with and treating Irritable Bowel Syndrome (IBS). In 1971, I was born a seemingly healthy, properly-pooping nine-pound baby. But things soon changed. In my terrible twos I was at least easily potty-trained. (You couldn’t get this kid on the toilet fast enough.) I skipped the entire Freudian anal-retentive stage. What was going on? Wa... Genetics and Health blogs http://www.medworm.com/rss/comments.php?id=4592605 Mon, 14 Mar 2011 13:58:36 +0100 4592605 http://www.medworm.com/index.php?rid=4512501&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fanxiety-about-testing-medicine-and-doctors%2F It’s that time of year again — time for my yearly bone density check. I am really dreading the bone scan this year, but it is not because the test is hard. It is pretty much one of the easiest procedures that we, as Crohn’s patients, have to take. I am dreading the scan, because I am dreading the results. I just don’t want any more bad news. I don’t want to have to take the Reclast infusion again, and I know that if my test comes out worse, the rheumatologist is going to insist that I do. Recently, the FDA has begun studying drugs like Reclast, Boniva, and Fosamax due to signs that the drugs can cause abnormal heart rhythms. There is also some controversy about whether or not these drugs can actually increase the chance of thigh bone fracture after five years or more. My gen... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4512501 Wed, 23 Feb 2011 22:36:24 +0100 4512501 http://www.medworm.com/index.php?rid=4433206&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Four-bodies-are-only-our-vessels%2F I finally watched the movie Avatar the other night – what an excellent movie it was! I don’t know if you have seen it yet (and I don’t want to spoil the movie for you), but in the future, scientists use Na’vi-human hybrid bodies called avatars. They are operated by genetically matched humans to explore the world of Pandora and to learn about the natives. The main character of the movie is a paraplegic who was offered the opportunity to take his twin brother’s place as one of the avatar controllers. When he first took over the avatar’s body and was able to walk and run again, I could empathize with his joy and elation. What a gift for him to have what he thought he would never have again – even if it was only pretend. As I was watching, I couldn’t help think about my own... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4433206 Thu, 03 Feb 2011 22:48:43 +0100 4433206 http://www.medworm.com/index.php?rid=4429120&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Four-bodies-are-only-are-vessels%2F I finally watched the movie Avatar the other night – what an excellent movie it was! I don’t know if you have seen it yet (and I don’t want to spoil the movie for you), but in the future, scientists use Na’vi-human hybrid bodies called avatars. They are operated by genetically matched humans to explore the world of Pandora and to learn about the natives. The main character of the movie is a paraplegic who was offered the opportunity to take his twin brother’s place as one of the avatar controllers. When he first took over the avatar’s body and was able to walk and run again, I could empathize with his joy and elation. What a gift for him to have what he thought he would never have again – even if it was only pretend. As I was watching, I couldn’t help think about my own... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4429120 Wed, 02 Feb 2011 14:55:51 +0100 4429120 http://www.medworm.com/index.php?rid=4285173&cid=t_301020_87_f&fid=34816&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FHonestMedicine%2F%7E3%2F5smNnuczGvI%2Fhmonamazon.html For over a year, I have been busy writing my book, HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases. It has been wonderful, terrible, exhausting—and ultimately, life-changing time. And now it is published--and on Amazon.com! The idea for HONEST MEDICINE started germinating in 2002, when my husband Tim was in the hospital with a non-healing post-surgical head wound caused when his suture line wouldn't heal. His doctors performed 8 surgeries to try to get his skin to heal. Nothing worked.  Then, through a friend and colleague, Dr. Carlos Reynes, I found Silverlon, a different kind of wound-healing system. Just hours after placing Silverlon on Tim’s head, his skin started to heal. I was elated. (You may read about our experience here.)�... HONEST MEDICINE: My Dream for the Future blogs http://www.medworm.com/rss/comments.php?id=4285173 Thu, 23 Dec 2010 22:38:56 +0100 4285173 http://www.medworm.com/index.php?rid=4281414&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fbeing-open-about-crohns-in-the-workplace%2F I think I have started a new era in my career — an era of openness about my Crohn’s disease. This is very unusual for me because I usually keep my disease to myself and only tell people I can trust. I definitely wait until after I prove myself, which is usually anywhere from one to two years. But this time everything is different. The work load in my new position is sometimes pretty intense due to very tight deadlines and I am having trouble with my work/life balance. I am now a proposal writer for my company and when we are responding to a request for work, the expectation is that you give everything you have to get it done by deadline. This philosophy is okay every now and then, but for the long duration it is just not feasible. Even for someone without a chronic disease, it is impor... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4281414 Wed, 22 Dec 2010 20:01:39 +0100 4281414 http://www.medworm.com/index.php?rid=4259043&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fdecember-2010-how-is-your-crohns-today%2F Hello everyone! How are you today? For those of you who are new to the blog, every now and then I like to check in to hear how you are doing and how your Crohn’s is holding up. You can write a comment letting us know how you are getting along or updating us with your current status. I have not had very good luck at all this year with my Crohn’s. I have pretty much been battling it since January 1 and I am looking forward to the New Year! I am hoping that this is just a bad year and everything will calm down in 2011. It was really weird: January 1, 2010, I became sick and I have been fighting to get healthy ever since. Typically, November to January is a hectic and stressful time of year, and I am usually worn out by the time Christmas comes. This year, I had a sinus and urinary... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4259043 Mon, 13 Dec 2010 23:02:52 +0100 4259043 http://www.medworm.com/index.php?rid=4190335&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fhappy-thanksgiving%2F It is that time of year again, the time when those who suffer from Crohn’s and other digestive diseases must remain strong in the face of an abundance of delicious and wonderful foods. This is my favorite time of year because of the cool weather, the wonderful colors on the trees, and the chance to spend time with family and friends. It is also the hardest time of the year for me with my Crohn’s. The falls in Houston are usually pretty damp and we get a lot of mold and fungus this time of year. I am highly allergic to mold and fungus so I usually end up with a sinus infection or asthma trouble around Halloween or Thanksgiving. This year I have a double whammy with a urinary tract infection and a sinus infection. I have been on antibiotics, but they are making me really sick — very ba... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4190335 Mon, 22 Nov 2010 17:02:30 +0100 4190335 http://www.medworm.com/index.php?rid=4172006&cid=t_301020_83_f&fid=34856&url=http%3A%2F%2Finsidesurgery.com%2F2010%2F11%2Fstricturoplasty-crohns-disease%2F Stricturoplasty for treatment of bowel strictures (as opposed to resection) is most indicated in Crohn’s disease to preserve bowel length and is generally done only in patients who have had multiple previous bowel resections. There is also some consideration given to this procedure in patients who have strictures and diffuse, severe disease. Contraindications include long strictures, multiple strictures in a short length of bowel, perforation, malnutrition, and hypoalbuminemia (low serum albumin.) (Source: Inside Surgery) Inside Surgery blogs http://www.medworm.com/rss/comments.php?id=4172006 Tue, 16 Nov 2010 07:15:00 +0100 4172006 http://www.medworm.com/index.php?rid=4074262&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fnew-job-same-old-crohns-worries%2F A while back, I wrote about the possibility of losing my job. Well, I lost my job – with my client – but my company has decided to keep me and has already put me into another position. My company is a consulting firm, and one of our major clients is having a lot of problems with their budget. They had to lay off about 75% of their contractors, and I am one of them. My company has put me in another position for the next year hoping that, by this time, my old job will be available again and I can just slip back into it – If I want to, of course. I may actually like this new position better and want to stay in it forever. We will see. So far, it has been quite a whirlwind. Immediately after I left my old position, I had to travel for training for my new job. I am still not certain that... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=4074262 Fri, 15 Oct 2010 14:12:02 +0100 4074262 http://www.medworm.com/index.php?rid=3987149&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fthe-frustrating-search-for-crohns-friendly-foods%2F On my recent trip to Hawaii, I visited the Polynesian Cultural Center. It is a really great place to go if you are ever in Oahu — they teach you a lot about the Polynesian culture and have plenty of great activities for both children and adults. We went there after lunch, and for some reason I didn’t bring any of my Crohn’s-friendly food with me. Big mistake! Always be prepared when you go out by bringing foods that you know that you can eat. Around 5:30, I started to get really hungry and regretting not bringing anything to eat. None of the stands had anything healthy or plain that I could eat, so we started to look for a restaurant that may have something. After looking around for a while, we ended up at this snack shop. By this time, my family was getting really hungry and... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3987149 Mon, 20 Sep 2010 20:43:19 +0100 3987149 http://www.medworm.com/index.php?rid=3920967&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fhow-is-your-crohn-august-2010%2F Hello everyone! How are you feeling today? I hope that you are well and that your Crohn’s isn’t being a pain in the rump. In case you are new to the blog, I will explain the topic of today’s blog. Every month I like to check in with everyone to see how you have been doing. Everyone writes in and tells how they have been feeling and what has been going on with their Crohn’s or with anything else. It is a great way for us to share and to vent. Since I write the blog, I get to go first. Right now my Crohn’s is not doing too badly. I just went down to 28 mg of prednisone and hope to continue weaning. I am craving carbohydrates like crazy and can’t seem to stop thinking about waffles, bread, coffee with milk, and pretty much anything bad for me that is full of starch. I wrote a blo... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3920967 Tue, 31 Aug 2010 14:06:01 +0100 3920967 http://www.medworm.com/index.php?rid=3729984&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Funderstanding-inflammatory-bowel-disease%2F is an educational series from the Crohn’s and Colitis Foundation of America (CCFA) One great resource for information related to Crohn’s and Ulcerative Colitis is the Crohn’s and Colitis Foundation of America (CCFA).  They are a non-profit organization run by volunteers and their goal is to find a cure for both Crohn’s and Ulcerative Colitis.  Every year they hold a fund-raising event called “Take Steps” for which I participate and blog about every year.  They also have a lot of information on their website that you may find interesting:  http://www.ccfa.org/info/about/crohns I just found out that they are bringing a new series of educational events to different cities across the States.  This event, open to all patients, family members, caregivers, and community members,... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3729984 Tue, 06 Jul 2010 21:19:57 +0100 3729984 http://www.medworm.com/index.php?rid=3718571&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fvacationing-with-crohns%2F Next week is vacation week!  Actually, we are leaving tomorrow and today is my get-ready-for-vacation day.  That entails packing up all of my medicines, getting together lists of possible safe places to eat, and getting the house ready.  We are going on a hopefully wonderful vacation to Hawaii.  Of course it will be wonderful, I just put the hopefully in there because I am not sure that my Crohn’s will be wonderful.  It has been acting up again – just in time for Hawaii.  Oh well, what can you do? My husband travels a lot for his company and racks up the frequent flyer miles so we were able to get the flights to Hawaii for free using his miles.  As you may have read, I have been having a tough time with my Crohn’s this year and have been trying to get back into remission after... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3718571 Thu, 01 Jul 2010 21:22:04 +0100 3718571 http://www.medworm.com/index.php?rid=3687247&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Ftake-steps-for-crohn%25e2%2580%2599s-and-colitis-2010%2F Hello Everyone!  How are you doing today?  I hope that you find yourself well and in good health.  Hopefully you participated or will participate in the annual Crohn’s and Colitis Foundation of America’s (CCFA) Take Steps for Crohn’s and Colitis walk.  In case you didn’t know, each year the CCFA holds a fund-raising walk – “Take Steps” –  to raise much-needed money for the cure to these horrible digestive diseases. The Houston walk was this past weekend, but I was unable to go due to a sinus infection and bad cough.  Of course, the first antibiotic did not work, so instead of getting better, I just kept getting worse.  I started my new antibiotic on Monday and it seems to be helping.  Although, I think that I pushed myself too hard and too fast so today I was ba... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3687247 Tue, 22 Jun 2010 15:32:36 +0100 3687247 http://www.medworm.com/index.php?rid=3599614&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Ftracking-down-a-troublesome-food%2F May 23, 2010 Today was actually a pretty good day. I didn’t feel horrible the entire day and was actually able to go in the pool and swim around a bit. This week has not been too bad either, but I am hesitant to become hopeful. The last few times that I thought I was turning around and finally climbing up the steep slope from which I have fallen (steep slope of Crohn’s flare), only to find myself still sliding even further downhill. I am not going to get too hopeful until I have been doing better for a longer period of time. My tactic right now is to just not think about it too much. I have had this disease for almost 20 years now and I am still just as confused as ever. I will think I have it a little bit figured out and then my Crohn’s will go and change on me. Right now I seem... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3599614 Wed, 26 May 2010 03:13:27 +0100 3599614 http://www.medworm.com/index.php?rid=3577473&cid=t_301020_111_f&fid=39123&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2Fnursingcomments%2Ftdtc%2F%7E3%2FxytqX3cytuI%2F           Crohn’s disease is a lifelong inflammatory bowel disease (IBD).  Parts of the digestive system get swollen and have deep sores called ulcers.  The disease usually is found in the last part of the small intestine and the first part of the large intestine, but it can develop anywhere in the digestive tract, from the mouth to the anus.  Doctors don’t know what causes Crohn’s disease.  You may get it when the body’s immune system has an abnormal response to normal bacteria in your intestine.  Other kinds of bacteria and viruses may also play a role in causing the disease.  Crohn’s disease can run in families.  Your chances of getting it are higher if a close family member has it.  People of Eastern European (Ashkenazi) Jewish family background may h... Nursing Comments blogs http://www.medworm.com/rss/comments.php?id=3577473 Wed, 19 May 2010 12:29:16 +0100 3577473 http://www.medworm.com/index.php?rid=3577357&cid=t_301020_87_f&fid=34816&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FHonestMedicine%2F%7E5%2FeCzXKjcAzsY%2FBERKSON%2520on%2520BIHARI.mp3 Last Sunday, the world lost a truly wonderful man: Dr. Bernard Bihari, a medical hero, and one of my personal heroes, as well. Dr. Bihari was the genius who discovered that a very low dose of naltrexone, a drug that had been approved at a higher dose by the FDA for another purpose entirely, could help people with some of the most difficult-to-treat diseases. Thanks to Dr. Bihari, tens of thousands (some say hundreds of thousands) of people with multiple sclerosis, rheumatoid arthritis, lupus, HIV/AIDS and even cancer are now living better lives. Many are symptom-free. Dr. Bihari had the highest of credentials: a Bachelors degree from Cornell, and his MD degree from Harvard. But he never lost sight of his true mission: to lessen the suffering of real people. And that he did.I’ve been... HONEST MEDICINE: My Dream for the Future blogs http://www.medworm.com/rss/comments.php?id=3577357 Wed, 19 May 2010 04:30:45 +0100 3577357 http://www.medworm.com/index.php?rid=3499195&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fhow-is-your-crohns%2F Hello everyone!  In case you are new to the blog, I will explain the topic of today’s blog.  Every month I like to check in with everyone to see how you have been doing.  Everyone writes in and tells how they have been feeling and what has been going on with their Crohn’s or with anything else.  It is a great way for us to share and to vent.  It has been a little while since we last did this, so I am expecting lots of comments from everyone so that we can catch up! I have not been doing too well lately.  I guess that I should have seen it coming but, as always, I seem to miss the little subtle signs of an oncoming flare.  Since 2010 has started, it seems it has been one thing after another, but hopefully I will get it turned around soon.  After the strange pain that was in my l... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3499195 Thu, 22 Apr 2010 22:00:42 +0100 3499195 http://www.medworm.com/index.php?rid=3429325&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fslacking-to-cope-with-crohns-disease%2F It seems that my Crohn’s disease has a mind of its own lately.  I like to think of it as a wild bull, strong and powerful and definitely pigheaded.  My Crohn’s can’t be tamed and, each time I try, I end up conceding, so I might as well learn how to ride.  You would think that after almost 19 years of having this disease that I would know how to ride.  But, I don’t.  Each time the ride is different.  Each time I think that I am ready and know what to do, but then the bull turns left instead of right, or goes right instead of left.  Or, it simple starts bucking me to death until I pay attention.  Well, it has my attention now! I think that I am doing better now with it than I did in the past.  In the past, I thought that I was invincible and that Crohn’s couldn’t stop m... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3429325 Wed, 31 Mar 2010 19:27:15 +0100 3429325 http://www.medworm.com/index.php?rid=3359129&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fcrohns-disease-and-bone-density%2F Last Friday, I went to see my rheumatologist to see if my bone density disintegration due to long-term prednisone usage has improved any in the last 6 months since I have taken the medication ‘Reclast’.  Reclast is a once a year infusion (it bypasses your gastrointestinal system) that helps your bones become stronger.  The verdict from the visit was not good and my yearly bone density scan showed that my density has stayed the same for two of the places that they check and one place actually got 0.2 worse.  I was really hoping for some improvement, but maybe it is still too soon. I used to drink a Dr. Pepper every day (just one), but since January of this year I have cut that out.  I read that sodas cause your blood to be more acidic, causing it to pull more minerals from your body... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3359129 Thu, 11 Mar 2010 22:56:05 +0100 3359129 http://www.medworm.com/index.php?rid=3311835&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fsupport-the-ibd-research-and-awareness-act-for-crohn%25e2%2580%2599s-and-ulcerative-colitis%2F Last year, an important Act, The IBD Research and Awareness Act, was introduced to the House and Senate to expand research for Crohn’s Disease and Ulcerative Colitis.  The legislation would enhance activities at the Centers for Disease Control and Prevention (CDC) for Crohn’s and Ulcerative Colitis, as well as, expand biomedical research for IBD (Irritable Bowel Disease). You can help advocate for the passage of the IBD Research and Awareness Act with the help of the Crohn’s and Colitis Foundation of America (CCFA).  They have made this really great website where they make it easy for you to contact your legislators and ask them to cosponsor H.R. 2275 (House bill number) and S. 981 (Senate bill number). It is very easy to do.  Just click here. Then, scroll down to the ‘compose m... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3311835 Thu, 25 Feb 2010 19:00:56 +0100 3311835 http://www.medworm.com/index.php?rid=3283721&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fbreakfast-with-crohns-disease%2F I think that I have mentioned before that I have been experimenting with my diet for the last year in an effort to improve my Crohn’s symptoms.  I have eliminated all dairy products and now use only Rice milk because it causes the least amount of trouble and tastes good.  I am also limiting the amount of gluten that I eat.  I still eat some items that have a little bit of gluten, but have for the most part deleted that out of my diet too.  I also don’t eat a lot of fiber because it seems to make matters worse.  Once you get rid of dairy, gluten and fiber, there are not a lot of choices left for breakfast. For the last year, I have been eating Trix for breakfast.  I recently discovered Berry Berry Kix and have switched to that instead because it has a lot less sugar.  I don�... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3283721 Wed, 17 Feb 2010 19:26:52 +0100 3283721 http://www.medworm.com/index.php?rid=3262759&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fwhat-kind-of-job-would-accomodate-crohns-disease%2F It seems that I may be looking at a change of careers very soon, or at the very least, a change of tasks.  I hope the impact is only a change of task, but I fear that it may be worse.  Last week I found out that the program that I have been working on is likely to be canceled.  I only say likely because there is still a small chance that Congress will vote against the President’s plan, but from what I am hearing, the outlook is not good.  No one knows what may happen or what the new “vision” really entails or how we in Houston will fit into the big picture.  I hope to stay with my current company but may be forced to look elsewhere or even into a whole new career path if nothing else is available. I really like my current employer and hope that there will be some task that I can... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3262759 Thu, 11 Feb 2010 15:47:11 +0100 3262759 http://www.medworm.com/index.php?rid=3216729&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fis-my-pain-crohns-or-something-else%2F The mystery pain that I had back in Feb 2008 has returned.  Back then, I thought that I had a kidney stone, but the doctors were not so sure.  At the time, I had a lot of pain that felt very similar to a kidney stone – came and went, sharp sometimes and dull achy pain other times.  I did have a stone that was in my kidney but the urologists told me that I shouldn’t have pain with it there – it would only hurt when it made its way to the urethra.   My general doctor thought that it was the stone causing the pain so I never really had a clear answer since no one agreed. Since then, I have had bouts of pain that felt similar but not as severe and they would last only a few days.  Well, I started having pain again on Jan 16th and it got really severe this time.  I was hurting near... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3216729 Wed, 27 Jan 2010 18:23:51 +0100 3216729 http://www.medworm.com/index.php?rid=3172176&cid=t_301020_136_f&fid=39025&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2Feverythingchangesbook%2F%7E3%2FeRIMicFz4UA%2Fpatients-for-a-moment-down-and-dirty Sifting through the emotional, administrative, and financial trauma of dealing with illness, being sick ultimately all comes back to the body.  So for this installment of Patients for A Moment, we asked that bloggers submit posts about the down and dirty physical world of their disease. Ever pulled a serious MacGyver providing your own home healthcare with saline solution and a turkey baster?  Duncan Cross has and writes about it in on the Duncan Cross post Duncan 1, Hospital 0. “I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…”  Need I say more about Leslie Rott’s post The Ultimate Co... Everything Changes blogs http://www.medworm.com/rss/comments.php?id=3172176 Wed, 13 Jan 2010 23:33:42 +0100 3172176 http://www.medworm.com/index.php?rid=3149202&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fcrohns-book-club-january-edition%2F Happy 2010!  I can’t believe that we are in 2010 already,  time really flies. I should not have written in my last blog about how well I was doing because I got sick that very same night!   I picked up a stomach bug and on top of that had a sinus infection.  I am now taking antibiotics.   So, I have started my New Year off with a blast; sick as a dog.  But, it is getting better now.  I just need to work on gaining the weight back that I lost from being sick.  I was already getting kind of low with my weight and then I lost another three or four pounds on top of that because I’m sick.  I may try drinking Ensure for weight gain again to see if it still bothers me or not. For those of you new to this Crohn’s blog we decided not long ago that we would create a book club since ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3149202 Wed, 06 Jan 2010 21:24:40 +0100 3149202 http://www.medworm.com/index.php?rid=3133711&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fhow-is-your-crohns-today-christmas-and-new-year-edition%2F Merry Christmas everyone!  I hope that you were able to have a pain free Christmas and I also wish you a Happy and Blessed 2010.  Since we haven’t had a “How is your Crohn’s Today” blog in a while (I think since August), maybe we should have one now and you can tell us how your Christmas was.  In case you are new to our Crohn’s blog, I try to have a blog once a month where we all write in and tell how we are doing (physically and emotionally) with our Crohn’s disease and pretty much just share as much as you want. I am doing really well.  I am always afraid to make that statement because I feel like whenever I do, things go bad, but I’ll risk it today.  I have recently reduced my prednisone to 8mg a day and am hoping to keep going down little by little.  So far, not... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3133711 Wed, 30 Dec 2009 22:06:03 +0100 3133711 http://www.medworm.com/index.php?rid=3100933&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fmore-on-my-anxiety-and-crohns-disease%2F As you recall from my previous blog, I have been working on trying to figure out what triggers my anxiety, recognize it when I experience anxiety and try to handle it better.  I am also trying to bring myself back to the girl that I used to be.  Before all of the terrible episodes with my Crohn’s disease I didn’t have to worry about falling down and breaking a bone, or taking a medicine that will cause me to flare up terribly, or have to worry about all the scary side effects of medicines.  I used to be so carefree and outgoing.   I feel like I have lost sight of who I am.  I know that I am a good worker, a good mother and a good wife but with all of my ups and downs with my medications and side effects galore, I am not really sure who I really am.  I have all these feelings tha... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3100933 Thu, 17 Dec 2009 20:02:16 +0100 3100933 http://www.medworm.com/index.php?rid=3079466&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fanxiety-and-crohns-disease%2F The phrase that one of our blog community members, Todd, writes often in our comments is, “Keep your mind in the game.”  That has sort of become my mantra lately.  I have to tell myself this so I can remember what is important in the big picture so I will stop worrying about the little stuff.  I have had problems with anxiety for a while now and I think that it has been building up the last few years.  One of my problems (probably due to the fact that I am female) is that I tend to over analyze everything.  Things happen to my husband, he acknowledges them, and then he forgets them and moves on.  Things happen to me and I analyze every facet of every emotion that I felt and what it was or what could I have done differently.   I am now trying to emulate my husband and be more li... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3079466 Thu, 10 Dec 2009 16:37:26 +0100 3079466 http://www.medworm.com/index.php?rid=3056782&cid=t_301020_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fan-update-on-sues-irritable-bowel-syndrome%2F Every once in awhile I run across articles, have experiences in my own life and learn something from someone else that I believe would be beneficial or at least of interest to all of you. I say this as explanation for the fact today’s blog will be a hodge-podge of things, not necessarily connected. Many of them are anecdotal experiences, not necessarily the subject of some vast scientific study; just little old me trying them out. Just think of me as a human guinea pig with a bit of nursing knowledge to keep myself safe. You will recall I have had, among my dirge of complaints, been fighting irritable bowel syndrome for a number of years. A recent bout of it resulted in a blog not long ago which stirred up a lot of response. Many of the ideas were of great interest to me. Two of them, in... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3056782 Thu, 03 Dec 2009 23:05:02 +0100 3056782 http://www.medworm.com/index.php?rid=3052284&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fcrohns-disease-book-club-blog-december-edition%2F A few weeks ago I suggested that we start a book club to get our mind off of Crohn’s disease for a bit and allow us to think about something else.    It seems like you all agree, so let’s try it out.   Remember, there are no set rules here, we can change our book club format as many times as it takes for this to be fun for all of us. Since I am the one who writes the blog, I will write about the book (or books- since I read several in a month) that I read the previous month.  I will give a short synopsis of the book and state whether it was a good read.  I will rate the book on a scale of 1-10, 1 being the worst and 10 the best and then tell you what I liked best about the book and what I liked least.  Since this is the first real Crohn’s book club blog, we should all write i... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3052284 Wed, 02 Dec 2009 22:18:38 +0100 3052284 http://www.medworm.com/index.php?rid=3029966&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fthanksgiving-with-crohns-disease%2F First and foremost, I wanted to wish all of you a very Happy Thanksgiving!  And, I wanted to let you know how thankful that I am to have all of you to share and commiserate with.  You all have truly been a blessing in my life, so thank you! Does anyone else get a little sad though, during Thanksgiving, even though you are truly thankful for what you have?  I have been very blessed to have a relatively healthy year this year and pretty much thank God every day for that.  But still, I find myself a little sad because of all that I have had to give up and how can you not be sad with all of that tempting delicious food in front of you knowing that if you eat even just one little bite of it, you will regret it for days to come. We just had a Thanksgiving party at work this last Friday.   ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3029966 Wed, 25 Nov 2009 19:49:21 +0100 3029966 http://www.medworm.com/index.php?rid=2984927&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fa-crohns-book-club%2F I was thinking that we should start a book club.  I read a lot because of many reasons, one of which is that I have a lot of potty time available for my reading pleasure.   The other, is that I just love to read.  Or rather, I love to get lost in a story and forget my troubles and worries just for a little while.  I love it when I get so excited about a book, that I can’t stop thinking about it and can’t wait to get home to read it.  The last time that happened to me was when I read the Twilight series.  I could not put those books down.  I have read many authors across the spectrum of different genres and will read just about anything, except lately anything violent or dark.  I feel that there is enough bad in the world already and I would rather read something pleasant to ta... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2984927 Wed, 11 Nov 2009 18:12:02 +0100 2984927 http://www.medworm.com/index.php?rid=2939449&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fworking-from-home-with-chronic-illness%2F It is such a shame that working from home has such a bad stigma associated with it.  Managers feel like if they don’t see their employees sitting at their desk busily chugging away, then they are not working.  For me, sometimes I am a lot less efficient at work than if I just stayed home and worked – especially if it is a really bad day.  I read an article a while back about how workers who work from home really aren’t working, but instead are goofing off without being seen by the boss.  I got upset by this article because of all of the people (like me) who actually work when working from home and hate that it takes just a few losers to spoil things for those who really need it. When I worked in Europe, I was very fortunate to have a boss who didn’t care where I worked as long ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2939449 Wed, 28 Oct 2009 19:59:58 +0100 2939449 http://www.medworm.com/index.php?rid=2899088&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fwishing-crohns-disease-had-awareness-equal-to-breast-cancer%2F I read this article the other day (I forgot what magazine it was in) about this woman who overcame breast cancer.  She was describing how a lady who had gone through breast cancer before became one of her closest friends by understanding what she was going through and helping her in ways that her other friends could not.  Even though I don’t have breast cancer, I could relate.  Anyone who has had to face any kind of unwanted diagnosis, whether of cancer or any other disease can relate to how earth shattering and scary it can be.  And about how no one really understands what you are going through unless they have dealt with something as well.   But the thing that I didn’t like too much about the article was her attitude.  To me, she didn’t have a good one.  In the article she ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2899088 Thu, 15 Oct 2009 16:03:47 +0100 2899088 http://www.medworm.com/index.php?rid=2865897&cid=t_301020_136_f&fid=39025&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2Feverythingchangesbook%2F%7E3%2FBtlxZ2sm7OQ%2Frandom-acts-of-kindness During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail. I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right. I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove togethe... Everything Changes blogs http://www.medworm.com/rss/comments.php?id=2865897 Tue, 06 Oct 2009 07:22:20 +0100 2865897 http://www.medworm.com/index.php?rid=2851932&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fprednisone-sleepless-nights-and-wistful-thoughts%2F I have sleeping problems as I am sure that many of you have, especially those of you who are on prednisone.  I have been taking sleeping pills for years but I am trying to get off them.  So far it is going pretty slowly because I work full time and need sleep to function and to keep healthy.  I listen to this CD called sound healing to help me relax and have this whole unwinding routine that I try to do in order to get my mind and body relaxed enough to go to sleep. I was very anxious last night so I checked my blood pressure and it was 133/90 which I guess is not that bad but not perfect.  So, I was laying in our bedroom listening to my CD and thinking about the melody and how my interpretation of it changes each time that I listen to it.  Tonight I close my eyes and drift away in th... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2851932 Wed, 30 Sep 2009 20:25:32 +0100 2851932 http://www.medworm.com/index.php?rid=2804107&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Ffinding-the-right-doctor-for-your-crohns-is-worth-it%2F Since so many of you responded to my blog about all the problems I was having with my rheumatologist and insurance company I thought that I would take the opportunity to say thank you and give you an update. A few weeks ago, I went to see my general doctor to get a referral for a new rheumatologist.  He seemed skeptical about how I would like her because he told me that she has a strange bedside manner.  I figured different sounded good to me at this moment and was willing to try her out.  I went to see her a few weeks back and I was really impressed.  Yes, she is a bit different, but I like her style and I like her so far.  Right away, she sent me for X-rays of my hips and bloodwork on my Vitamin D levels and a bunch of other stuff that my old doctor never did.  Plus, their office i... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2804107 Wed, 16 Sep 2009 21:30:01 +0100 2804107 http://www.medworm.com/index.php?rid=2737945&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fhow-is-your-crohn%25e2%2580%2599s-today%2F We haven’t had a “How is your Crohn’s today” blog in a while and I think we are past due. I want to know how you are doing and how you are handling your disease. Since I am writing the post that means that I get to go first:) I have been doing pretty well lately.  I had my colonoscopy a few weeks ago with very good results.  He said that I had no active Crohn’s in my colon and that was the best news that I have heard in about 10 years - or more.   Since I had such good results, I decided to try lowering my prednisone (the Doctor concurred), and so I have gone from 8mg everyday to 8mg, 8mg, 7mg, 8mg, 8mg 7mg, ect… After I am sure that my body can adjust to this level I will go to 8mg, 7mg, 8mg, 7mg, etc… Doing my tapering this way keeps my body confused as ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2737945 Wed, 26 Aug 2009 17:32:31 +0100 2737945 http://www.medworm.com/index.php?rid=2695541&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fa-firsthand-account-of-a-colonoscopy-prep%2F Conclusion to Colonoscopy Prep: Moral to the story: Don’t NOT follow the instructions.  I usually follow them to the ‘T’ but this time decided to see if I could not stay up all night.  Next time, I will just have to take the two pills earlier so that I can start the drinking process earlier so I can go to bed earlier.  This time, I didn’t have a choice on starting earlier since I was coming back from a business trip from Florida and arrived just in time to start the prep (lucky me). Good luck with your next prep! Kelly (Source: Life with Crohn's) Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2695541 Wed, 12 Aug 2009 22:01:43 +0100 2695541 http://www.medworm.com/index.php?rid=2653931&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fcrohn%25e2%2580%2599s-and-problems-with-doctor%25e2%2580%2599s-offices-and-insurance-companies%2F I have been having issues with my insurance company lately and I thought that I would share my dilemma.   Maybe someone out there has had a similar problem and could give me some advice. I go to a rheumatologist for my Crohn’s disease and for my bones.  I get inflammation in my joints which is linked to my Crohn’s and occasionally they will swell up so bad that I cannot walk. They say that it is like rheumatoid arthritis but is only my Crohn’s pretending to be RA (I don’t really have RA but the Crohn’s will mimic the RA symptoms).   I have osteoporosis from all of the prednisone that I have taken and have been taking Boniva to help build my bones back up. I have Aetna insurance and have up until recently, really liked them.  The co-payments are great (10$ for each visit) an... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2653931 Wed, 29 Jul 2009 19:03:10 +0100 2653931 http://www.medworm.com/index.php?rid=2611111&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fcrohns-disease-and-your-period%2F It is that time of the month again, and this time I don’t mean time for the monthly update on your Crohn’s (How is your Crohn’s today). It is that time of the month in my menstruation cycle and I am feeling lousy.  For all you men out there, you may not find any interest in today’s topic, so feel free to stop reading at any point in this blog. Whenever I get my period, my Crohn’s will also flare-up.  It will flare at a different variety of levels - sometimes a little bit, sometimes a lot, and sometimes not at all (although this is very infrequent).  I am not sure that it is really my Crohn’s flaring or if it is just a normal side effect of getting your period, but I usually get really bad cramps and diarrhea and pretty much feel lousy for a few days.  This happens most of t... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2611111 Thu, 16 Jul 2009 21:45:57 +0100 2611111 http://www.medworm.com/index.php?rid=2570988&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fa-successful-vacation-with-crohns-disease%2F We are all back from our wonderful vacation in Daytona Beach last week.  Today was my first full day back at work because I took the day off yesterday to catch up on unpacking, laundry, and cooking since vacations always involves loads of laundry when they are over and I needed some healthy meals for the week.  I worked a little from home, but it wasn’t even a half day since I also had to go visit my GI doctor. Our vacation was wonderful and I made it without any major problems (yay)!  I was really strict on what I would eat and only had problems the two times that I strayed.  Otherwise I felt pretty good.  We rented a house for a week using vacationrentals.com and rented this amazing house that we would never be able to afford unless we won the lottery.  It was great because h... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2570988 Wed, 01 Jul 2009 21:53:10 +0100 2570988 http://www.medworm.com/index.php?rid=2512254&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fyay-its-vacation-time-too-bad-i-have-crohns%2F Finally, it is vacation time!  Usually I approach vacations with a lot of trepidation and anxiety about how my intestines will be and stress out over how to make them behave.  But not this time; this time, I just don’t care.  I don’t have the energy to worry about it and I have been really trying to lower my stress about things that I can’t change - especially, since my episode of heart troubles.  So, I am not caring and am finding myself really looking forward to next week. We are flying to Atlanta tomorrow to meet up with my family.  We will stay with my Mother for a few days and then my sister and her family (my brother in law, niece and nephew) will meet us and we will all drive down to Daytona Beach.  I am still nervous about the drive but I plan to eat only sa... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2512254 Wed, 24 Jun 2009 21:30:28 +0100 2512254 http://www.medworm.com/index.php?rid=2512255&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fimportance-of-diet-in-crohns-disease%2F In the last blog, we touched on the subject of diet, but I want to go a little further with it this week.  What to eat and what not to eat is a really frustrating aspect of Crohn’s disease.  What we could really use is a manual that would tell us what foods to avoid instead of having to do the trial and error method that we all have to currently do.  There is no manual that is handed out once you obtain your diagnosis of Crohn’s disease that states: ‘if you eat this you will feel bad so avoid it at all costs’.  No, instead, they pretty much don’t tell you anything.  I think that the doctors purposely avoid the topic of diet because it is so different from patient to patient that there really isn’t a specific diet for Crohn’s disease that they can point you to.  But ther... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2512255 Wed, 10 Jun 2009 04:29:40 +0100 2512255 http://www.medworm.com/index.php?rid=2447729&cid=t_301020_111_f&fid=36048&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAHeartyLife%2F%7E3%2FmSTVYgVLaXE%2F A study looking at food poisoning (salmonella and campylobacter) found that people who had one or the other had a higher risk (1.2%) of developing inflammatory bowel disease (IBD) than those who never had food poisoning (0.5%). These findings were presented to doctors and researchers at the annual Digestive Diseases Week. Results showed that the risk for developing IBD grew over a 15-year period after having the food poisoning. The researchers, in Denmark, looked at the histories of over 13,000 people who had been treated for either type of food poisoning and compared them with people who had not become ill with either type of infection. IBD is a term that covers two bowel diseases : Crohn’s disease and ulcerative colitis. At this point, researchers don’t know what causes them ... A Hearty Life blogs http://www.medworm.com/rss/comments.php?id=2447729 Tue, 02 Jun 2009 00:00:17 +0100 2447729 http://www.medworm.com/index.php?rid=2442198&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Ffood-investigation-what-can-you-eat-for-ibd%2F Welcome back from the three day holiday.  I hope that you had a good Memorial Day.  We didn’t do anything special, just visited our family and hung around the house.  Our daughter spent the holiday at her friend’s pool which allowed my husband and I to have a “Lost-athon.”  We caught up on all of the TV episodes of Lost that we haven’t watched.  That was fun because we never watch three in a row.  This weekend was also great because my husband did most of the cooking (yay)!!  I am in a rut again with food.  I just don’t want to try too many different things because I like to feel good so I prefer to eat the foods that I know are safe. I have been trying this new protein antioxidant drink called Mix1 to see if it will be a good additional source o... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2442198 Thu, 28 May 2009 22:26:38 +0100 2442198 http://www.medworm.com/index.php?rid=2442199&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fgreat-job-to-all-at-houstons-take-steps-for-crohns%2F This last Saturday I participated in the Houston Take Steps for Crohn’s and Colitis CCFA walk for the cure. I had a great time!  It was in a much better location than last year and I was impressed with the turn out. In case you didn’t know, each year the CCFA (Crohn’s and Colitis Foundation of America) holds a fund raising walk “Take Steps” to raise much needed money for the cure to these horrible digestive diseases.  You can check it out on the CCFA Web site.  Check to see if the walk has occurred in your city and if not you can sign up and begin raising money.  If it has already occurred, then you can start raising money for next year. This year, they had a lot of activities for the children before the walk started – like face painting, balloon making, and playground acti... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2442199 Wed, 20 May 2009 20:30:14 +0100 2442199 http://www.medworm.com/index.php?rid=2405782&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fwhen-crohns-is-the-least-of-your-health-concerns%2F As the title suggests, when Crohn’s disease is the least of your health concerns you know it’s got to be bad.  This week has been a crazy week.  Monday I had a huge scare at work.  I started taking blood pressure medicine on Friday because my blood pressure has been a little high for the last six months (my diastolic  has been between 85-100) and since I eat well and don’t have any weight to lose, my general doctor decided that maybe the blood pressure medicine would help. He put me on a calcium channel blocker called Adalat.  The way it works is by dilating the capillaries. My whole body turned red after I took this medicine and then right after my the redness my heart started beating like crazy. I went to the clinic at work where they checked me out, called in the doct... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2405782 Thu, 14 May 2009 16:32:06 +0100 2405782 http://www.medworm.com/index.php?rid=2390147&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fliving-with-chronic-illness-during-the-swine-flu-era%2F Swine flu seems to be the new buzz words and there seems to be a lot of panic out there concerning this flu right now.  I would like to talk about this from the perspective of a mother, wife and Crohn’s disease patient. First thing I want to say is don’t panic! These are the words written on the front of the Hitchhikers Guide to the Galaxy and they are very appropriate today.  I also encourage you to get the facts.  Everyday Health has key facts about the swine flu. For some reason, the virus is a lot worse in Mexico than in the US.  I asked my general doctor on Friday if I needed to be concerned about this outbreak and if I should run out and get a supply of Tamiflu.  He told me that I actually should be a lot better off since I don’t have a normal immune system and am on immun... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2390147 Wed, 06 May 2009 21:38:37 +0100 2390147 http://www.medworm.com/index.php?rid=2382671&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fapril-check-in-how-is-your-crohns-today%2F Hey everyone!  How are you today?  I hope well.  Today’s blog is devoted to you telling us how you are doing today.  This is something that I try to do at the end of each month in order for us all to know how everyone else in our Crohn’s community is doing with their illness and life in general. I’ll go first… I am tired but good.  I am lowering my prednisone dosage which is always tricky, but I am thinking positive (or trying to not think about it).  I don’t lower it very much (from 9 mg to 8.5 mg) and then in two weeks I will go to 8 mg.  Right now I am alternating 8mg then 9mg every other day.  This confuses my body so that it doesn’t know what is coming next which makes tapering easier.  I am really happy to be down to 8.5 mg and hope that I don’t jinx myself.  ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2382671 Fri, 01 May 2009 16:45:42 +0100 2382671 http://www.medworm.com/index.php?rid=2365301&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fexercising-with-crohns-disease%2F I had a really bad flare up of my Crohn’s a few years ago where my ankles swelled up so much that I couldn’t walk for almost a month.  Crohn’s disease effects more than just the intestines, it can also affect the skin, joints, mouth, and throat.  In some people it can also affect the eyes.  Since this flare up, I stopped doing high impact exercise for fear that my joints would swell back up.  They were very touchy for a long time.  Recently, I had my yearly bone scan performed and found out that my bones actually got worse even though I was taking the bone strengthening medicine Boniva and lots of Calcium supplements (with Vitamin D) .  I started taking this dance class before I had my bone scan but am happy that I started it because moving your body around in any way helps the... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2365301 Thu, 23 Apr 2009 19:47:55 +0100 2365301 http://www.medworm.com/index.php?rid=2349171&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fmarried-with-crohns-disease%2F Living with Crohn’s disease has been a roller coaster of a life so far, and unfortunately, I keep dragging my family up and down the hills with me.  My husband doesn’t handle it so well.  His chosen method of dealing with the disease is to ignore it and pretend that it doesn’t exist.  This is what he has done in the past and hopefully will not do in the future thanks to more open and honest conversations.  I guess we’ll see. My Crohn’s disease has been the biggest issue in my marriage because it essentially affects every decision that I make and everything that I do.  It is usually the basis for my complaints to my husband and the reason that sometimes I whine (in his opinion) to him.  I don’t think that I am whining; I think that I am begging for some help!  The problem... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2349171 Wed, 15 Apr 2009 19:37:35 +0100 2349171 http://www.medworm.com/index.php?rid=2321734&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fis-your-crohns-disease-making-you-antisocial%2F I think I’m becoming antisocial.  I like to be around people; it is just that sometimes it is so tiring.  For instance, a week ago, my husband decided that he wanted to invite some friends over for a party.  He has wanted to have a party for a while but I was taking night classes in Jan. and Feb. and needed the weekends to study and do my homework (and rest!).   But, I finished my class in early March and I didn’t want to keep saying, “not right now,” so I agreed even though I had just finished taking the antibiotics for a sinus infection and was not really healthy.  My husband promised that he would do all of the work and I would only have to do minor tasks – and he even kept his promise this time!  I didn’t do too much, but mostly that is because I was sick.  I can no... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2321734 Wed, 01 Apr 2009 17:33:46 +0100 2321734 http://www.medworm.com/index.php?rid=2295067&cid=t_301020_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fa-brief-interlude-and-time-out-for-recess%2F Dear readers. I hate it when I don’t send you my bi-weekly blogs. I strive to be consistent and take pride in doing so.  Today, however, my friends, I’m going to have to skip the scheduled subject and take to the sheets with multiple trips to the bathroom. For the last two days I thought I was having a bout of irritable bowel syndrome but after a night of sprinting exhaustibly to the bathroom, for the second night, I have to conclude I have a virus. When you’re certain you have ingested “jet fuel” and hope your legs get you there rapidly enough, it’s exhausting. Therefore, I won’t write my usual blog today. This too shall pass…pun, pun. I feel lousy and must rest today. It will give me a chance to do research for this blog, dig into the pile I have of unread books and just... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=2295067 Fri, 27 Mar 2009 20:04:42 +0100 2295067 http://www.medworm.com/index.php?rid=2295065&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fmarch-check-in-how-is-your-crohns-today%2F Hello everyone!  In case you are new to my Crohn’s blog, I’ll explain the topic of today’s blog post.  Every month I like to check in with everyone to see how they have been doing with their Crohn’s disease.  It’s a nice place to congregate and share in the comment section. I will go first and tell you how I have been.   I am not too bad.  I have been sick for the last several weeks with a sinus infection but finally went to the doctor and started antibiotics.  I am feeling much better today.  I never know if I really have a sinus infection or not because my symptoms are never normal due to the prednisone I take for my Crohn’s disease which can mask the symptoms of infections and make it seem like it is less severe than it really is.  Sinus infections are very ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2295065 Wed, 25 Mar 2009 16:20:53 +0100 2295065 http://www.medworm.com/index.php?rid=2295066&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fmanaging-crohns-disease-and-your-fear%2F There are so many things in this world to fear: the economy, terrorism, loss of job, house, or possessions, asteroids hitting the Earth!  It seems that every day there is something new reported in the news for us to panic about.  If you live with Crohn’s disease, the fear is compounded since the fear of the disease can be added to the already seemingly overwhelming list of fears.  Living with a chronic disease like Crohn’s disease means that fear is an unwanted companion that we are always trying to get rid of. For me, dealing with fear is a constant battle.  I made a decision long ago that I don’t want to live in fear and I am constantly reminding myself of this.  We all have fear and I think that’s normal.  I think what really matters is how you handle your fear.  It can e... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2295066 Wed, 18 Mar 2009 21:03:30 +0100 2295066 http://www.medworm.com/index.php?rid=2234067&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fa-day-in-the-life-of-a-crohns-flare%2F Yesterday started out really bad.  When anyone would ask me how my day was, I would say “fine” but there was a lot hidden behind that word that I didn’t say.  Here is what “fine” meant for me yesterday: The night before last night I had the worst migraine headache so I went to bed early but woke up a lot during the night because of the pain.  The headache was still there when I woke yesterday morning and I felt very tired.  I am the one who takes our daughter to school in the mornings and she likes to get there early and she doesn’t like to be late.  Also, they get written up if they are late.  I had about ten minutes to finish getting ready (do my hair and get dressed) and to make my lunch, when I felt that all too familiar awful Crohn’s disease cra... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2234067 Wed, 04 Mar 2009 17:31:40 +0100 2234067 http://www.medworm.com/index.php?rid=2223203&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fi-want-a-cure-for-crohns-so-bad-i-can-taste-it%2F I hate Crohn’s disease and I wish that it would go away.  I know, I know, I should be more positive here but sometimes I really do just hate it and everything about it.   I have accepted the fact that I have Crohn’s and I have to live with it but still I dream of a day – someday – when it will no longer be such a big issue in my life.  I dream of when life will be easier and more enjoyable without so much work to make it enjoyable and without so many constraints that Crohn’s disease can bring. I have been holding out hope that somebody somewhere will get a brilliant idea and run with it and it will lead to understanding of how Crohn’s disease works.  I just have to keep my colon and keep myself as healthy as I can until then.  I yearn to be free….. Every year the Cr... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2223203 Wed, 25 Feb 2009 18:07:06 +0100 2223203 http://www.medworm.com/index.php?rid=2201193&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fmy-experience-taking-biologics-for-crohns-disease%2F There has been a lot of progress in the area of anti-TNF drugs which are usually referred to as “biologics.” In this blog post I will give you all the information that I have on each of the drugs, as well as, my experiences with the ones that I have taken.  Keep in mind that I am a mechanical engineer and not a doctor.  I also want to emphasize that these are my personal experiences with these medications.  Every person reacts to medication differently and you should always be in constant contact with your doctor before, during and after taking biologics for Crohn’s disease. A brief background: The anti-TNF drugs target a substance in the blood called the Tumor Necrosis Factor (TNF)-alpha which is a cytokine (specialized protein that promotes inflammation in the intest... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2201193 Fri, 20 Feb 2009 20:27:31 +0100 2201193 http://www.medworm.com/index.php?rid=2195234&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fkeeping-updated-on-life-with-crohns-disease%2F Hello Everyone! Welcome to Everyday Health!  You may or may not know that HealthTalk joined the Everyday Health Network back in October, 2008. All of the HealthTalk content (including blogs) has been integrated into EverydayHealth.com.   This is good news because being part of Everyday Health will allow the HealthTalk blogs to reach a larger audience and provide access to unique content that is found on EverydayHealth.com that was not previously found on HealthTalk. If you’ve been with us since the HealthTalk days, know that these blogs contain all our old posts.  If  you’ve never read this blog before, welcome! Everything will pretty much remain the same except we are now on the Everyday Health web site.  I will try to keep the blog interesting and would love to hear of ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2195234 Tue, 17 Feb 2009 22:01:03 +0100 2195234 http://www.medworm.com/index.php?rid=2129418&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fif-life-with-crohns-disease-could-be-plotted-on-a-graph%2F If life with Crohn’s disease could be plotted on a graph, it would look like a sine wave.  In case you don’t know what a sine wave looks like, or have forgotten, here is a diagram: You see, the top of the wave would be when I am in remission and the top of the bottom wave would be when I am in the apex of a flare. Instead of degrees on the x-axis, lets put weeks.  So, where you see 90 it is 90 weeks instead of 90 degrees, and 180 weeks and so on.  You see, nothing happens fast.  It is very slow.  Healing takes a long time and it often seems like I am sick forever (especially to my husband!).  When I am feeling good, I want it to last a lot longer than it does and I forget all the good times more easily than the bad (again giving the impression of being sick forever).  I... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2129418 Fri, 23 Jan 2009 17:57:49 +0100 2129418 http://www.medworm.com/index.php?rid=2090243&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fnew-years-resolutions-and-crohns-disease%2F Happy New Year, all! Wow, I cannot believe that it is 2009 already. I hope that you took some time off during the holidays and were able to relax. I took almost two weeks off and for the first time in a few years, was able to relax and enjoy myself. Of course, a few nights my family had no dinner prepared for them because I was too busy playing video games and reading books (which usually never happen). But my family managed without the prepared food just fine (there is a lesson in here somewhere I think…). My sister and her family were here until the 29th and it was so great to see them and hang out (at our house for once!). We lived in Europe for the last 5.5 years but now that we have a house in the United States, it is easier for people to come and stay with us. We are very happy... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2090243 Wed, 07 Jan 2009 19:00:11 +0100 2090243 http://www.medworm.com/index.php?rid=2075156&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fmerry-christmas-fellow-chronies%2F Merry Christmas and Happy Holidays to everyone!  I hope that you find yourself content, happy and surrounded by people who love you.  I hope that you take joy in what blessing you have and that you do not focus too much on the burdens which you bear.  I hope that you have a day of rest from the pain and misery of this disease, but if you don’t, I hope that you feel our love and know that we are all together - not alone.  Thank you for your sharing and your support and I hope to hear a lot from all of you in 2009! (Source: Life with Crohn's) Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2075156 Thu, 25 Dec 2008 18:59:30 +0100 2075156 http://www.medworm.com/index.php?rid=2047803&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fthe-colors-of-your-poop-and-what-it-means%2F There are many things that you can learn about the status of your health just by observing the color and texture of your poop and the frequency with which you go. All of you veteran Crohnies out there know exactly what I am talking about. For all of you newly diagnosed Crohn’s patients, I hope this will help you a little. And, everyone, please provide your insight as well! Brown Brown is the normal color of poop. There is a pigment called bilirubin that is formed when the red blood cells in the liver and bone marrow break down. This ends up (by a complicated process) in the intestines where bacteria begins to form and eat which turns the poop brown. When iron in the red blood cells combine with bilirubin, it turns brown and when the iron influenced bilirubin combines with the poop,... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2047803 Wed, 17 Dec 2008 18:47:51 +0100 2047803 http://www.medworm.com/index.php?rid=2013913&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fdecember-check-in-how-is-your-crohns-today%2F Hello, everyone! I hope that you made it through the Thanksgiving holiday better than I did. It is time for another installment of “How is your Crohn’s today?” and I want to hear how all of you are and how your holiday went. The day started out badly for me because I woke up with cramping and diarrhea and spent most of the morning on the toilet. I even told my husband that I wanted to stay home because I was really not feeling well and couldn’t imagine eating or socializing and was thinking that I wouldn’t mind being alone in my misery. We were going over to his parent’s house to celebrate with his family and some friends. But, of course, he told me that I cannot be all alone on Thanksgiving, so I reminded myself of all that I am thankful for and tried t... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=2013913 Thu, 04 Dec 2008 18:30:09 +0100 2013913 http://www.medworm.com/index.php?rid=2006555&cid=t_301020_117_f&fid=36026&url=http%3A%2F%2Fblog.healthtalk.com%2Fzimney%2Funderstanding-biologics-how-they-differ-from-drugs-and-why-they-cost-more%2F Many of our readers either already have or will in the future encounter the possibility of being treated with a biologic medication. This is because biologics have revolutionized the treatment of such chronic illnesses as rheumatoid arthritis, psoriasis, psoriatic arthritis, Crohn’s disease, and multiple sclerosis, and are widely used in treating a variety of cancers. To name just a few, these products include Enbrel, Humira, Remicade (infliximab), Avonex (inteferon beta-1a), Betaseron (interferon beta-1b), Tysabri, Cimzia (certolizumab pegol), Herceptin (trastuzumab), Rituxan (rituximab), Neupogen (filgrastim), Neulasta (pegfilgrastim) and Leukine (sargramostim). So just what are biologics, how do they differ from more traditional drugs, and why are they so expensive?Although some b... Dr. Z's Medical Report blogs http://www.medworm.com/rss/comments.php?id=2006555 Tue, 02 Dec 2008 18:06:00 +0100 2006555 http://www.medworm.com/index.php?rid=1991743&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fholiday-parties-and-crohns-diseaseavoid-if-possible%2F It’s that time of year again for parties, celebrating, shopping and being thankful. What are you thankful for this year? I am thankful for so many things, and I am going to put these things into the forefront whenever I am feeling bad about not being able to eat anything but plain boring food. No matter, at least I will not gain weight. I have been in a funky mood lately. I think that it has more to do with going down on the prednisone than anything else. I am now on 12mg of prednisone and hope to keep going down. I am trying not to get too excited or look forward to getting lower too much so that way I don’t get too disappointed. But, I am happy to be at 12mg and maybe will get to 11mg by Christmas. And then, maybe 10!!! I haven’t been to 10mg in a long time. This year I... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1991743 Wed, 26 Nov 2008 19:27:11 +0100 1991743 http://www.medworm.com/index.php?rid=1975922&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fa-web-site-that-finds-toilets-anywhere-in-the-world%2F I was driving to work in the morning the other day, and on the radio they were talking about situations when you had to go to the bathroom at a time that was really inconvenient. They had the listeners call in with their stories. I didn’t call because I have way too many stories to tell as most of you probably do too (unfortunately)! But the radio announcer started talking about this Web site that maps all of the toilets all around the world. And, even better, you can add in a toilet so that everyone else will know where it is. Isn’t that great? We can surely add a lot of information into this tool The Web site is called SitorSquat.com, let me know what you think.  But don’t click on any of the links that say that you have won anything - a lot of times people are just p... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1975922 Wed, 19 Nov 2008 18:55:04 +0100 1975922 http://www.medworm.com/index.php?rid=1975919&cid=t_301020_117_f&fid=36026&url=http%3A%2F%2Fblog.healthtalk.com%2Fzimney%2Fnatural-remedies-for-irritable-bowel-syndrome-ibs%2F It’s not often that I recommend natural remedies because there’s rarely any scientific evidence that they work better than a placebo. But when there’s data supporting their use I’m all for it. Such is now the case in the treatment of irritable bowel syndrome (IBS) as shown by a review of research recently published in the British Medical Journal. Turns out that two of the best treatments for IBS, peppermint oil and fiber, are old-fashioned, inexpensive and widely available over-the-counter (OTC). And I don’t mean that these are just two of the best natural remedies or two of the best OTC remedies, they are two of the best remedies period. The research review found three IBS treatments to be consistently better than placebo. In addition to peppermint oil and fi... Dr. Z's Medical Report blogs http://www.medworm.com/rss/comments.php?id=1975919 Tue, 18 Nov 2008 19:01:55 +0100 1975919 http://www.medworm.com/index.php?rid=1955589&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fspirituality%2F When I was growing up, we didn’t really attend church on a regular basis. My mother is a very spiritual person and taught me about God and religion, but my father at that time was not a big believer. In high school and at the beginning of college, I declared myself an agnostic. I am not sure if I ever really truly was agnostic of if I just went along with the idea because I thought it was cool. It wasn’t until after a few years with Crohn’s that I really became in touch with my spirituality and my religion. It wasn’t like I came down with the disease and suddenly came to God. It was a very slow process with me not understanding what was awakening within me. But slowly, with time, I could feel that God was in my life and guiding me on a path. Where this path would eventually lead m... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1955589 Wed, 12 Nov 2008 18:05:34 +0100 1955589 http://www.medworm.com/index.php?rid=1939860&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fcrohns-disease-and-cruises-a-recipe-for-love%2F We are back from our 10-year anniversary cruise, and we are so in love! Really, it was nice spending some quality time together and having no other responsibilities. We get along really well - especially when there are no chores to fight about. The cruise was okay. I was nauseous from the boat rocking - even with the patch on. The seas were not calm at all, and there was some bad weather every now and then. We had too many days at sea, and we are not really casino players or lay-in-the sun kind of people. We liked the shows at night, and I really liked the dinners. Before the cruise, I had contacted Carnival Cruise Lines asking if they could support my diet. They sent me some forms to fill out explaining my medical condition and my requirements. I wrote that I could not tolerate pepper or ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1939860 Wed, 05 Nov 2008 23:20:14 +0100 1939860 http://www.medworm.com/index.php?rid=1902233&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Foctober-check-in-how-is-your-crohns-today%2F Hello everyone! Hope you are feeling hopeful today. Today’s blog’s topic is our monthly tag-up to let each other know how we are doing and feeling. I hope that you write in, and I look forward to your comments! I will start by telling you how I have been doing this month. Awful!! Okay, it is not so bad, but still, I would not mark this month up as being one of the good ones. I have been in a really bad mood about everything lately. I am very tired from all of this hurricane business and just plain tired of everything. We finally got our power back – after two weeks – and moved back into our house (Yay!). We were staying with my in-laws because I had moved over there before the storm and there was really no reason to come back to an un-powered home when my husband finally returned.... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1902233 Wed, 22 Oct 2008 23:19:45 +0100 1902233 http://www.medworm.com/index.php?rid=1883564&cid=t_301020_150_f&fid=35777&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmalot%2F%7E3%2F421862289%2F Fred Baron, a prominent Dallas trial lawyer who helped bankroll John Edwards’ presidential run and also paid for the former senator’s mistress to leave Chapel Hill, North Carolina, after the affair made national headlines, is dying of multiple myeloma. But money won’t buy the wealthy, 61-year-old Democratic Party fundraiser a medication that may improve his odds of living beyond the next few days - Tysabri, which is sold by Biogen. Despite a furious publicity campaign drummed up by his son, Andrew, Biogen refuses to make the medication available. Never mind that calls to Biogen ceo Jim Mullen were placed by various politicians - Bill and Hillary Clinton, Henry Waxman, Ted Kennedy, Tom Harkin, John Kerry - or their staffs. Oh yes, Lance Armstrong also rang. Mullen is resol... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=1883564 Wed, 15 Oct 2008 19:59:35 +0100 1883564 http://www.medworm.com/index.php?rid=1826318&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fchronic-disease-and-natural-disaster-preparedness%2F We have made it through the storm and, all in all, feel very lucky. My daughter and I evacuated our house and went to stay at my in-laws’ house on the west side of town. My husband had been in Indonesia during the ordeal but came home last Thursday- which made me feel better. We were lucky that there was a cold front that moved through the area and I know everyone in Houston was grateful for that. Our house has suffered some damage from water (only in one room) and I hope that our wood floor is not ruined. The wood in the other rooms may be at risk too without the power because of the humidity. At least it is not as hot and humid as it could be. Our fence is gone, and our trees are down, but that’s about all. We are lucky compared to a lot of people. On top of everything that i... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1826318 Wed, 24 Sep 2008 20:07:55 +0100 1826318 http://www.medworm.com/index.php?rid=1802966&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fpreparing-for-hurricane-ike-during-a-storm-of-fears%2F Editor’s Note: Kelly wrote this post last week before Hurricane Ike hit her hometown of Houston. I was laying here trying to sleep, and I couldn’t help thinking about stress management. I am laying here thinking about stress management because I have been under a lot of stress this last week, and I am in need of some sort of stress management. Last Sunday, my husband left for Indonesia and since he is so far away (12 hours ahead) I have been a little anxious. He is also in a remote area, so it is not easy to get in touch with him. Before he left, hurricane Ike was still far away and forecasted to hit in Mexico. Now, on the Thursday night before Ike is to hit, he is projected to come right over us. They have evacuated my county and so my daughter and I are at my in-law’s h... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1802966 Thu, 18 Sep 2008 00:04:05 +0100 1802966 http://www.medworm.com/index.php?rid=1783013&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fhow-can-we-get-crohns-disease-on-a-postage-stamp%2F I was in the post office this Friday and I noticed that there was a stamp for breast cancer that cost a little bit more than the normal postage stamp, but the extra funds would go towards breast cancer research. And I thought, “Why is there no stamp for Crohn’s disease?” I know that our disease is not as widely known as cancer, but there must be a way that we can start changing that. How can we get a stamp? Is it even possible to get a stamp for Crohn’s disease similar to the stamp for breast cancer? I tried looking around to see how to even begin the process but didn’t find anything. I am sure that we will have to spread the word and get Crohn’s disease to be a household name, or at least more widely known before anyone makes a dedicated postage stamp about it. I took part in ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1783013 Wed, 10 Sep 2008 22:44:15 +0100 1783013 http://www.medworm.com/index.php?rid=1739552&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Ffrustrations-and-feelings-about-my-crohns-disease%2F I guess that I still have not completely accepted my Crohn’s disease because I spent last weekend feeling completely frustrated about everything. It started out with a huge fight between me and my husband Friday night. We always fight when I start feeling bad. I say he doesn’t care and is not sympathetic enough and he says that I am whiny and in a bad mood. I was in bad shape on Friday (I think now that maybe it was bad tuna fish or the mayo) and had a horrible day at work. I was really tired when I came home and was not looking forward to the evening of packing for our trip to Washington DC. I was really just not looking forward to the trip at all and then we have a fight, which makes everything worse. It seems that we fight when we are stressed. I wanted to just get my stuff ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1739552 Thu, 28 Aug 2008 16:30:50 +0100 1739552 http://www.medworm.com/index.php?rid=1705049&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fwhat-spices-can-your-crohns-disease-tolerate%2F Today I thought we could make a running list of what spices other people with Crohn’s disease can tolerate. I can’t seem to tolerate much, and pretty much stick to the same old spices. Problem is, everything starts to taste pretty similar and I am always looking for ways to make my boring food more interesting without upsetting by insides. Here is the list of spices/ingredients that I tolerate well and use very frequently: Parsley Salt Olive Oil (a lot) Oregano Lime - juice or crystallized lime powder Lemon Soy sauce Basil (not a lot) Chives Celery salt My list of spices is pretty short. I cook a lot of fish in olive oil with salt and parsley. I will often throw some tomatoes and some onions (for the flavour - I don’t eat them) on top of the fish with some oregano, sal... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1705049 Wed, 13 Aug 2008 18:35:39 +0100 1705049 http://www.medworm.com/index.php?rid=1686621&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Faugust-check-in-how-is-your-crohns-today%2F I missed our July edition of “How is your Crohn’s Today?” The month of July just seemed to fly by so fast and now it is already August. I just don’t know where the time went. Before I know it, 2009 will be here and I will have to learn to write a new date on my checks (it took me months to write 2008 instead of 2007). So…how is your Crohn’s today? I hope well, or at least better than yesterday. As for me, I am doing better than last week. I think I have made it through the lowering of the prednisone and will stay at this level for another two weeks. Mostly because I have a class in Washington D.C. on the 18th and I don’t want to rock the boat until after that. I really don’t want to get up to go to the bathroom 100 times during the class (oka... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1686621 Thu, 07 Aug 2008 03:56:16 +0100 1686621 http://www.medworm.com/index.php?rid=1668785&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Ftaking-the-occasional-sick-day-because-of-crohns%2F Tonight I am having insensitivity issues, so instead of brewing about all of it I will just share with you. I know that my feelings are wrong but that doesn’t stop me from feeling them. This last week I have had what I guess was a cold and now my husband says that he has a cold, which I apparently gave to him. I have a hard time telling what exactly is wrong with me since I have a lot of sinus problems and get these bouts of pain throughout my body (like a flu). I only know if I had something for sure if my husband or daughter starts to feel bad too. I am working on my sensitivity, but sometimes I think that my husband can be such a baby when he doesn’t feel good. I know that this is wrong, but I want to scream - why can’t I lie around and do nothing at all and lie in my ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1668785 Wed, 30 Jul 2008 23:16:32 +0100 1668785 http://www.medworm.com/index.php?rid=1649368&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Ffacing-your-crohns-fears%2F I went to all of my doctor’s appointments last week and they agree that I am doing good, but I am still too high on the steroids. I have to go down really slowly because whenever I taper too quickly, I flare up again and end up starting all over. I refuse to start all over so I am going at a very slow pace. So far I have made it down to 12 mg of prednisone and hope to continue to get lower. Each time that I go to the doctor, I come away filled with anxiety over all the bad things that can go wrong. I get this sense of urgency to get off the prednisone (from my rheumatologist mainly) but I know that if I push too hard too fast that my body does not react kindly. I have been there several times already. My gastro doc understands this and tries to find other alternatives for me, but the... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1649368 Wed, 23 Jul 2008 22:47:31 +0100 1649368 http://www.medworm.com/index.php?rid=1631708&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fwhat-its-like-to-be-pregnant-with-crohns-disease%2F Since I was talking about my daughter last week, I thought that I would continue that theme this week and tell you about my pregnancy. We had only been married for three months and never planned to have a baby so quickly. In fact, we were going to wait two years to get accustomed to being married while we investigated the risks associated with having Crohn’s disease and being pregnant. The year of our wedding, I was really adamant about getting off the steroids and not being fat-faced for my wedding day. I had been recovering from a flare when he proposed and when he told me he wanted to get married in six months, the only thing I could think of was “how will I ever get low enough on the prednisone to look normal for my wedding?” But I did it! I managed to get down to 5 mg and wa... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1631708 Wed, 16 Jul 2008 19:55:20 +0100 1631708 http://www.medworm.com/index.php?rid=1606285&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fcrohns-can-bring-out-the-best-and-worst-in-us%2F I have been on 15 mg of prednisone for over a month now, so now I have to decrease my level of dosage. I hate doing this because I was just starting to feel good and felt like my brain was no longer in a fog. Right after we got back from San Francisco, I started the decrease of prednisone and have been feeling the effects ever since. Friday I was just plain emotional, needy and cranky. It also doesn’t help when I am stressed and tired, which is what I have been. I haven’t been able to sleep (even with a sleeping pill) and I know that lack of sleep plays a big part in my mood. Everything was great in San Francisco, but when we came home my Crohn’s started reacting on top of not being able to sleep. I wanted my husband to just do all the chores because can’t he see that I need to res... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1606285 Thu, 10 Jul 2008 20:19:27 +0100 1606285 http://www.medworm.com/index.php?rid=1544711&cid=t_301020_87_f&fid=36941&url=http%3A%2F%2Fwww.mazecordblood.com%2Fblog%2F%3Fp%3D32 Stony Brook University Medical Center is launching a clinical trial examining the the infusion of stem cells to treat Crohn’s Disease.  If you are familiar with Crohn’s Disease, it is a life-altering disease that can eventually lead to removal of part of a patient’s intestines. It is hoped that this treatment will induce remission for patients who are no longer responding to existing regimens.  Crohn’s Disease has meaning for me personally because I have a friends who suffers from Crohn’s.  I have seen how he suffers and how he has lost opportunities because of months in the hospital, trying to control a flare-up of the disease.  If doctors can come up with a treatment to help these patients who will not respond to existing regimens, it will be a huge im... Cord Blood News blogs http://www.medworm.com/rss/comments.php?id=1544711 Wed, 25 Jun 2008 14:11:23 +0100 1544711 http://www.medworm.com/index.php?rid=1509263&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fhow-is-your-crohns-today-the-june-edition%2F Today has been miserable for my Crohn’s, but I can’t complain too much because I had four really good days in a row (and on travel)! It was a miracle. I have never felt so good on travel before. This time I took extra precautions and was really strict with my diet. I didn’t even care if the waiter thought that I was crazy for wanting nothing except some salt on any of my food. I told them that I was allergic to pepper and seasonings. The first night, we went out to a restaurant that made grilled items. I told them specifically to not put anything on it and when they served it to me, it had garlic mashed potatoes instead of the white rice I ordered as well as pepper. We sent it back and they gave me a new one. When the new plate came back the dish still had pepper on it. I thi... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1509263 Wed, 11 Jun 2008 22:47:22 +0100 1509263 http://www.medworm.com/index.php?rid=1494645&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fdoes-this-argument-sound-familiar%2F My husband is traveling to San Francisco and he wants me and my daughter to join him for the weekend. The plan is to leave tomorrow and come back on Sunday night. When he first proposed this idea, we had an argument about it because he thinks I am “being difficult,” while I think he is making things too complex. He wanted a decision right away and I was stalling. The thing is, I want to go. I have always wanted to go to San Francisco and ride on that trolley that goes down that great big hill. But truth be told – I am afraid to go. I want to get off my prednisone really badly, and because I am on the path to recovery I don’t want anything to get in the way of that. Travel usually means not sleeping well and eating foods that don’t agree with me, and I usually don’t feel all tha... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1494645 Wed, 04 Jun 2008 21:47:22 +0100 1494645 http://www.medworm.com/index.php?rid=1494559&cid=t_301020_150_f&fid=35777&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmalot%2F%7E3%2F304588986%2F The agency is conducting a safety review of Enbrel, Humira, Cimzia and Remicade for a possible association with lymphoma and other cancers in children and young adults who have Juvenile Idiopathic Arthritis and Crohn’s disease. So far, the FDA has received 30 reports over the past 10 years, and about half of the cancers were lymphomas and included both Hodgkin’s and non-Hodgkin’s lymphoma. The FDA notes that the drugs suppress the immune system by blocking the activity of TNF, a substance in the body that can cause inflammation and lead to immune system-related diseases such as JIA, and Crohn’s disease. And the agency has been aware of the possible association between the use of TNF blockers and the development of cancer - prescribing info for all four TNF blockers warns about... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=1494559 Wed, 04 Jun 2008 14:40:38 +0100 1494559 http://www.medworm.com/index.php?rid=1461316&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fpost-op-thoughts-can-invoke-intense-emotions%2F This weekend my aunt and uncle came to visit us and it was so nice to have them here. My uncle’s brother had bladder cancer and had to have his bladder removed last week so they came through Houston to spend some time with us while visiting him. They took my uncle’s brother’s bladder out and made what is called an Indiana pouch from his intestine. An Indiana pouch is a surgically-created urinary diversion used to create a way for the body to store and eliminate urine for patients who have had their urinary bladders removed. I really empathized with him because I can understand the trauma that he is going through, even though what I have had to deal with in terms of surgery are way less than what he is dealing with. A couple of years ago I had to have surgery to remove an abscess. The... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1461316 Wed, 21 May 2008 23:39:37 +0100 1461316 http://www.medworm.com/index.php?rid=1443257&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fwhat-can-a-hamster-teach-you-about-stress%2F We bought a hamster for our daughter’s birthday as her very first pet. The hamster’s name is Stella Luna and she is pretty cute. It turns out that I am highly allergic to hamsters so I don’t go near her to help take care of her in any way. This is good for my daughter because she is learning how to be more responsible and I am learning how to butt out and let her be in control of something. You are probably wondering why I am writing about our pet Stella in my Crohn’s blog. Well, as it turns out hamsters are very sensitive to stress. They do not like change and get anxious pretty easily. I read the “How to Take Care of Your Hamster” book after we got her and it states that after you buy your hamster you should leave them alone for a few days to let them adjust to their environ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1443257 Wed, 14 May 2008 22:30:08 +0100 1443257 http://www.medworm.com/index.php?rid=1426895&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fhealthcare-election-2008%2F We are in the midst of a very exciting and important presidential election, so I thought that we could spend some time discussing what we think should be done about healthcare. In particular let’s discuss what we think is wrong with the current healthcare system and what kind of things we think could be done to fix it. Below is a quick summary of the candidate’s healthcare plans (based on a summary from the New York Times). Clinton’s plan - Require everyone to get health insurance, subsidized by employers and the government; pay for it by rolling back tax cuts for households earning over $250,000 and savings in the existing system. • Requires large employers to provide insurance or contribute to the cost. • Provide tax credits to small businesses and subsidies for low-income peop... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1426895 Wed, 07 May 2008 17:35:30 +0100 1426895 http://www.medworm.com/index.php?rid=1410001&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fhow-is-your-crohns-today-3%2F I am going to start the “How is your Crohn’s today?” monthly installments again in order for all of us to keep up with how everyone else is doing. In case you are new to this blog, I stole this idea from the MS blogger Trevis Gleason because I thought that it was a great idea. The idea is that we each tell how we are feeling today. I will start by saying that I am generally good. I have decreased my prednisone to 15mg per day and the last couple of days I have been a little depressed and very tired. I know that it is my medicines that make me feel this way, but still, it doesn’t make the sadness go away or the irrational thoughts, joint pain and certainly doesn’t make my mind work faster. I just have to wait it out until I get balanced again. I was feeling really good bu... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1410001 Wed, 30 Apr 2008 18:24:52 +0100 1410001 http://www.medworm.com/index.php?rid=1402141&cid=t_301020_97_f&fid=35050&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmaGazette%2F%7E3%2F278464653%2Fcimzia_approved_by_fda_to_trea.html The U.S Food and Drug Administration has approved Cimzia (certolizumab pegol) for the treatment of moderate to serve Crohn's disease in adults who have not responded to other therapies."Crohn's is a debilitating disease that disrupts the quality of life for its sufferers," said Julie Beitz, M.D., director of the Office of Drug Evaluation III for the FDA's Center for Drug Evaluation and Research. "This drug works to reduce the signs and symptoms of Crohn's, but it also carries risks that will require patients on it to be closely monitored by their physicians or other health care professionals."Cimzia is to be given, by injection, every two weeks for the first 3 injections and once the medication's benefit has been established patients are to receive t... PharmaGazette blogs http://www.medworm.com/rss/comments.php?id=1402141 Sat, 26 Apr 2008 21:00:49 +0100 1402141 http://www.medworm.com/index.php?rid=1396459&cid=t_301020_117_f&fid=36026&url=http%3A%2F%2Fblog.healthtalk.com%2Fzimney%2Fcimzia-approved-for-crohns-disease%2F The FDA has granted approval of Cimzia (certolizumab pegol) as the fourth biologic agent for the treatment of Crohn’s disease. Cimzia, like Remicade (infliximab) and Humira (adalimumab), is an antibody that blocks the action of TNF (tumor necrosis factor), a pro-inflammatory chemical known to play a central role in causing the pathology of a variety of inflammatory disorders including Crohn’s, ulcerative colitis, rheumatoid arthritis and psoriasis. Tysabri (natalizumab), the fourth biologic for Crohn’s, is also an antibody, but it works by blocking the action of certain types of white blood cells that are involved in the inflammatory process. Cimzia received approval for treating adults with moderate to severe Crohn’s disease who have not responded to conventional therapies. Al... Dr. Z's Medical Report blogs http://www.medworm.com/rss/comments.php?id=1396459 Thu, 24 Apr 2008 18:28:04 +0100 1396459 http://www.medworm.com/index.php?rid=1392577&cid=t_301020_150_f&fid=35777&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmalot%2F%7E3%2F275682655%2F A New Jersey state court jury today awarded $10.6 million in compensation to a Utah woman who claims to have developed inflammatory bowel disease from taking Roche’s Accutane acne drug, according to Mealey’s. The nine-member jury in the Atlantic County Superior Court ruled that the pill cause IBD, and Hoffman-La Roche failed to adequately warn the plaintiff, Kamie Kendall and her doctor, about Accutane’s IBD risks before April 1999. As a result, the failure to warn was the proximate cause of Kendall’s IBD. The jury voted 9-0 on those three questions, and voted 7-2 to award compensation of $78,500 for past medical expenses and $10.5 million in unspecified compensation. A source told Mealey that Judge Carol Higbee denied a motion to award punitive damages. Kendall’s case w... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=1392577 Tue, 22 Apr 2008 21:14:24 +0100 1392577 http://www.medworm.com/index.php?rid=1378076&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fchicken-soup-for-crohns%2F I have been in a rut lately with cooking. I am just plain BORED with my food and I’m trying to find ways to make it more interesting without too much effort. I have been avoiding dairy, chocolate (with the occasional divulges), red meat, raw vegetables, raw fruit, and most breads. Some types of white bread seem to cause a lot of gas and I am not sure why some do and some don’t. I think that maybe it is gluten. I seem to tolerate the Hawaiian bread the best and it tastes really good. There are really not that many variations of what I cook because usually I need something easy to make that’s healthy. That’s the problem with Crohn’s; it is not like you can just pick something up at the store or get take out. Those places want to please the large majority of people and most people l... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1378076 Wed, 16 Apr 2008 21:05:13 +0100 1378076 http://www.medworm.com/index.php?rid=1366981&cid=t_301020_129_f&fid=36035&url=http%3A%2F%2Fblog.healthtalk.com%2Fchronic-pain%2Flife-with-chronic-pain%2Ffish-oil-helps-ease-your-inflammation%2F The subject of omega-3 fatty acids seems to be popping up everywhere. When I decided to delve into this subject, I had no idea how many divergent opinions there are on the subject. I’ll try to summarize what I found. First of all, wouldn’t our grandmothers be tickled that cod liver oil is now recommended by the Journal of the American Medical Association (JAMA)? The consensus of opinion and studies is that fish oils do help to calm down the inflammatory process found in both RA and OA, especially when taken with NSAID’s (non-steroidal anti-inflammatory drugs). Apparently, they may reduce the C- reactive protein which reveals inflammation in the blood. Omega-3’s may also help with Crohn’s, ulcerative colitis, high cholesterol and heart disease. On the other hand, omega-6 fatty aci... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=1366981 Fri, 11 Apr 2008 20:05:16 +0100 1366981 http://www.medworm.com/index.php?rid=1361282&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fan-important-crohns-webcast%2F Yesterday I had the great opportunity to be a guest speaker on the HealthTalk Crohn’s webcast called, “No one understands my pain.” This is such an important topic to me because I have a hard time getting people to understand me and being open enough for them to even do so. This blog will be short because I am pretty tired. I hope that you are pain free and are doing well. If not, I am praying for you! Below you will find last night’s webcast description and link to the replay. Enjoy! No One Understands My Pain: Communicating About Crohn’s Disease and Colitis Often when you’re suffering from painful Crohn’s or colitis symptoms, you may look healthy to others and they may assume you feel better than you do. So how do you ask for the support, understanding and help that you ne... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1361282 Wed, 09 Apr 2008 19:57:06 +0100 1361282 http://www.medworm.com/index.php?rid=1349932&cid=t_301020_158_f&fid=36024&url=http%3A%2F%2Fblog.healthtalk.com%2Fcaregiver%2Fjeff%2Fthe-grim-numbers-around-alzheimers-disease-and-caregiving%2F You may have noted the 2008 Alzheimer’s Disease Facts and Figures report that was released last week by the Alzheimer’s Association. Most of the news organizations that covered the report focused in on the shocking statistic on the cover: “10 million U.S. baby boomers will develop Alzheimer’s disease.” So, as usual, the Baby Boomers were the center of the story in the Boomer-dominated media, but I was more interested in some of the facts buried inside the report related to caregiving for someone with Alzheimer’s. I’ve always thought that in many ways Alzheimer’s disease is the worst-case scenario of caregiving. In severe cases, people with Alzheimer’s may need bathing, dressing, feeding and constant watching by their caregiver. They may have challenging behavioral problem... Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1349932 Fri, 04 Apr 2008 17:01:17 +0100 1349932 http://www.medworm.com/index.php?rid=1346271&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fsetting-my-priorities-to-find-balance-in-my-life%2F It seems that my life is usually out of balance. I get focused on one aspect and then the others fall by the wayside. It is a constant cycle of catching up. Getting my life in order and finding more time for me to do things that I want to do instead of things that I have to do has been my challenge this last year. I work full time, am a mother and a wife- which includes keeping up with everything related to the household and daughter, and have to get my Crohn’s disease into remission so that I can get lower on the prednisone. Each of these things is a full time job and it always seems that something has to give. I can never have it all and can not give 100% to any one category. First thing to do is to figure out what my priorities are. I always place being a mother as my number one prio... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1346271 Wed, 02 Apr 2008 21:56:59 +0100 1346271 http://www.medworm.com/index.php?rid=1329240&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fim-going-to-do-what-i-wantregardless-of-my-crohns%2F This Thursday I am starting an oil painting class and I am pretty excited about it. I am also a little bit nervous. I love to paint for many reasons but mostly because I love the vivid colors of the oils and I love the freedom that I feel when I paint. I can do whatever I want with the colors and it is bliss to be free like that. It is also very relaxing. I also love dancing for the same reason. I spend most of my days being constrained by what I can’t do that I love the feeling of letting go, of being free from everything, even if only for a moment. I have never taken a formal painting class before; I have just messed around with oils at home. I am nervous about the class mostly because I worry that my Crohn’s will act up. It is impossible to predict how I am going to feel and I don�... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1329240 Wed, 26 Mar 2008 22:57:26 +0100 1329240 http://www.medworm.com/index.php?rid=1319621&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Flets-get-loud-for-the-cure-for-crohns%2F As you know from all my earlier posts last year, I have just recently (well 9 months ago) moved back to the United States from France. One thing that I missed living in another country was the opportunity to participate in the Crohn’s and Colitis Foundation of America (CCFA) events to help raise money for the cure of these terrible diseases. This year I have signed up to participate in the Take Steps for Crohn’s and Colitis Walk and I hope to raise a lot of money for research. You all know the terrible options that we have out there as far as medicines are concerned. I am one of those people (and I know there are many out there like me) who can not tolerate the anti-TNF drugs (I started having neurological problems) and can not tolerate an immunosuppressant such as 6MP or Imuran (I... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1319621 Fri, 21 Mar 2008 19:55:41 +0100 1319621 http://www.medworm.com/index.php?rid=1312522&cid=t_301020_158_f&fid=36024&url=http%3A%2F%2Fblog.healthtalk.com%2Fcaregiver%2Fjeff%2Fpops-and-paperwork%2F I don’t know when the last time Pops filed a tax return was – a dozen years ago or longer, but now he says he wants to file one for 2007 to get the $300 payment from the federal government under the recent stimulus package. The only problem is Pops didn’t keep any of his 1099 income statements when they came in the mail. In addition to Social Security, he receives small pensions from his old carpenter’s union and from the state from when he was superintendent of buildings and grounds for a local school system. He needs these forms to file his taxes. Pops blames the cleaning lady for losing his income statements, but this is an old excuse he has used when he loses stuff that comes in the mail (before it was the cleaning lady it was my mother losing stuff). The fact is he is not a �... Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1312522 Tue, 18 Mar 2008 22:41:16 +0100 1312522 http://www.medworm.com/index.php?rid=1298828&cid=t_301020_158_f&fid=36024&url=http%3A%2F%2Fblog.healthtalk.com%2Fcaregiver%2Fjeff%2Fcaregivers-need-to-see-the-doctor-too%2F If you are a reader of this blog you may remember my New Year’s resolution to get myself a medical checkup in 2008 . It had been quite a few years since my last, and I am getting to the age when anyone’s health begins to fray a bit around the edges. I already know I have asthma (pretty well controlled) and sinusitis that causes my nasal passages and ears to clog up from time to time. I also suspected my cholesterol was high—it always has been—but then everybody’s is high, including my 90-year-old father’s. Other than that, I have been feeling pretty good, and I didn’t expect any surprises. I saw Dr. H a couple weeks back and got the usual kneading, probing, blood tests, traces and scans. Not surprisingly, I had all the maladies I knew I had, but then I learned I had some othe... Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1298828 Wed, 12 Mar 2008 21:23:59 +0100 1298828 http://www.medworm.com/index.php?rid=1297990&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fsigns-and-symptoms-that-a-crohns-flare-is-coming%2F Today I went for my yearly eye exam. Luckily, there is no sign of glaucoma or cataracts, which is really good since I have been on steroids for so long. Plus there is no sign of inflammation. Crohn’s disease can cause inflammation in many different parts of the body other than your small and large intestines. These include your skin, joints, mouth, throat and eyes. I get the inflammation in all of these except my eyes, which I pray will remain unaffected. Inflammation of the skin can cause inflamed skin nodules on the arms and legs (erythema nodosum), and blue-red skin sores containing puss (pyoderma gangrenosum). I get the erythema nodosum. They are red hot patches on the skin that are very tender to the touch. I have gotten these before and after a major intestinal flare and once all... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1297990 Wed, 12 Mar 2008 17:10:44 +0100 1297990 http://www.medworm.com/index.php?rid=1261873&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fon-this-journey-with-crohns-we-have-each-other-for-company%2F Reading all of your comments and hearing what you go through just makes my heart break. I feel lucky because I haven’t yet had to suffer through any bowel resections and pray that I never will. I am very scared of surgery. This disease is so difficult and causes so much pain, both mentally and physically, that I pray that they will find a cure and ease everyone’s pain. I feel for each and every one of you and I am so happy that you are sharing. It is so hard to talk about this disease and have someone understand. No one around me really gets it and I see that it is the same for a lot of you. I’m also happy to hear about the people who have their loved one’s full support, that’s really great. I have found that because of this blog and being able to share, I am feeling more at pea... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1261873 Wed, 27 Feb 2008 18:22:37 +0100 1261873 http://www.medworm.com/index.php?rid=1246711&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fwhat-is-it-like-for-men-with-crohns-disease%2F I would like to know what it is like for a man living with Crohn’s disease. I know what it is like for me but I don’t know anything about what it is like for a man. I wonder if you have the same fears and concerns as us women. Are you afraid to tell people that you have Crohn’s because maybe they will know what it is and judge you in a bad way? For women (at least for me), I never wanted to talk about anything related to bodily functions or the toilet. I mean, I tried to keep it a secret that I ever went #2 at all. It all seems so silly now, since everybody does it. I just didn’t feel that it was very lady like to mention such things. Now can you imagine having this kind of complex and then developing a disease that makes you go to the bathroom for #2 many times a day – with gas... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1246711 Thu, 21 Feb 2008 06:39:21 +0100 1246711 http://www.medworm.com/index.php?rid=1230434&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fcrohns-disease-and-pain-management%2F Since I have been in a lot of pain the last few weeks, I figured that I would write about pain and pain management in this Crohn’s blog. For me, it is really hard to quantify pain. I hate it when people ask me to tell them out of 1-10 what level pain am I in. I never know. I mean, what if I am just being wimpy and am really only feeling a level 4 but think that it is a level 10? How do I know what a 10 feels like? I sit and stress about what level pain I am really feeling and comparing it to other pains that I know that I have had to try to come up with the correct answer. I also seem to forget pain easily. I mean, I remember that I was in pain but can not really recall exactly what the pain felt like. I know that the kidney stone pain is like there is a person inside with a knife ri... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1230434 Thu, 14 Feb 2008 00:37:53 +0100 1230434 http://www.medworm.com/index.php?rid=1213373&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fis-it-a-kidney-stone-or-is-my-pain-crohns-related%2F Now I am really confused and frustrated. I still have this terrible pain in my right side, and it feels exactly like a kidney stone, but the urologist said today that my kidneys looked good and that the pain was not coming from there. Two weekends ago, I went to the urgent care facility because of this pain and they did a CT scan. The doctor there was a bit wishy-washy and told me that there was a stone in the kidney but there shouldn’t be any pain. He diagnosed me with a kidney stone, gave me a prescription for the pain and sent me on my way. And as usual, I left and then thought of all the questions that I should have asked, for example, how big was the stone? They said that there was blood in my urine and thought that one might have already passed. But the pain kept up, so on Friday I... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1213373 Wed, 06 Feb 2008 23:47:18 +0100 1213373 http://www.medworm.com/index.php?rid=1212341&cid=t_301020_158_f&fid=36024&url=http%3A%2F%2Fblog.healthtalk.com%2Fcaregiver%2Fjeff%2Fwantedcaregiver-bloggers-with-stories-to-tell%2F A wife caring for her elderly husband with Alzheimer’s disease, a widowed woman caring for her wheelchair-bound mother-in-law, a pair of working parents caring for their child with Crohn’s disease, a family pitching in joyfully, or a lone beleaguered caregiver grimly bearing a heavy burden. Caregiving comes in many shapes and colors, each its own unique blend of hard work and compassion, sadness and hope. Caregivers have many different stories to tell and lesson to impart. During the past year blogging about caregiving for my 90-year-old father, I have had my own awareness raised and have thought a lot about the challenges of caregiving, not just in my own and my father’s situation, but also those of other caregivers I know, have heard from or read about. I have often wanted to get s... Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1212341 Wed, 06 Feb 2008 17:59:52 +0100 1212341 http://www.medworm.com/index.php?rid=1208234&cid=t_301020_158_f&fid=36024&url=http%3A%2F%2Fblog.healthtalk.com%2Fcaregiver%2Fjeff%2Fwantedcaregiver-bloggers-with-stories-to-tell%2F A wife caring for her elderly husband with Alzheimer’s disease, a widowed woman caring for her wheelchair-bound mother-in-law, a pair of working parents caring for their child with Crohn’s disease, a family pitching in joyfully, or a lone beleaguered caregiver grimly bearing a heavy burden. Caregiving comes in many shapes and colors, each its own unique blend of hard work and compassion, sadness and hope. Caregivers have many different stories to tell and lesson to impart. During the past year blogging about caregiving for my 90-year-old father, I have had my own awareness raised and have thought a lot about the challenges of caregiving, not just in my own and my father’s situation, but also those of other caregivers I know, have heard from or read about. I have often wanted to get s... Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1208234 Wed, 06 Feb 2008 06:48:32 +0100 1208234 http://www.medworm.com/index.php?rid=1173537&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fterrorized-by-a-kidney-stone%2F I had a couple of pain-free days last week but have been getting pounded by pain with a kidney stone this week. I’ve been in a pretty bad mood because I’ve been in a lot of pain lately. I started to feel the pain last Wednesday but wasn’t sure if it was a stone or just my Crohn’s disease flaring. Then Thursday it was a little worse but not too bad. Friday was the worst, but I still thought that it could be something else. I was in a meeting all day and hate using my sick time. So by the time time I decided to go to the doctor, it was too late. I figured that it would probably go away anyway. Then Saturday rolled around, I couldn’t stand the pain anymore and wound up in the urgent care facility. They did a CT scan and told me that I had a stone inside my kidney but they didn�... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1173537 Wed, 23 Jan 2008 22:35:59 +0100 1173537 http://www.medworm.com/index.php?rid=1156110&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fon-the-road-to-withdrawal-and-a-couple-of-crohns-free-days%2F Well, here I go again. I am going down on my prednisone. I hate going through withdrawal, I hate the prednisone, and I can’t wait to get so low that I won’t have to deal with it so much. It is really easy to go up but very difficult to go down. When I moved back to Texas, I had to go way up on the prednisone due to all the change and all the stress. Every time I had to go up, I got so depressed because I knew that it would be that much longer before I could go back down. I just can’t wait to be completely off prednisone or at least below 10mg. I am now on 20 mg and will stay at this level for a few weeks. It seems that just when I am getting used to being on a lower dose and my emotions are under control and I feel like I can think clearly again, I have to lower my prednisone again... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1156110 Wed, 16 Jan 2008 21:29:57 +0100 1156110 http://www.medworm.com/index.php?rid=1155901&cid=t_301020_97_f&fid=35050&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmaGazette%2F%7E3%2F217683235%2Ftysabri_gets_fda_approval_for.html Biogen Idec Inc. and Elan Corp's Tysabri received U.S. Food and Drug Administration approval to be used in patients with moderate to severe Crohn's disease when standard drug treatments are ineffective.Tysabri was previously FDA approved for the treatment of Multiple Sclerosis but was removed from market in 2005 after three patients using it developed the nervous disorder multifocal leukoencephalopathy (PML). Under restricted distribution the drug was allowed back on the market the following year and Biogen reports that 12,000 MS patients use it with no further reports of the fatal disorder.Crohn's disease patients will have to enroll in a similar distribution program to receive Tysabri. The program consists of educational information regarding the drug'... PharmaGazette blogs http://www.medworm.com/rss/comments.php?id=1155901 Wed, 16 Jan 2008 14:00:41 +0100 1155901 http://www.medworm.com/index.php?rid=1140226&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fworrying-about-complications-from-my-crohns%2F I hope that everyone has made it through the holiday season and didn’t eat too many things that were bad for you. I managed to maintain control of myself and seem to have made it through relatively okay, even if I did eat too much of my mother’s wonderful sweet potato casserole. It is just too heavy for me to eat a lot of and usually doesn’t sit well, but I ate it anyway because I only get it once per year (if that even). Usually when we go to parties, people have all this snack food that I can’t eat. So, I manage to eat less, which is good. But I can see how people could gain a lot of weight this time of year – there are so many yummy looking foods. I went back to my GI and rheumatologist on Wed. of last week. I don’t know why but I usually start feeling better just before I g... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1140226 Wed, 09 Jan 2008 23:09:16 +0100 1140226 http://www.medworm.com/index.php?rid=1126516&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fmy-personal-ten-commandments-for-living-with-chrons-disease%2F Here we are, in a brand new year with a chance at a fresh start. I have decided to start again, but this time with some rules. Today in the tradition of New Year’s Resolutions I’m listing off some things that have been rattling around in my mind. I think I want to designate these as my personal, “Ten Commandments for Living with Crohn’s Disease.” Please send me your comments and we will update them as necessary. This is just my first draft. Thou shall not complain – even when you are justified in doing so. We shall hold our heads high and be strong and take the pain until it passes. We will do this, not only for ourselves but also, for our family and friends. Telling how we feel is not the same as complaining, it is okay to tell but not okay to whine and complain. Thou shall t... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1126516 Wed, 02 Jan 2008 21:47:22 +0100 1126516 http://www.medworm.com/index.php?rid=1119389&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fhappy-holidays-dont-work-too-hard%2F This last week was one of the busiest weeks for me. At the beginning of the week the big boss recruited me for some help on a project, so I have been working late every night to try and catch up and be productive. They decided to have a work-a-thon on Thursday and didn’t really ask me if I wanted or could work late – they just said that we were and they would buy dinner. Like buying dinner is something that would make me say, “Yippie- let’s work all night!” Once they started talking about the work-a-thon, I started to worry. These were higher ranked bosses than the one that I told about my Crohn’s disease. These people don’t really work with me everyday and even if they did I probably wouldn’t tell them. I started to worry about how I was going to get out of this dinner thi... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1119389 Thu, 27 Dec 2007 22:32:15 +0100 1119389 http://www.medworm.com/index.php?rid=1106394&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fthe-spoon-theory-may-help-others-relate-to-your-crohns%2F I have never been able to explain to anyone what it is like to have Crohn’s. Not that too many people have ever asked me what it is like exactly. Most people don’t ask and I for sure don’t tell or go into details. For the last year, I have been really trying to open up more and share more (hence the blogging) and really trying to make my husband understand me. Not the ‘me’ that he thinks that I am but the me that I actually am. The me that includes Crohn’s. I have not been able to explain it to my husband well enough for him to really get where I’m coming from with that part of my life. On my last blog, a comment was made to check out the website and story on ButYouDontLookSick.com : The Spoon Theory, a personal story and analogy of what it is like to be sick. I read this sto... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1106394 Wed, 19 Dec 2007 19:49:46 +0100 1106394 http://www.medworm.com/index.php?rid=1090709&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fhaving-chrons-makes-you-a-master-of-time-managemnt%2F On one of my performance evaluations at work I got called out for time management. I was really upset because I feel like I am the queen of time management. Don’t you feel like you are a king or queen of time management? When you have a chronic illness, you have to be really good at managing your time because there is just not enough time for everything. There is more work that you have to do and there are fewer resources (mostly energy). Good time management skills are critical to disease survival. When you have a disease, you have to be very stringent with your time because you need more rest than a healthy person. We need to make sure to get enough sleep at night (at least 5.5 hours in a row, which is really hard to do when on prednisone) and we need to make sure that we don’t stres... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1090709 Wed, 12 Dec 2007 20:10:43 +0100 1090709 http://www.medworm.com/index.php?rid=1072511&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fout-of-the-closet-disclosing-your-crohns-disease%2F I have come out of the closet – so to speak. I told my boss that I have Crohn’s disease. He is not the boss that is in charge of my work, but the boss that is in charge of my pay raises. I have two bosses since I am a contractor – my company boss and my client boss. I disclosed my Crohn’s to my company boss. We went to lunch last week and I was tired of getting the same ham and cheese sandwich. I usually bring my lunch to avoid the whole situation of being too picky and causing a lot of unnecessary questions. But, lately I have not had enough time to make my lunch every evening because I am taking some Internet courses for work as well as managing my usual work load. The result is that I am always running late in the mornings. So last week I went with my boss to the cafeteria a... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1072511 Wed, 05 Dec 2007 23:20:14 +0100 1072511 http://www.medworm.com/index.php?rid=1057558&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fcatering-to-your-crohns%2F I read the HealthTalk interview with Pearl Jam’s Mike McCready last night and was very inspired. I never think that anyone famous has Crohn’s disease. It is a hard disease and very difficult to hide sometimes. I have always liked Pearl Jam, and now I like them even better. I really like the way that his band seems to support him and accepts his disease. It’s so great! We all face the same obstacles, whether we are in a rock band, teaching a group of students or leading a meeting. When your bowels call, you have to answer. There are things that we can do to make sure that there are no catastrophes during an important event. When I know I have to lead a meeting, I eat a very bland diet during the days leading up to it. Usually, that diet consists of fish (or chicken) with rice and ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1057558 Thu, 29 Nov 2007 02:25:21 +0100 1057558 http://www.medworm.com/index.php?rid=1044229&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fhaving-a-happy-thanksgiving-despite-the-crohns%2F I am getting hungry thinking about all of the pumpkin pies, turkey, sweet potatoes and cakes!!  We have been out of the country for the last five and a half years and have not had a proper Thanksgiving in a while.  Of course, it stinks to have Crohn’s this time of year because I can’t eat hardly any of the yummy food.  But that is a good thing too, because I could see how I could easily gain a lot of weight. This year we are going over to my husband’s parent’s house for dinner.  I am so happy to be a participant and not an organizer. I just want to make one dish and show up and relax.   Every year in France I would have a dinner in honor of Thanksgiving, but it was never on the right day since they don’t have the day off since because it’s not their holiday. I wish that I... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1044229 Wed, 21 Nov 2007 19:37:29 +0100 1044229 http://www.medworm.com/index.php?rid=1030325&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fnovember-check-on-how-is-your-crohns-today%2F We haven’t had an installment of “How is your Crohn’s today?” in a while. I haven’t written one in a while because it doesn’t seem to generate a lot of comments for us Crohnies - it’s a huge success in the MS blog (which is why I decided to try it here). I’m not sure if we should keep it or discuss other things; what do you think? I have read in the comments that some of you are feeling depressed right now. It is really easy to let the depression in; but you have to fight it. Get up, go for a walk, make something, read something, build something, do a crossword, anything – do anything to take your mind off your troubles. Do anything except focus on your troubles. I try to keep myself as busy as I can because sometimes it can all be too much. The prednisone... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1030325 Thu, 15 Nov 2007 18:05:49 +0100 1030325 http://www.medworm.com/index.php?rid=1012549&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Ftoo-many-doctor-appointments%2F Last week, I was busy with Crohn’s treatments. I saw a colon-rectal surgeon, a rheumatologist, and then my gastro doc. The visit with the colon-rectal surgeon was humiliating, of course, but it was good that I had that exam. I am still pretty inflamed and the rectum is not good, but he said it was not bad enough to take the entire colon out yet. He did say that the removal of colon and rectum is the only thing that will fix my problems but that they seem pretty stable right now. He advised me to just manage the way I have been. He also gave me good news that I don’t have to have the seton put back in since this fistula is well-developed and should not close (the seton is placed to keep the fistula open so that abscesses don’t form). I was really happy about this news because I wasn�... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=1012549 Wed, 07 Nov 2007 20:19:51 +0100 1012549 http://www.medworm.com/index.php?rid=995185&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fliving-with-crohns-disease-is-courageous%2F One night I was surfing the Internet and found an article titled “Living with Chronic Illness Builds Courage” by Pauline Salvucci from the Self Care Connection. It was an article that was telling me that I was courageous just by living my life and dealing with my disease. I had never thought of my Crohn’s disease that way before. I have just been living and dealing with things day by day. I never really thought about all the impacts my Crohn’s has on every decision that I make and every relationship that I have. I printed out the article and I carry it around in my purse. I will sometimes read it and think “yes, I am courageous.” I feel good knowing that someone has recognized how difficult it is and has written down what I deal with from day to day. It is a goo... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=995185 Wed, 31 Oct 2007 19:59:41 +0100 995185 http://www.medworm.com/index.php?rid=976578&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fdont-waste-your-healthy-time%2F Time. Let’s talk about time. Time is one of the most precious commodities. It is something that we cannot create more of, we all have equal amounts of and keeps on ticking no matter what we do. Something that you can always count on is the passing of time. It will pass, without fail. And this I depend on. This is how I make it through the pain. I depend on time. I know that if I just wait, the pain will pass – eventually it will pass. Nothing is forever. Just because I feel pain one minute does not mean that I will still feel pain the next. I have to wait and see what will come next. I have to be patient. I know that time will pass, and with time, things change. I don’t just use this philosophy for the pain, I use the same thought process when I am crazy from the prednisone and whack... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=976578 Wed, 24 Oct 2007 21:06:32 +0100 976578 http://www.medworm.com/index.php?rid=959068&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fhiring-a-new-crohns-disease-doctor%2F So I have met my new gastro doctor and am now wondering if I have made a mistake in switching doctors. As I said in my last blog, I decided to switch because I was not sure the first doctor knew what to do with me. This new doctor knew a lot and seemed to be willing to try new options. But I don’t think that I’m ready to try more new options. Every time that I’ve tried a new therapy, I end up worse off or back to where I started. This was the first visit, so I guess that I’ll have to wait and see how it goes. My old doctor’s office was more convenient. I could go see her before going into work and would not miss a lot of time on the job. This other one is in downtown Houston, and it takes me 45 minutes to drive there from work. My thought was that it is better to have... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=959068 Wed, 17 Oct 2007 23:10:45 +0100 959068 http://www.medworm.com/index.php?rid=942029&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Ffiring-my-crohns-disease-doctor%2F I have decided to switch gastroenterologists and will see my new doctor on Wednesday. I decided to switch because I just didn’t get the feeling that my last gastro doctor knew what to do with me. I am a complicated patient. I don’t respond well to any of the medications and am pretty much stuck on prednisone and Imuran (azathioprine). I hate to switch doctors. Once I have answered all of the embarrassing questions and filled out all of the appropriate forms, I am reluctant to do it again. It is my reluctance to start a new relationship that keeps me bound to not so efficient doctors. But this time, I have vowed not to do this. I liked my previous doctor as a person, but I just didn’t think that she had enough knowledge to deal with me. The first time I saw her, she seemed okay, but I... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=942029 Thu, 11 Oct 2007 01:04:10 +0100 942029 http://www.medworm.com/index.php?rid=925543&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fi-have-a-fistula%2F About ten years ago a doctor told me that I had a fistula. I know now that I had no idea back then of what a fistula actually was. I was young and didn’t ask a lot of questions and didn’t really concern myself with it. I didn’t really notice the fistula was all that different from the rest of my terrible bowels. When I moved to Texas, I told my doctor that I had a fistula (I still didn’t really understand what that meant) and she never denied it the entire time that I lived there. So, I am not really certain if she ever really saw a fistula or just took my word for it. Now that I have returned to Texas, I have decided to see a different specialist because I am not sure if my previous doctor ever really knew if I had a fistula or just took my word about it. I remember there were tim... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=925543 Wed, 03 Oct 2007 21:58:36 +0100 925543 http://www.medworm.com/index.php?rid=906331&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fwhy-is-passing-gas-so-embarrassing%2F I am so embarrassed. Today it happened. What I have been dreading and trying really hard to avoid has now come to pass. I passed gas in front of my colleagues and I am sure that they heard it. We had our little team meeting this morning and my insides were not feeling too good from the start. Then during the meeting I could feel them rumbling and knew that I was getting gassy. Usually when I know that I’m gassy I try not to move. Sometimes that can be a problem, especially when someone asks you to come over to their desk. What am I supposed to do? Should I say, “Um can you wait a minute until I am certain that I will not pass gas and embarrass myself?” This problem really stresses me out everyday. There are some days when I have no bloating gassy problems for a few hours but I can p... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=906331 Wed, 26 Sep 2007 20:44:25 +0100 906331 http://www.medworm.com/index.php?rid=888905&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fa-good-support-system-can-make-all-the-difference%2F I was never a healthy person. I think that I just came with some bad parts – mostly a bad immune system (and colon). I sometimes will joke and say that I got the used parts when they put me together. I was a colicky baby. I have had asthma since I was three and am allergic to what seems like everything. I was in and out of the hospital when I was little due to my asthma and then later due to my Crohn’s. My parents carted me back and forth to many doctor visits (including allergy shots three times per week) and never once complained or even made notice that it was an inconvenience to them. Once, they even drove all the way from Atlanta to Florida to pick me up because I became very sick during one of my spring break vacations. They never made me feel bad. They never once in my life told... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=888905 Thu, 20 Sep 2007 19:59:54 +0100 888905 http://www.medworm.com/index.php?rid=883025&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fprednisone-and-insomnia%2F So here I am, awake when I should really be sleeping. I was going to say that the insomnia is probably the most annoying side effect of the prednisone I take for my Crohn’s, but I had to rethink that because most of the side effects of prednisone are troublesome. But the lack of sleep really does play havoc in my life. I want to sleep, really I do - I just can’t. It is like my brain won’t shut up and even though I am exhausted; I have all this energy and desire to do things. So since I can’t sleep, I thought that I would write and tire myself out that way. It is really hard to be on a definite schedule when you have insomnia. I have to wake up early and take my daughter to school and then go to work and be productive. Luckily, I can function without a lot of sleep. But it is a... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=883025 Tue, 18 Sep 2007 18:42:33 +0100 883025 http://www.medworm.com/index.php?rid=864422&cid=t_301020_129_f&fid=36036&url=http%3A%2F%2Fblog.healthtalk.com%2Flife-with-crohns%2Fkelly%2Fnot-talking-about-crohns%2F I don’t know about you guys, but I spend a lot of time NOT talking about my Crohn’s disease. This is one of the reasons why I decided to write for this blog – I never really talk about my disease. I am always very vague and non-specific. I always put on a happy face so that no one will ask what is wrong. If no one can see that you don’t feel good, then they will not ask too many questions. There are other reasons that I put on a happy face, but I think I will write about those in another blog. Today, I will focus on the “not wanting to talk about the not socially acceptable Crohn’s symptoms.” It is just that the symptoms are not really a good topic of discussion. I mean, who wants to talk about bloody diarrhea, lots of pain, gas, bloating, etc…and no one really want... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=864422 Tue, 11 Sep 2007 20:38:40 +0100 864422