What is Crohns Disease Ulcerative Colitis
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointest...
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Scared and stuck in a ulcerative colitis flare up
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I was diagnosed with ulcerative colitis apprx. 8years ago. since then I have had 2 major flare ups which both of them required going to hospital for 1-2 weeks. During those 2 flare ups iv steroids and prednisone seemed to work.
About 1 month ago I started to notice blood when using the bathroom. This time instead of waiting I went and saw my GI, he gave me prednisone at 40mg/day for 1 week then taper off by 10mg/weekly. The prednisone had little effect and my symptoms seemed to get worse. The week of Oct.12th I was very tired and very snappy towards people. On Oct. 17th I decided to go to the emergency room due to the overnight before I was up every hour or so using the bathroom. I was admitted to my local hospital and they started me on iv steroids. After 5 days in the hospital the dr. there released me on 10/22. He told me to take prednisone and stay hydraded etc. Well the first day and night I was home I had another bad night of bleeding and using the bathroom. I called my GI and he told me I had prob. become immune to the iv steroids and I should go into the city hospital where he works to go on cyclosporine. I was admitted 10/23 a CT scan was done and it came back as fully flared. Well I quickly became very depressed and had major anxiety attacks from being so far from family/friends. I signed myself out of hospital the next day and I was given a oral form of cyclosporine to take from home. Since being home my symptoms go from using bathroom 3 times with no blood to 3 times in a row with blood. I am getting very frustrated. Last night was first night since being home that I was able to sleep right through the night without waking up to use bathroom. But since I woke up I have gone 3 times. I am doing everything I can to fight this flare away but whenever I feel like I gain progress something happens. I think I read to deeply into things online and I start to feel symtoms of other things. Like yesterday and today i feel like my glands are swollen. I called my GI and he says it is prob. just a viral infection and not something to worry about. Today I have an apt. with my primary care dr. to try to get something that will relax me and keep my mind from wondering. This is my first flare up that I have had so much pain associated in my abdomen. Pain has been fairly low all week until this morning when I used the bathroom. I have been watching my diet by eating soups and other bland foods. Any input on similair experiences would be helpful. Thank You Posted on 10/30/09, 08:10 am |
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Sounds like a classic case of UC flare. Surprised your GI isn't more concerned about a viral infection considering you are taking cyclosporine and prednisone-- does he have you on any longer term drugs such as 6MP or Imuran? Even Asacol, or other 5-ASAs? If not, I would seriously consider seeing another GI- Prednisone and the Cyc are not drugs you want to be depending on to keep you in remission and you don't want to be on them long term. You need to be on something to maintain the remission once you get there.
Getting to that point is a process- it sounds like you are getting there though with making it through the night and having some BMs with no blood. Those are all positive signs. This disease is just very up and down- good days, bad days- you never know. I would go from 20 bloody BMs a day to one solid one the next back to 20 the next. Ridiculous. Something you might want to check into are probiotics. Acidolphilus, bifidus, etc. There is one that made a difference for me called Align. Other people on here have used something called VSL#3 (I think) and have said they've had luck with it. I think you have to order it online and it's expensive. Most of them though are over the counter and can be really helpful to giving your colon the tools it needs to overcome a flare and maintain a remission... as far as the pain- keep a pillow in the bathroom and splint your tummy. Heat packs (like a rice and lavendar pillow that you microwave) are also useful for the cramps-- of course you're probably sweating to death on prednisone so using just a regular pillow might be the best bet. Soups actually used to throw me straight out of whack because I got really gassy from them and that added to my pain. I stuck to bland as in variations of bread to absorb the gas and that's it. Bagel in the morning, some sort of fresh baked bread in the afternoon and some plain pasta at night, snacking on plain pita chips. Bananas and avocados were staples too. Good luck. I had UC 20 years and just had surgery but it was a long road to get here, so happy to offer advice if you want more. :) 
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