Crohn's Disease & Ulcerative Colitis Support Group
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 gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Hi everyone, hope you have all been well. I haven't posted in forever, I usually just read but tonight I guess I just needed to vent to people who understand.
Last June I started Remicade and the results were amazing, I couldn't have felt better. My GI & I decided to stop my prednisone in October to see how I would do and because the prednisone was wreaking havoc. Almost immediately I began to have UC symptoms return. All in all they weren't so bad, at least not as bad as they had been before the remicade. It wasn't long and my symptoms were irratic so my GI suggested I take remicade every 5wks instead of 6. That seemed to help but I have never been as good as I was when I was on both remicade and prednisone. I could live with that but now I am getting worse again, severe abdominal pain, 4-6 urgent BM's/day,blood & mucous, fatigue and joint pain. I take something for the joint pain but the down side is that it is very hard on my stomach. To top it off I think I'm having a reaction to the remicade now. I don't even want to think about what life will be like if I have to go off of it.. I am so discouraged and depressed by all of this. I don't know what to do next, stay on remicade. If I even can??? Try a special diet? Go back to asacol? Surgery?
So, there it is. Just feeling confused and frustrated.
Last June I started Remicade and the results were amazing, I couldn't have felt better. My GI & I decided to stop my prednisone in October to see how I would do and because the prednisone was wreaking havoc. Almost immediately I began to have UC symptoms return. All in all they weren't so bad, at least not as bad as they had been before the remicade. It wasn't long and my symptoms were irratic so my GI suggested I take remicade every 5wks instead of 6. That seemed to help but I have never been as good as I was when I was on both remicade and prednisone. I could live with that but now I am getting worse again, severe abdominal pain, 4-6 urgent BM's/day,blood & mucous, fatigue and joint pain. I take something for the joint pain but the down side is that it is very hard on my stomach. To top it off I think I'm having a reaction to the remicade now. I don't even want to think about what life will be like if I have to go off of it.. I am so discouraged and depressed by all of this. I don't know what to do next, stay on remicade. If I even can??? Try a special diet? Go back to asacol? Surgery?
So, there it is. Just feeling confused and frustrated.
I'm so sorry that you are not feeling good again. I soooo know how that feels to finally feel good and have it ripped away! I have suffered for 6 years myself having been on every single medication to include remicade, humira, and all the other stuff. My body was so messed up and would no longer respond to meds that I decided to have surgery knowing that it wasn't a cure but hoping that I could get a nice bout of relief! I had the surgery in June and low and behold I am having problems again at what they think is the surgery site (common for crohn's). I am going in tomorrow for more testing but I just wanted to let you know you're not alone. Having IBD is a grueling terrible thing for anyone to have to deal with!
I have read up so much on what not to eat, what to try such as aloe vera to help ease and heal the intestines to not eating white flower, potatoes, processed foods containing gluten (SCD Diet), Blood Type Diet, ph Miracle, etc, as I also have IBS which I just think is a label they give you when they can't figure out what is going on. Having said that, I wish I could offer you some great advise. The best thing you can do is make sure you have the best doctors. I switched several times myself. If you have any doubt about your care, seek another set of ears!
I hope you can get back on track - I'll be thinking about you!