- Joined
- Jun 13, 2012
- Messages
- 50
I'm 32 and was diagnosed with Crohn's disease in my terminal ileum about 7 years ago after suffering never ending stomach pain and diarrhea for about 3 years. My GI put me on prednisone and pentasa which did nothing to help, the prednisone just made me feel worse. I think I had every side effect listed...one week it would be night sweats, the next would be joint pain with the always present 'moon' face, acne and insomnia. About 3 months after being diagnosed I found out I had an abscess and was in the hospital for about 5 days (in emergency no less) with a tube in my gut while it drained. I got sent home with the tube for about 2 weeks then went back to get it taken out and told my doctor I just wanted surgery because I couldn't live with the pain anymore. He agreed that surgery was probably the best course for me and about 3 weeks later I had 2.5 feet of small intestine removed. After that I felt great! I stayed on pentasa for a couple of years after surgery until my doctor said i could stop taking it so I was medication and Crohn's free!
That was all good until early last year when I started noticing more frequent pain in my stomach and diarrhea again. I think I was in a bit of denial because I had been doing so well for so long and just didn't want to admit that the Crohn's had come back. I saw my doctor once a year at this point and didn't really mention how I was feeling, kind of making light of things and went on my way. The pain was getting worse so I finally bit the bullet and went to see my GI. He put me on antibiotics (Cipro and Flagyl) and said to see how I felt in a week or so...this went on for a while until I noticed a small lump at the base of my scar from my surgery that was really painful. After numerouse trips to the ER to get ultrasounds, CT scans and someone to take me seriously that something wasn't right, I was diagnosed with another abscess and 'serious Crohn's disease' causing my bowel loops to be stuck together. Back on the prednisone...This time though within a day of starting the pred i felt so much better! The lump was till there but the other problems I was having were gone. Back to the ER a few more times, another CT scan and finally they decided it was an 'intra-abdominal' abscess just inside my abdmonimal wall caused by inflammation that got out of control and perforated my bowel. The other issues I was having were gone but still I was in the hosptial with IV antibiotics and another tube in my gut for 10 days, hoping and praying that it would heal withouth forming a fistula and/or requiring surgery! The doctor said I dodged a bullet as it all healed up as it should. It took 4 weeks for the hole where the tube was to heal after the doctor took it out.
Since that all happened, August last year I started on Remicade. I can't say I felt miraculously better like some people but then I guess I never felt as awful as some do either. It's been a slow and uneventful process but I think it's doing the trick. My blood work comes back good so I guess it's safe to say the Remicade has worked at putting me in remission...but now I think it's caused a stricture! Does it never end?!!? :ywow:
Since roughly my third infusion my stomach has become this growling, grumbling monster...no pain though. That is up until my second to last infusion the end of March, now the grumbling is painful and seems to be getting worse. The pain comes in waves, how I'd imagine contractions to feel! Its really bad for a couple of days then seems to subside, I feel fine for a few days and then it comes back and so on. I have no diarrhea or any other problems really, just the grumbling and contraction like pains...sometimes I feel nauseous too when the pain is really bad but I haven't actually vomited at all.
And now I've written a novel...that's my story and where I find myself now! Thanks for reading :ysmile:
That was all good until early last year when I started noticing more frequent pain in my stomach and diarrhea again. I think I was in a bit of denial because I had been doing so well for so long and just didn't want to admit that the Crohn's had come back. I saw my doctor once a year at this point and didn't really mention how I was feeling, kind of making light of things and went on my way. The pain was getting worse so I finally bit the bullet and went to see my GI. He put me on antibiotics (Cipro and Flagyl) and said to see how I felt in a week or so...this went on for a while until I noticed a small lump at the base of my scar from my surgery that was really painful. After numerouse trips to the ER to get ultrasounds, CT scans and someone to take me seriously that something wasn't right, I was diagnosed with another abscess and 'serious Crohn's disease' causing my bowel loops to be stuck together. Back on the prednisone...This time though within a day of starting the pred i felt so much better! The lump was till there but the other problems I was having were gone. Back to the ER a few more times, another CT scan and finally they decided it was an 'intra-abdominal' abscess just inside my abdmonimal wall caused by inflammation that got out of control and perforated my bowel. The other issues I was having were gone but still I was in the hosptial with IV antibiotics and another tube in my gut for 10 days, hoping and praying that it would heal withouth forming a fistula and/or requiring surgery! The doctor said I dodged a bullet as it all healed up as it should. It took 4 weeks for the hole where the tube was to heal after the doctor took it out.
Since that all happened, August last year I started on Remicade. I can't say I felt miraculously better like some people but then I guess I never felt as awful as some do either. It's been a slow and uneventful process but I think it's doing the trick. My blood work comes back good so I guess it's safe to say the Remicade has worked at putting me in remission...but now I think it's caused a stricture! Does it never end?!!? :ywow:
Since roughly my third infusion my stomach has become this growling, grumbling monster...no pain though. That is up until my second to last infusion the end of March, now the grumbling is painful and seems to be getting worse. The pain comes in waves, how I'd imagine contractions to feel! Its really bad for a couple of days then seems to subside, I feel fine for a few days and then it comes back and so on. I have no diarrhea or any other problems really, just the grumbling and contraction like pains...sometimes I feel nauseous too when the pain is really bad but I haven't actually vomited at all.
And now I've written a novel...that's my story and where I find myself now! Thanks for reading :ysmile:
Have you spoken to your GI about the fact that things are starting to get painful again - it certainly cannot hurt to have things checked as the Remi can play a part with strictures and your previous surgery means you already have scar tissue inside? Last year I had one cut out but initially I didn't feel too awful right at the beginning I just had tummy aches - no diarhhoea either - and then things just gradually got worse and worse as the narrowing got smaller.
