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UC to j-pouch to crohns

N

Nroley

I'm Nicole, I'm 34, I was diagnosed at 18 with Ulcerative Colitis. Dr was surprised at the diagnosis b/c he hadn't seen UC that severe before, but said it was good news it wasn't Crohns. I was 23 when I had to have my colon removed, it was just a mess they said, I had been in the hospital so many times I lost count. I had good luck with my j-pouch, I had almost 9 pretty good years, I had a second baby, things were good. Then slowly symptoms started, stomach pain, weight loss, fatigue, nausea, etc. this escalated over several months. They found some inflammation in my small intestine on a cat scan, never had any thing in my small intestine before. That started the months of scopes, cat scans, followed by flagyl, Cipro, etc. things got worse and a year ago I was in the hospital 4 times in 3 months and had a bowel resection.
I really thought that was it, I was going to feel better. Within a month they found more inflammation, I started Humira in October. It's helped some, but not a lot. I am lightheaded and dizzy all the time, dr doesn't seem to worried. I just don't know what to do,i but live in a small area without many options for GI drs.
I'm frustrated and I feel guilty being unable to do much with my kids. Even if I don't find a solution here I think it will at least be nice to get support and connect with people who understand. :)
 
2

24601

Location
London, UK
I'm so sorry that your period of good health ended and that you're now dealing with Crohn's.

It does sound like the disease isn't under control with Humira. Have you had any recent tests done? Blood tests that show raised inflammatory markers? Perhaps you need your doctor to adjust the dosing of Humira or add in another med like an immunosuppressant or even try a different biologic.

Do you still have the J-pouch? Are there any issues with that?

Hopefully you can get some ideas from others on here, maybe even suggestions for another GI to see if this one isn't working hard to get you well and keep you well. It's really important to hang on to as much small intestine as possible, as well as being healthy enough to live your life too of course!
 
K

Kr81Fl

I am currently dealing with similar issues. I was told I had UC, then Crohn's, then back to UC. Had colon removed, they still thought it was UC. Six months after the reversal and J-pouch surgery, symptoms came back. Pouchoscopy showed inflammation in pouch, and back to calling it Crohn's. I just started Entyvio to see if that will work. Seems like it isn't easy to tell between UC and Crohn's. I have heard quite a few people with this same issue of being told they had UC then Crohn's. Good Luck with treatment.
 
David

David

Co-Founder
Location
Naples, Florida
Welcome to the community. I'm sorry to hear what you're going through :( My heart goes out to you.

1. Have they been doing regular blood tests to check for things like anemia?
2. Have you had your vitamin B12 level tested and your vitamin D level tested? These are common deficiencies with Crohn's that can cause symptoms you're experiencing.
3. Have you tried enteral nutrition?

All my best to you.
 
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