• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohn's - from ileum and now in colon?

Hi All

I was dx with crohns in my terminal ileum around 13 years ago. I had a resection (ileum) 11 years ago and have been mostly in remission since the resection. I had strictureplasty surgery in 2012 which also showed no crohns was present or active in my ileum.

However for the last 3 months or so I have been experiencing crohns like symptoms. I had a colonoscopy last week which showed some inflamamtion in the large bowel, near the rectum. But none in the ileum. My pain is more central (around and to the left of belly button) that to the lower right side. Although I am still also experiencing some lower right sided pain.

My question is - has anyone ever encountered a situation where they had crohns in the small bowel and were later diagnosed with crohns in the large bowel as well. Is this common?



I am one of those people. I don't know how common it is for it to randomly attack in different areas but I don't think it's that uncommon. Crohn's can affect anywhere from mouth to anus along the digestive tract and can cause many extra intestinal manifestations as well.
I have Crohn's in my ileum, and have lately been having pain closer to my belly button and upper stomach. My doctors are concerned that the Crohn's spread to my colon, so I have to get a colonoscopy at the end of the month. I was also wondering if this was common?


Well, I think it is somewhat common for it to travel from place to place over time. I had fulminant crohn colitis as a teenager, which has been solved by removing the thing. The disease remained quiet for 10 years ish before hurting the small bowel. Seems we can't have enough of just one place...
Sounds like you have taken a page from my crohn's book as well. Mine started with skip lesions in the small bowel, then after about 15 years it moved into the colon as well. It has been pretty well controlled though with a combination of remicade and imuran. The good news? It seems that the small bowel crohn's had gone almost dormant when the colon became the main item.
Saw my GI this mornind and he confirmed that recent biopsies taken during a colonoscopy showed I had crohns active in my large bowel as well as my small bowel.
Looking like prednisone for the forst time in 12 years or so!
Nope. It's not until the end of this month. I can't believe I'm saying this, but I wish it were sooner; I want some answers and I want a treatment plan that will help me feel better. I'm sure on prep day I'll be wondering why I ever said that, though ;)
haha yes most probably. I had a colonoscopy recently and although the prep isnt great the thought/fear of it is probably worse than the actual process.

Good luck
Just been told today it's most likely I'm not actually going to get prednisone but probably infliximab or adalimumab/humira so that's probably better longer term plus hopefully not having to experience the side effects of pred
I took both Remicade (infliximab) and Humira. I felt like the Remicade helped the most, unfortunately I had an allergic reaction. I am really sad that I had the reaction because I loved Remicade-it was a miracle drug the four times I had it! Humira didn't help me at all, but I know lots of other people have gone into remission from both of these drugs. Don't get scared, I'm sure whatever drug you take will help you go into remission!
Remicade, in combination with imuran, have done wonders for me with pretty much no side effects. It literally could be a life changer for you - here's hoping it is!