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Severe ileal crohn's

Hi everybody,
I've been told i've a severe ileal crohn's as I have many pieces of my ileum subject to inflammation and strictures. I have 2 fibrotic strictures, and I had already one surgery for strictureplasty 5 years ago because of multiple stricutres (at least 7). I had no idea my case what that serious and severe as I had no symptoms for many years (I got diagnosed 18 years ago).
Now my gastro is a bit worried as he says in case of surgery and resection it could mean i'd loose maybe 1-2 feet or more of small bowel, and the ileum is vital. I've been on entyvio for 6 months, and it shows efficacy, but i'm a bit worried about the general situation and how it could evolve as i'm only 34.
Is there anyone with similar experience or history that could share how they manage their disease, and how's life after ileal resections?
I had my terminal ileum and a small part of my colon removed. The disease rears it's head every once in a while but no more resections.


Staff member
I had an ileal resection coming up to 9 years ago now! My Crohn's has always been confined to my small intestine, mostly the latter half of it. I lost about a foot of the ileum due to a stricture when I was 11 and have had no problems since then, beyond suspected issues with adhesions, but those have taken a long time to develop and don't yet cause enough issues to truly worry about.

Losing a significant chunk of the ileum (especially towards the terminal ileum end) might mean that you end up having to deal with bile acid malabsorption and reduced vitamin B12 absorption, but if you've already got significant disease there, then the chances are that it's already impaired just by the nature of being so damaged. The ileum is vital, and it's often in the nature of gastroenterologists to want to conserve as much bowel as possible - because we only have so much, after all - but if you have fibrotic strictures, those aren't going to go away as a result of medication, and surgery will likely happen eventually anyway.

What I'm trying to say (although not very well - please excuse me, I'm recovering from 'flu and my brain is fuzzy!) is that, unless the majority of the small intestine is so damaged it needs removal, you'll be okay. I went into remission after my surgery and stayed there for a good few years - really impressive considering my only maintenance therapy at the time was Pentasa! If there's anything more specific you'd like to know feel free to ask, and I hope you find some relief soon :)
I too had a resection lost 13 inches and top of colon. Had my first strictuplasty at 37 resection was at 43. I'm now 51 and to be honest it took some time to adjust to things being moved around and put back in place. I also was on bios remicade cimzia and entyvio. Entyvio being the last. For me and each person is different the bios would last about a year then be less effective with crazy side effects. So I have gone back on Pentasa. I can say in my case I personally feel my last GI waited to long for surgery. Surgery was set for 2 hours took 5 because I was a mess. Again each person is different. I do know looking back I should have gotten second opinion and would recommend that always. Always always. I think some times cause we feel like crap we put faith in the fact doctors are going to help us. But they can't work miracles. I'm not sure about ur area but i have you d most areas have universities that have very good GI departments. Maybe that would be an option.
I also got second opinions almost everytime and saw the best teams in my area and outside.
I just wanted to hear from patients some similar cases of ileal disease to understand how they treated it and how it evolved over years.
From what i heard from doctors, surgery of the ileum has to be limited as it's vital, while colon is not and you can live without it.

I was on humira before, and now entyvio without major side effects so far, so I hope it will work for more than one year. I also heard entyvio works better in the long term and cases of antibodies are rare.
I tried Pentasa almost 20 years ago when the disease started and it did nothing at all... everyone is different probably