Loop ileostomy, active disease + rectal discharge

[abrirabroad]

Hello!

New to the forum but have been lurking a while, such a brilliant resource.

I’m early 30s female, had Crohns since I was 14, diagnosed at 17. Between then and now I have had the following surgeries:

2 x bowel resections (terminal/neo-terminal ileum)
3 x adhesiolysis
2 x abscess drainages (caused by enterocutaneous fistula)
1 x ileostomy formation
3 x wound dehiscence clean out

I’m 5 months post ileostomy op, (currently on adalimumab Self inject once a week), still have moderate active disease in small/large bowel and rectum. I’ve been experiencing discharge from my bum which is somewhat abnormal. I’m aware that stool can sometimes still pass through the exiting loop, and mucus production is ongoing, but this discharge is more akin to pus in its volume, smell and colour. It’s a liquid, often can’t control it and it smells purulent, of a yellow colour.

I am wondering whether anyone has experienced this and whether it is of concern?

I have an appoint with my gastroenterologist tomorrow but would love to hear of any lived experience.

Thank you!

 

[abrirabroad]

Had appointment with gastro today - booked in for flexi sigmoidoscopy in a couple of weeks and seeing my surgeon end of this month.

Gastro believes it is likely diversion colitis causing these issues, scope will confirm.

Hesitant to try steroid suppositories as had bad side effects previously.

Only other option for long term total colectomy and proctectomy in the very near future.

Feeling very sad as am only just ‘recovered’ from last surgery 5 months ago…

 

[abrirabroad]

Just in case anyone has stumbled across this thread - had ileoscopy and flexi-sigmodoscopy today and active disease found in sigmoid/descending colon which seems to confirm diagnosis of diversion colitis. Biopsies taken and will find out results soon.

 

[Nadia96]

I have had a total colectomy done when I was 18 which it would be exactly 10 years ago, but they kept the rectum in hoping that I could do a pouch surgery. This was back when they thought it was ulcerative colitis. When I was booked in for the surgery about a year after the colectomy, my surgeon was doing a routine ileoscopy and sigmoidoscopy that he noticed a lot of ulcers on my stoma which put a hold on the surgery. Tests came back to be Crohn’s and that scrapped the surgery altogether.

I was put on lots of different medications before stelara finally worked. The stelara has worked for my terminal ileum, but not for my rectum. I have ended up having lots of strictures and a narrowing in my rectum as well as bleeding and mucus discharge. The surgeon and the gastroenterologist have said that it’s diverticulitis or proctitis which can happen from disuse, but it’s also from the Crohn’s.

I’ve had a meeting with my surgeon a few weeks ago and we’ve discussed about having proctectomy done instead of a having a connection of my small bowel to my rectum as my rectum is really inflamed and if I were to have a connection, it would fail and I would end up having more surgeries down the road.

Next week I do have a sigmoidoscopy with a dilation and an ileoscopy done under general anaesthetic and we’ll see what the results say. But I think either way the surgeons and the gastroenterologists have come to an agreement of a proctectomy which I’m hoping to get done next year

 

[aga]

Strictures and narrowing was caused by medications or just disease?

 

[abrirabroad]

I have had a total colectomy done when I was 18 which it would be exactly 10 years ago, but they kept the rectum in hoping that I could do a pouch surgery. This was back when they thought it was ulcerative colitis. When I was booked in for the surgery about a year after the colectomy, my surgeon was doing a routine ileoscopy and sigmoidoscopy that he noticed a lot of ulcers on my stoma which put a hold on the surgery. Tests came back to be Crohn’s and that scrapped the surgery altogether.

I was put on lots of different medications before stelara finally worked. The stelara has worked for my terminal ileum, but not for my rectum. I have ended up having lots of strictures and a narrowing in my rectum as well as bleeding and mucus discharge. The surgeon and the gastroenterologist have said that it’s diverticulitis or proctitis which can happen from disuse, but it’s also from the Crohn’s.

I’ve had a meeting with my surgeon a few weeks ago and we’ve discussed about having proctectomy done instead of a having a connection of my small bowel to my rectum as my rectum is really inflamed and if I were to have a connection, it would fail and I would end up having more surgeries down the road.

Next week I do have a sigmoidoscopy with a dilation and an ileoscopy done under general anaesthetic and we’ll see what the results say. But I think either way the surgeons and the gastroenterologists have come to an agreement of a proctectomy which I’m hoping to get done next year

Sorry to hear of your troubles! I hope the scope goes okay and you get some clarity.

I am having another surgery/ileoscopy at the end of next month to take a look at the distal end of my loop ileostomy and see how my active disease is doing, before sewing up that section of the loop. Idea is to stoop stool passing down but specialists feel this will also worsen diversion colitis. 2025 will be the year of many surgeries I feel!

 

[Nadia96]

Strictures and narrowing was caused by medications or just disease?

The doctors have said it’s from the disuse, but also from the disease. Ever since I was diagnosed, the inflammation was mostly in my large bowel and rectum.