Has anyone developed proctitis after a diverting ileostomy?

Posted by GISUE @slangston, May 6 1:05am

Proctitis was found on a colonoscopy. Loop ileostomy was done February 2024. I think about 25% of patients with a diversion ileostomy can develop it.

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Colleen Young, Connect Director | @colleenyoung | May 19 8:03pm

@sansa may have experiences to share with you.

@slangston, are you experiencing symptoms? Are you getting treatment?

Susan F, Volunteer Mentor | @susanf8 | May 27 5:53pm

@slangston are you receiving treatment since they found proctitis? Are there plans to reconnect your loop ileostomy?

GISUE | @slangston | May 27 7:33pm

In reply to @susanf8 "@slangston are you receiving treatment since they found proctitis? Are there plans to reconnect your loop..." + (show)

@susanf8
I can’t undo my diversion Ileostomy because my large intestine doesn’t function properly. I did read an article referring to Proctitis being a localized colitis. Following dairy free could possibly help. Mesalamine enemas caused me severe abdominal cramping, worse than the symptoms, but not everyone has that side effect. There are other options. I’m having a zoom conference with Mayo GI tomorrow. My symptoms were very bad after I had a flex Sig and a 4-5 hour motility study. It is not that severe anymore and the pain comes and goes.

Susan F, Volunteer Mentor | @susanf8 | May 28 8:48am

In reply to @slangston "@susanf8 I can’t undo my diversion Ileostomy because my large intestine doesn’t function properly. I did..." + (show)

@slangston I'm glad you are getting seen! From what I recall, diversion proctitis could be treated with short chain fatty acids, like butyrate. Which... smells like rancid butter. I tried butyrate suppositories as part of a study for my pouchitis back in the 90s. It didn't do much for me, probably because my problem ultimately turned out to be Crohn's Disease.

I hope they can come up with something that works for you! Let us know!

GISUE | @slangston | May 28 12:14pm

Did you have any adverse side effects like worse abdominal cramping than usual? PS… I’ve been going to CRS at Mayo Rochester since April 2024.

Susan F, Volunteer Mentor | @susanf8 | May 28 2:18pm

In reply to @slangston "Did you have any adverse side effects like worse abdominal cramping than usual? PS… I’ve been..." + (show)

@slangston No, it pretty much made no difference at all. It was part of a clinical study, which, I think, didn't find that it was effective for pouchitis (I had a j-pouch at the time). This was at Mayo Rochester as well.

pidge32 | @pidge32 | May 29 1:50pm

Can you please explain just what pouchitis is.
I am having problems with skin irritation around the stoma. Some pretty raw areas and I was wondering if that is pouchitis.

Susan F, Volunteer Mentor | @susanf8 | May 29 3:16pm

In reply to @pidge32 "Can you please explain just what pouchitis is. I am having problems with skin irritation around..." + (show)

@pidge32 Pouchitis is an inflammation of a j-pouch. A j-pouch is an internal pouch made out of the terminal ileum (end of the small intestine)and connected to the rectal muscles and anus. This avoids the need for a stoma and external pouching system.

If you are having irritation and raw spots around the stoma you would probably benefit from seeing a WOCN.

It may be a lot of different things. Maybe the hole in your appliance is too big, or too small. It could be a yeast infection, or it might be a reaction to the appliance material. It could be that you are not changing your appliance often enough, or it might be too often.

When was the last time you saw a WOCN?

pidge32 | @pidge32 | May 29 3:48pm

In reply to @susanf8 "@pidge32 Pouchitis is an inflammation of a j-pouch. A j-pouch is an internal pouch made out..." + (show)

@susanf8
It’s been quite awhile. I have called them once or twice before and the for this problem and they are never in the office. I leave a VM message but never get a call back.

GISUE | @slangston | May 29 5:42pm

In reply to @pidge32 "@susanf8 It’s been quite awhile. I have called them once or twice before and the for..." + (show)

Sounds like you possibly are leaking stool from under your pouch or barrier. Whatever company you use, Hollister, Convatec or maybe Coloplast, they all have support videos and a WOCN, but you need to ask for one when you call. UOAA is a great resource. The annual membership for UOAA is very reasonable. You don’t need to have a membership, but they do send you a nice welcome package. They also have contact information of a Ostomy chapter that is closest to you.