Rectum Issues Post-Ileostomy: Seeking Advice

I have had an ileostomy since 2016! I lost my large bowel through UC, which leaves me with the rectum still intact! Lately, I am having problems with my rectum, like more frequent discharge, pressure, a burning sensation, and a feeling of fullness! I have had biopsies done, and everything is normal! I was just wondering if any members have had issues of this nature. I would like to hear from you!

Hi there and welcome. Others will chime in.

I was on the road when I saw your story. It relates to mine, but I would like some more details. You can view my profile to see my own journey.

In 2016, I also had the large colon removed, keeping everything as you are now until Oct. 2023.

They left what's called a "stump" of the large colon in order to reconnect later. 6 inches.

Of course, after waiting 6 years, that wasn't going to happen.

So tell me about this discharge you have? Mucus? (normal)

Bloody? (not normal)

Pressure? I never had that.

Burning? Nope. Never had that.

And the biopsy you say shows nothing wrong? (That can't be true)

Since I don't know what is coming out of your butt hole, I can only hope it's normal mucus and there are non-surgical solutions to that.

But when you also say the biopsy shows nothing, it makes me think you need a second opinion. Again, not knowing the type of discharge gives me pause to answer in greater detail. So the more you give, the more we can help you.

Hi, thanks for your response. The mucus is clear but more often! The biopsy had to be sent to another lab for further evaluation... no cancer! No blood in mucus! Tried Salofalk suppositories and no change! I said in my post burning would say more like soreness up through! The UC is still active in the rectum, would this be my problem?

Thanks for those details.

How do you understand the UC is still present in the stump? Especially when you say the biopsy was negative. This confuses me. Plus, explain.

The mucus is a normal shedding process. Did they mention proctitis? I had that, which definitely showed blood coming out. It was to a point no meds could help, and after 3 hospital visits inside a year, we had the stump and anus removed and sewn up. But a Ken butt, as it is affectionately described.

So my first impression is if the UC is present, controlling it with foam or suppositories is to your benefit. You are lucky! 😊 Members have gotten away with these meds in lieu of surgery.

If they aren't planning a hook-up, did they explain the stump could become cancerous? That's a game changer. Probably will need this checked every year or less.

How much stump is left? Do you know?

Yes, there are foams and stronger tablets to calm that rectum. Google it or ask the doctor. You are very lucky. I'm almost jealous. 😆

I had rectum problems before it was removed. It was painful and I had no quality of life. I first had a temporary ileostomy, so I still had that dreadful rectum. When they figured out my colon was not working and needed to come out, I told them to please take that painful rectum out along with the colon. I read how so many people had issues from not having it removed. My surgeon agreed since it was causing me so much pain and heartache.

Maybe find a colorectal surgeon who will take it out for you. There is obviously something wrong with it. I had the same symptoms prior to my total proctocolectomy.

G'day, I agree with Hibiscus. I would recommend you give some thought to getting your butt sewn up and getting rid of all the mucus problems. Regards, Iggie

Discharge is completely clear!

Yes... you mentioned the discharge was clear. That's good news. There is a possibility you could have a successful reversal, or stay as you are with meds in rectum or oral meds too. However, the aging process could hurt recovery time if you wait...

Let us know what you decide.

You do seem to be a lucky duck.

Hi!

I had surgery in 1995 due to UC. Ended up with an ileostomy and rectum left intact. Never really had any trouble until a few years later when I was having much the same symptoms as you are having now. My doc called it diversion colitis. He explained that because the rectum is just sitting there not processing anything, the symptoms of UC can return. I have also used Salofalk in the past and it worked okay for a while. Had some trouble with symptoms and used the suppositories on and off over the years. I had a scope done every year just to make sure there were no serious problems. Two years ago, the doc took biopsies and found some precancerous cells. Well, then it was time to have surgery. I got my Barbie butt and have never looked back. Honestly, I'm not sure why I didn't do it sooner. Life has been much better since surgery. I know recovery is never fun, but if your symptoms persist, it's definitely worth talking to your doctor about.