Rectum Closure After Ileostomy Reversal: Seeking Advice

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cjgershman
Oct 26, 2025 12:44 pm

My husband went in to have a gastrogriffin test with an ileostomy reversal scheduled a few days later. It was a total surprise to find the rectum was totally closed. Next week he is going to have a flexible sigmoidoscopy to try to see what the cause is. Has anyone had this happen, and what was the cause and treatment?

Very worried.

Bugs
Oct 26, 2025 1:15 pm

I have Crohn's disease and had colostomy surgery done on May 15th of this year because I have a stricture in my rectum that caused it to become almost completely closed.

Bugs.

Posted by: Nini4

Well,  I  hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression.  He  ticked me off,  but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive. 

I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best. 

But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped,  and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring.  It was then I made myself get out of the dark, and get my sh*t together.  

Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances,  l not only survived but thrived. 

I think of all the years I had suffered with such extreme pain, barely functioning,  and the many hospital stays and how that is all behind me now.  (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)  

So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all.  My Angels, each one of you. 

 And as the Grateful Dead famously said,

"what a long strange trip it's been!"

Im so happy I'm tripping with you all.


warrior
Oct 26, 2025 1:26 pm

Good point as strictures are common with CD.

Not knowing how long the op has had an ileo, or the reason why, could also mean a collapsed rectum.

That's gonna hurt trying to get inside a closed area like that; quite dangerous, I suspect.

Aren't scans a bit safer? Cat scan or MRI?

Think of it as pushing a golf ball through a garden hose. Yikes!

Just an honest suggestion:

SAFER BET, STAY WITH ILEO, FORGET REVERSAL... Get a ken butt.

Yrsae67
Oct 26, 2025 2:12 pm

Hello, about 15 years ago, I had an ileostomy due to UC. The colon was removed, but the rectum remained. About five years ago, it was removed due to pain.

Examination revealed that the rectum was largely closed and that there was also inflammation inside. It's important to explain that in the Netherlands, the surgery only removes the rectum. So, I don't have a "Barbie butt," as they say.

I had an MRI with contrast dye before surgery.

SusanT
Oct 26, 2025 2:14 pm

I've had the opposite problem with staples coming undone in my rectal stump. My surgeon told me, "Believe it or not, it can stay that way."

You don't say why he had the ileostomy. If it was cancer, I would be terrified of a recurrence. I live with that fear myself, and there's little anyone can say to help. If it wasn't cancer, then a new cancer would be very unlikely to appear so quickly. It could be inflammation, scar tissue, or probably a dozen other things. They won't know until the flex sig.

I don't believe this is inherently dangerous. I think the worst case (aside from a tumor recurrence) is that they cannot reverse the ileostomy. If he has substantial colon left, they may recommend going to a colostomy. But he may end up with a permanent ileostomy.

 

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Bill
Oct 26, 2025 6:36 pm

Hello cjgershman.
I am replying to this post partly to be sure I get notifications of any and all replies.

My anus completely closed as result of a botched operation on piles and severe scarring.
What they(different surgeons) did was to reoperate and open the hole. I had to wear a glass dilator for weeks after to keep the hole open. Subsequently, I was left incontinent, which had it’s own problems.
It is so much easier to manage output from a hole on the front of my abdomen (stoma) than it was through my anus. So, at the time, I opted for that solution and have had a stoma ever since.
I still have anal problems, and at the end of next month, I am going in to have it all looked at to see what is wrong and what possibly might be done about it.
If anything useful emerges, I will undoubtedly post on here.

Best wishes
Bill

Heidi B.
Oct 26, 2025 7:28 pm

Good topic! Just six months out from having my entire colon removed with a permanent ileostomy placed. On the subject of rectums, do others get feelings like they need to bear down and push? What about a leaking rectum? TIA!

warrior
Oct 26, 2025 8:21 pm

A closed rectum, surgically closed such as a Ken or Barbie butt, should never leak. That's bad news. Stitches popped, and it won't heal. It happened to me. Twice. First, it became infected. Second, it popped. This occurred over 4 weeks' time. That quickly.

Yrsae67
Oct 26, 2025 9:16 pm

Hi Heidi, if the surgery went like mine, then the entire colon was removed, but the rectum is still there. Even though no food is passing through there anymore, it's still functioning. That explains the urge to go and the loss of fluid and mucus. If the surgery went like Warrior's, you should contact the hospital.

SusanT
Oct 26, 2025 11:52 pm

Like Yrsae67 says... if you still have a rectal stump and an anus, these urges are normal. The rectal stump will continue to produce mucus, which will need to pass.

If the rectal stump and anus were removed a la Barbie butt... then contact your doctor immediately.

Heidi B.
Oct 27, 2025 7:40 am

That sounds dreadful! I have an appointment with my surgeon coming up. Thanks!

Heidi B.
Oct 27, 2025 7:43 am

I keep learning new things! I have a stump - wish I had a Barbie butt; mine's always been as flat as a pancake, lol.

cjgershman
Oct 27, 2025 12:32 pm

It couldn't be treated?

cjgershman
Oct 27, 2025 12:35 pm

I am so sorry to hear all that you are going through.

MedicJay67
Oct 30, 2025 11:37 pm

Thankfully, I've never had any discharge from my Ken butt in the eight years since surgery.

I do periodically get the feeling like I need to push, like I need to go the old-fashioned way! Lol. It's no big deal, and it usually passes quickly.