Living with a Rectal Stump: My Experience and Insights

My rectal stump was something I never gave a thought about. It was there in case I wanted to undergo reversal.
Well.... there's a whole lot more to it.
About 2 years post-op, my stump began bleeding, and I was pooping out blood. Not a huge amount, but enough to get my attention. I visited my most excellent gastroenterologist. He inspected the stump with a scope. Explained I had inflammation from diversion proctitis. OK. What to do about it? Suppositories. Mesalamine suppositories, 1000 mg. I would insert one before bed for 30 days. OK.

After the first one, bleeding stopped. I took all 30, and Mr. Rectum behaved himself... for 2 weeks. Slowly, the bleeding resumed. I could hold it during the day. But sleeping, I'd get leaks. So I borrowed some of my wife's pads. Work great.

I was dismayed. What the hell? So I began researching the rectal stump.

Diversion proctitis or disuse/diversion colitis.
The piece of colon and rectum that make up the rectal stump need stool. Stool provides short-chain fatty acids and helps maintain a healthy microbiome. Since stool is diverted through a stoma, eventually the rectal stump becomes inflamed. Nearly all patients with a rectal stump develop inflammation. Some suffer no symptoms.

Can you just "let it go?" Some patients experience enough blood loss to become anemic. The rectal stump can become ulcerative. In rare cases, cancer can develop. Complicating it all are underlying conditions like IBD, UC, and CD. Quality of life is negatively affected.

What to do? Reversal will restore stool to the area, and inflammation will cease. Barbie butt surgery. J pouch. Medicine can be used with limited long-term effect.

Patients with rectal stumps should undergo regular endoscopic surveillance. Usually a colonoscopy to monitor for dysplasia or cancer.

Welp.... there's no way I'm having Barbie butt surgery. Or reversal. My blood leakage is not too bad. I'm going to ask my most excellent gastroenterologist if I could take mesalamine suppositories until the blood leakage ceases. Stop using the medication. Then wait until it starts up again and use the medicine again. If that's not feasible, I'm just gonna live with it and get used to a pad.

Beach Boy, you are in my prayers. You are a breath of fresh air with your outlook on life. I enjoy reading your comedic posts and about yours and Mrs. B's journeys. You deserve kudos.👏🏻

A really cool guy would get the Barbie butt. 👀

Pfft, who needs a Barbie butt? Because I had rectal cancer, I'll be getting the camera exam on a regular basis anyway. The first one is coming up next week paired with my first colonoscopy through my stoma. What fun!

And just what 👀 would be looking to see if one is cool? 🤔🫣🤭

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Age and tolerance are a big factor ..... BB has researched this topic and the pros and cons.

In his situation, I would do everything possible to avoid surgery.

But I had no choice with IBD.

He has no history of it. So it's different for him. He can control the inflammation with non-invasive measures. How long he can use the meds to control the inflammation remains to be seen. But he has a better chance than most with IBD to control it. He's already a cool cat in my book. Do your thing. Wishing you the best.

The topic of rectal stump bleeding is really a matter of pre-existing conditions. That's my thought. My experience.

I can understand you not wanting any surgery; hopefully, meds clear it. Not in all situations, but the rectum and anus can be removed at times from them going in through your anus to save going through the front. But that's up to the surgeon to say it's possible or not in every case. Mine was removed that way. After a time, your anus usually seals itself up, then they change to MRI scans to check instead of going in with a scope.

Interesting. Laparoscopic through the anus. A topic I'll discuss with my gastroenterologist.

I am concerned about persistent inflammation. Blood levels of C-reactive protein, a measure of inflammation, will rise. Elevated levels are associated with an increased risk of heart attack and other cardiovascular events.

I might be successful living with an inflamed rectal stump. But is it worth the risk of something far worse occurring in the future?

I'm due for my first colonoscopy through my colostomy. I am NOT looking forward to it. I know putting the scope down the stoma is similar to the regular way... but still...

Unfortunately, I've never been cool. Always been the nerdy, brainy kid. In grammar school, administrators wanted to take me out of 3rd grade and transfer me to 6th. My father wisely refused. In high school, I did all my friends' homework for 2 bucks an hour. They thought it was great at the time. They regretted it later as young adults.

Thanks, Liger. I always try to find a little humor in life. Today is my 38th wedding anniversary. It was funny this morning. My wife says, "Happy 28th, honey." I said, "28 years, wow." Then I thought, "What!" I told Mrs. B to check our wedding year. She got a little perturbed at me. "You don't think I know how long we've been married!" she huffed. After confirming it is 38 years, she was amazed it's been that long. Then she trotted off to feed our cat, the Weasel.

Even though today I'm really sick with a cold or flu, I mused: Another day of living the good life.

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The Weasel says hello.

Hello again, my rectally challenged friends.

I've spent many hours researching Mesalamine delayed-release tablets and suppositories. Also available in enema form. The following applies to ostomates with a rectal stump.

My basic question: Why suppository vs. delayed-release pill? Answer: Pill is for folks with active flare UC/proctitis. A person who does not have an ostomy. Delayed release so medicine can be absorbed deeper down the intestines. Risk: Possible permanent kidney damage. Surveillance blood testing required. The taking of probiotics is encouraged. Enema is for those people who do not have an ostomy. There is a risk of physical rectal stump damage using an enema unless you're experienced with the process.

For those of us with an ostomy and rectal stump, 1000 mg Mesalamine suppositories work very well. You are unlikely to damage your kidneys due to less absorption of the medicine into your system. And avoid possible rectal stump damage.

How long can you take Mesalamine suppositories? I've spent a lot of hours reading medical studies, official drug release literature, and actual user experience. Answer: A very long time. A person with UC reported using 1000 mg Mesalamine for 15 straight years with no problem. And it remained effective. Of course, we are all different, but every first-person account I read about using this medicine had no problems.

How are folks using it?

Answer: Some cut the suppository in half because the smallest dosage is 1000 mg. They apply one half in the morning, the other half before bed. Lubricant is required to smooth out the insertion process.

Other folks insert 1 suppository every other day. They say it works well keeping bleeding under control. If they experience a flare, they return to 1 a day until control is achieved. Then back to 1 every other day.

Everyone has regular blood work to check kidney function and is under the care of a doctor.

Main takeaways:

Mesalamine suppository can be taken long-term to manage an inflamed, bleeding rectal stump under the care of a doctor.

Regular blood testing is required to check kidney function.

So that's what I'm gonna do. Except my modification will be to take a 1000 mg suppository every other day. If that fails, then I'll revert to 1 a day.

Great info for those who have these issues. So much information out there; it's difficult to decipher truth from fiction. This is why we need to “take note” of our own bodies/issues. Always trying to seek the correct answers drives me crazy (that's a short drive) because I think I am more than halfway there!!! Thanks for sharing your research; if it helps at least one person, you deserve 👏👏👏 for sharing. jb

I was upset when I started bleeding again, 2 weeks after completing 30, 1000 mg Mesalamine suppositories. I wasn't sure what to do next.

I don't bleed a whole lot at once, but enough to induce me to use the bathroom 4-5 times a day. At night, I started getting leaks.

My gastroenterologist was not too concerned about it after examining me. I was puzzled. So I figured there must be more for me to learn about rectal stumps and inflammation.

Now I know why he wasn't alarmed when I developed bleeding. It actually is to be expected. Except no one mentions this to new ostomates who have a stump. Undergoing reversal within 6 months post-op... inflammation doesn't occur. So it is a non-issue for those ostomy patients.

I'm calling my gastroenterologist Monday to reissue my Mesalamine prescription and alter it to have 3 refills.

I feel better already.

This is the reason research and this site is so helpful. It seems “ostomy” is synonymous with “clueless”…at least that was my experience as a newbie…. It would be helpful if there were some sort of ostomy class following this life/mind-changing surgery - why not,….they offered me a class after a heart attack. But no, they slap on a bag and send you on your way saying “thanks for coming in.”

EXAMPLE …. A couple of months later -

Me: doc, what in the world is this third boob I've developed around my stoma! 🫣

Doc: oh, that's nothing, in fact it is common just get yourself a hernia belt😖 and don't lift anything heavy

In defense of docs, nurses, and the medical field in general, I feel they have absolutely no idea of the impact this surgery has on those of us who had no warning to prepare for this emergency surgery/crisis.

CRISIS - it can be a period of acute emotional distress, where an individual's coping mechanisms fail, which may lead to a person's inability to process information and/or instructions. I believe this may have been the case in my experience, at least for several weeks following it.

Great opportunity for some young entrepreneur ostomate to open a support clinic. Dang, could not think of one great name for this new business….the only thing I could come up with is….ASSistant Guidance jb

Well, I used to see lots of the same style book for many different subjects. But always the same basic title.

Yep.

Barbie Butts for Dummies.

Colostomies for Dummies.

Parastomal hernias for Dummies.

And.......

Inflamed bleeding rectal stumps.... For Dummies.

"Dummies" of course is a misnomer. No one is born with innate knowledge of ostomies, hernias, stumps... etc.

First year post-op is full of unexpected surprises. I'm at 24 months... and still learning.

“Dummy books”  assumes the person likes to read - I tried to read “Dummy’s books about computers…did not compute…

too many alien words to look up…and I realized I was a true Dummy….ostomy shizz would be the same, I think.  I needed verbal instruction on all asspects of a belly butt’s daily requirements …a clinic would have saved me so much grief both physical and mental.  I see an opportunity for a new business here….too bad I am too old to pursue….not much energy or desire left to initiate…but as always I am full of useless ideas ! 🤪😜

I went to a pre-op clinic at my hospital where they instructed me on operation prep, recovery, and ostomy care. It was called the STTAR clinic or something similar. I met with several different people including an ostomy nurse. My memory is a little vague about it because I was so sick at the time. But that was where I was marked for my ostomy placement.  

I think most larger hospitals do something similar. They probably need to do something similar for those who unexpectedly wake up with an ostomy. 

Stomaectomy (Stoma-ick-to-me) was my CRISIS mode….only thing I remember was fear and confusion….jb