Reasons People Choose Not to Undergo Reversal

Reasons why so many decide NOT to do reversal? Thank you for your personal opinions!

In my opinion, it fails for starters.

And the shit storm begins in 5..4..3..2..

My decision not to have a reversal was based on two very distinct considerations:

1) The underlying cause of having my stoma was still present and therefore my reasoning was that I would simply revert back to the previous problems.
2) It took me to point that out to the surgeon before he agreed with my reasoning. The inability to work this one out for himself did not raise my confidence in his abilities. 

Best wishes

Bill

I have a colostomy and only had a small portion of my colon removed. I expressed all my concerns about problems others have had that I read about to my surgeon. He believes that I will do all right and I'm otherwise in good health. Though I'm reluctant, I am going to have the reversal.

Any surgery is serious and not without risk. A lot depends on your own physiology and whether you have faith in your surgeon. If you live another 20 years, that's a lot of bags to empty. I hope you get more responses from people who may have gone through a similar situation as yours.

1. I almost died during my initial surgery that took my colon and left me with an ileostomy, and I was in the hospital for 3 months. This was hard on my family. I am 75 and do not want to put them through that again, even though the risk is much lower now that I am healthy again.
2. I have no colon, only my rectum to act as a storage facility. I have no desire to put up with nighttime accidents, much less daytime ones. And I don't like the idea of always having to be near a toilet or knowing how to get to one quickly.
3. In the unlikely (I hope) event that I end up in assisted living, it is much easier for staff to deal with an ostomy bag than to have to clean the bed and its occupant on a frequent basis.
4. I have had my ileostomy for a year now, and I have grown accustomed to living as a front pooper. I have managed to get my toilet trips down to 4-6 a day, rather than the 9-11 it was earlier on.

That said, if I were 10-15 years younger, I may have opted for a reversal. If I had a colostomy and there was plenty of colon left (especially the lower storage bit), I may have chosen differently. Still, it's all major surgery, and there are always risks involved. My high-risk living is behind me. 😎

Daniel

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

Thank you to all who replied. I'm so new to this and find this forum very helpful. My surgeon said he would not even talk to me about reversal for a year.

And..... a lot of things can happen in this year you wait it out.

So get research done. In a year, go into his office fully prepared with questions... and yes, rebuttal answers.

You came to the right place.

Just know several people will agree and several won't that reversals work.

Granted, it may work. How long though?

Did you get told your bull riding days are over too? 🥺😥

I'm a year into a reversal (no colon, not a J-pouch, I have an IRA), so obviously I tried it....but a reversal's success doesn't seem to follow a textbook; rather, it depends on the individual and all their variables (age, reason for surgery, overall health, how much colon, if any, they have left, their surgeon/access to care). My husband didn't want me to try the reversal for two primary reasons: 1) he knows how much I value my independence, and from everything we knew at the time, he thought I would have more control with the ostomy. 2) he absolutely hates when I'm under anesthesia for anything because usually something goes wrong. For me, I knew I would regret not trying.

Sounds to me like you have a great surgeon!!! You need to heal both physically and mentally after initial ostomy surgery. A year's time will give you time to make the right choice for you. Immediately following my emergency ileostomy surgery, all I could think about was, "Wow, what just happened and how soon can I get things back to where they belong?!" I did not have any IBS, Crohn's, cancer, or any of the many serious reasons for the surgery. I had some severe pain that ended up in the hospital and surprise surgery. I had a non-malignant cyst. My surgeon removed the cyst along with my right ovary and appendix and said I could be reversed in a few weeks. For several reasons, this did not happen, and the anticipation of reversal was the only thing I could think about and exist on for a very long time, so I waited. Below is what I called my epiphany. To date, I still have my stoma. My journey started in September 2020, and the following was posted on this site in September 2022, two years later - the reason I never had a reversal.

Sep 02, 2022 7:07 am

Sign, sign, everywhere a sign.

Blocking out the scenery.

Breaking my mind.

Do this, don't do that.

Can't you read the sign?

Scheduled an appointment with my surgeon for September 7th to proceed with the reversal of my 2-year-old ileostomy. Today I finally lost my mind - doesn't really matter because I haven't been using it much anyway.

This morning I was wide awake at 4:30 am. My empty head was filling with thoughts as to "why a reversal - why would I jeopardize, by choice, any of my future when, in fact, I feel really good in the present?"

Then I reflected on a "sign" I was given over the last 2 days.

My first step to expedite the reversal process was to make an appointment with my heart doctor and verify she had my required records - this simple task took me 2 days, which I will never get back. The absurd comedy begins.

Day 1 initial call - I was on hold for 10 minutes, then auto-transferred to the answering service. I was advised someone would call me in 24 hours - never received that call.

Day 2 - my second call. Once again, I was wisely informed by a recording, "if this is an emergency, hang up and dial 911." Then, of course, all the audio recordings regarding COVID rules and regulations and, oh yes, the numerous prompts to press 1 for this and 2 for that. My call then went into the queue for the next available real live body (who was probably in the break room celebrating someone's birthday). That hold then automatically transferred me to the answering service where (of all things) I was asked to hold. Good thing I have a belly bag because a poop at this time would have sent me off the deep end. In all, my total hold time was 33 minutes as I listened to the worst music ever. However, I was productive and managed to pluck a few wild chin hairs to pass the time - but in the end, I never did talk to anyone and hung up in total despair. All this for 2 simple questions.

1. Do you have my records?

2. Can I make an appointment?

Day 3, an epiphany!

Hold the phone! Those 2 days of frustration - were they a sign? If they had been successfully completed, it would have started the ball rolling toward reversal surgery. This decision shall bring forth numerous doctors, endless drugs, bodily pain, and mind-boggling stress - basically everything I try to avoid in my everyday "senior" life. Yet it is exactly what I am heading for, and in the end, there are no guarantees of success. Talk about a change of heart!

This is not for me - decision made. Until such time as a medical emergency, I shall hopefully live in peace.

I called to cancel my surgeon appointment on September 7th - and guess what - the call went straight through to a live body!

Good job on watching for signs!

Right before that huge last tornado in TN, my friend in TN texted me a video of hundreds of crows in her pasture, making lots of noise. She said, "I wonder what Mother Nature is trying to tell us."

News the next day was the terrible tornado in TN. Gotta pay attention to signs and gut feelings! You did GREAT!😸🥳

Here's a response from somebody who would love to have a reversal but cannot. Not a good candidate for it. I was told to go abroad; they are better equipped and take more chances. My cousin accompanied me to Singapore last time but refused to go this time. His reasons: 'If you kick the bucket in Singapore, there will be too much work for me to do, shipping you back home. I can't bury you in Singapore after all.' Humor, I suppose, is the best way to look at these very serious issues.

I am both confused and amused by your post. Confused by: first trip to Singapore did not include a reversal?

Amused: cousin would not go back with you?

Mystical Martha (my nickname) is wondering if that isn't a sign?

Seriously though, my initial desperation to be reversed was never a joking matter, and I can totally relate to anyone seeking reversal. Even today, due to a parastomal hernia, if I were physically suffering with pain, I would definitely get in the nearest line for a reversal surgeon. jb

That was for installing stents and other complications. Excellent medical facilities and care there. They don't believe in open-heart surgery unless very necessary. Very good with arterial stents. I read in a book by David Niven that he knew a screenwriter in Hollywood who earned some extra money by driving the 'human remains' of New Yorkers back to New York from California. An avid gambler, he would stop at racecourses and casinos on the way with the 'remains' parked outside! Best wishes.

G-Day tnmontan9721,

People are sick of me telling this story, but you're new, so here we go again. I had my colon removed and got a J-Pouch, and 18 years later, after 18 years of problems and nighttime accidents on a regular basis, I went back to an ileostomy, and now my life is perfect and easy. Think hard about a reversal. Regards, IGGIE

Same - I have a colostomy and most of my colon left... scared to get a reversal, but my surgeon thinks it will go well. My reversal date is Jan 30. I didn't want to have the regret of not trying, in case I am lucky enough to live another 20-30 years. Am I terrified? Yes... but trusting in my surgeon (and the universe) for a good outcome!

UPDATE:  My reversal was very successful and I am almost 2 years post-op!

Yeah mate, you do sound like a broken record.🤣🤪..(jkjk).

Then again, don't we all give our stories willingly?

Seriously, it's important for new people to hear these stories, so carry on... carry on...

"No sick of it" required.👍😋

My bull riding days were over the first time I had to deal with a horse that did not like me jumping on his bare back at 2:00 in the morning. Lesson learned. Don't sit atop an angry animal that outweighs you by a factor of 10. It even hurts thinking about it 50 years later. I wouldn't even do it sober! 🤕😂

Daniel

I'm at 1 year post-op. Had hernia repair mesh from about 18 years ago slowly migrate into my intestine, eventually puncturing it. Ended up with a colostomy.

Right before this happened, I had 46 radiation treatments for prostate cancer. Radiation causes tissue damage, limiting healing.

I consulted with my surgeon about reversal 5 months ago. He was willing to do it. But I was concerned about possible complications from radiation. Also, I'm 65. Do I really want to undergo major surgery again? Then there's the unknown. Maybe it will heal just fine... but there is the possibility of bloating, cramps, and incontinence. I'm used to the bag. And like Daniel mentioned, if I go to assisted living or my wife has to care for me, a bag is easier to deal with. In the end, I decided against reversal. My surgeon later said, "I wish I had more level-headed patients like you."

I'm not really happy with my stoma; it sticks out quite a bit. I also have a parastomal hernia. But I'm very healthy and have no pain. I work and travel just fine. I survived because I got the colostomy. Other good folks are not so lucky. So, I'll count my blessings and carry on.

UPDATE  10/9/25.

What my Gastro failed to mention:  Diversion Proctitis of the rectal stump.  I had no problems until the start of 2025.  When I started pooping out blood and brown liquid.  After rectal examination by my Gastro.  He declared, Diversion Proctitis.  Inflammation.  He prescribed Mesalamine suppository.  After taking the 1st one, bleeding stopped.  Took one each night.  My life went back to normal.  Until mid September.  When bleeding returned with a vengence.  Plus with occasional cramps.

I  did some research.  Everyone with a rectal stump will get Diversion Proctitis.  70% suffer no symptoms.  30% do.  There is no cure except reversal surgery, or Barbie Butt surgery.  Various medications only work for awhile.  

Eventually, ulcers can form in the stump.  It can become friable (crumble easily).  Also the stump must be checked for cancer.  

Even those without symptoms are at risk.  The rectal stump cannot be ignored.

Now I'm stuck between a rock and a hard place.  Don't know what I will do.

Had some of those stents installed as well…in fact, was my nemesis on my journey to reversal…almost made me stomasidal 🫣

I'm getting a reversal this year. I have a much different story than most. Getting an ileostomy was a choice for me. (I know… weird)

My life before surgery was horrible, so I just wanted a better life. (Which worked.) Now, with a stoma, I'm healthy with no underlying conditions. My surgeon actually recommended me for the reversal. So I'm giving it a shot.

I'd rather try and fail than not try at all.

Saw my surgeon this week. I have 5 hernias. He said the operation to sort them is technical enough and was not offering a stoma reversal, so there we go, have it for life. Downside, I miss farting, lol. All good, I'm still here, alive and kicking. Others out there are worse off, so I'm lucky.

I do not know when I got my stoma until after the surgery. I decided while lying in the hospital bed that I would keep my stoma. I have adjusted well to it. I went through chemo and am doing well now, waiting for radiation and chemo to start this new year. Then I hope to get surgery to remove the damaged lower portion of my colon.

Would you mind commenting on your overall quality of life since having your IRA? I am approaching that junction and will have to decide between reversal or life with an ileostomy…

JO84, I think I went to reply to another comment of yours and got distracted (such is life with ADHD).

Are you looking at heading toward an IRA specifically? What's leading you to that?

As far as functioning with the IRA connection itself, I do okay. I have a general idea of what I can/cannot eat, but occasionally something will catch me by surprise.

Happy to answer any questions. 🙂

Hello,

Correct me if I'm wrong. Having an IRA, there is a possibility of developing proctitis, which in many cases is refractory (resistant) to treatment.

My gastroenterologist never mentioned developing diversion proctitis due to leaving the rectal stump in place and keeping the colostomy. If he would have informed me about it during my reversal consultation...it would have pushed me toward reversal.

Hey Beachboy, good to talk to you again!

I'm sorry the mesalamine stopped working, I know from personal experience how miserable proctitis can be.

If you have a post directly related, let me know and I can dialogue on that post as well.

Simple answer, yes, if the rectum is present, proctitis can happen. I am going to message one of those retired doctors here who don't like to say they are/were a doctor and fact-check myself… so I may circle back to edit, but at this point… I'm going to say I don't know how likely diversion proctitis is to happen with an IRA.

I haven't met anyone with IBD who has an IRA, only J-pouches.

Here's what I know: the rectum likes to be well lubricated, and I think the latest medical idea is that the rectum likes getting its short-chain fatty acids. When it can't get lubricated by all the fun stuff, it can get pissed off/proctitis. If an IRA is functioning like it should, meaning holding waste and releasing it with those sphincter muscles that have excellent control… it should be getting lubricated and absorbing its share of the short-chain fatty acids.

If my IRA/connection stopped working for reasons xyz and I was no longer able to pass waste, I could foresee proctitis happening.

Sorry to hear about the proctitis, Beachboy... I had the beginnings of it (no one ever warned me either), but I was close enough to my reversal date that they just said to live with it if I could, but to call if it got worse. Luckily, I had my reversal before it got worse. During that time, I had read some study about coconut oil being beneficial for it... but I'd have to find that article and re-read it to remember why. I hope you're doing okay!

Thanks for the replies! I appreciate experienced wisdom from Ostomates.

I'm still surprised my gastro doctor, surgeon, and Ostomy nurse neglected to mention the eventuality of developing diversion proctitis. It's a well-known complication of the isolated rectal stump.

I have an interesting update. Researching Mesalamine, I read that continued use after its effectiveness wears off... can make proctitis symptoms worse. So I stopped using it. And boom! Symptoms disappeared immediately. No more bleeding or cramps, no more using the toilet 6 times a day... and best of all, no more wearing a pad. It's now been a couple of weeks, and all is good. I know the inflammation remains. Fortunately, this type of inflammation doesn't raise "C Reactive protein" blood levels.

Next week I visit my gastro doctor and will discuss virgin coconut oil homemade suppository or enema, and if that proves ineffective... aFMT.