Ileostomy Reversal - Pain & Recovery - What to Expect?

Been lurking for a month and want to give kudos to all for sharing their knowledge and experience.

Back in the first week of May, I had bleeding diverticulosis and after the first surgery, there was a leak that caused (for the life of me, I can't think of the word) an infection which required a second operation to drain the area that resulted in the ileostomy.

So last week, I met with the surgeon that will be performing the reversal and I'll be meeting with him the beginning of September to schedule the procedure.

But after reading all the horror stories on the forum about the severe pain, near incontinence, and length of time it takes - for the lucky ones - to get back to normal, I'm having second thoughts. It almost sounds as if, after the reversal, you can't be more than a few feet from a bathroom. Which I interpret as being homebound. Of course, the surgeon never mentioned any of this and I had no reason to believe otherwise.

So, are only the unfortunate ones that experience agonizing pain for months on end posting here and not those that came through with flying colors?

Are there any rules of thumb statistically wise, for the chance of ending up with a positive vs. a negative (i.e., months of pain and the rest) outcome?

Please share your experience.

How much of your colon was removed? The colon absorbs the fluids from your body, and the less colon you have, the more likely the need for more frequent bathroom visits. Also, anal sphincter control is tantamount to a successful reversal, as if those muscles were damaged during your previous situation, incontinence is a given. Make your surgeon be more forthcoming with data, statistics, his own success rate, and available reading materials so that you know what you are looking at.

Peace

I had 18 inches of my colon removed and had a colostomy for a year. I had reconnection surgery and have had no pain and very few problems. The few problems I had were solved by taking stool softeners and a mild laxative every day. I eat anything I want (I don't like broccoli so I don't eat it) with no problems. The diverticulitis has not recurred. However, the two extreme surgeries I had have left me weak and vulnerable to abdominal hernias, which simply could not be avoided due to the length and location of the incisions. Go for it!

Hi!

I had my colostomy reversed about 26 months ago. I'm waiting for a second hernia repair now.

I don't know if it's the hernias but I still have pain though it only takes a day at a time away from me. It's not constant.

I don't take stool softeners every day because it makes me feel leaky, so I occasionally have to resort to a heavy laxative.

Before I had my emergency surgery, I think I got critically backed up 4 times with intense pain that resolved itself until the last time when I suffered renal failure and sepsis and all that.

I have far more stomach aches now than I ever did, though I remember as a small child having problems.

Now, it's not excruciating but it does bring me down bad enough I don't function well until it resolves in explosive diarrhea.

For the most part though, I am right as rain! My energy level is back to what it was (could always be better.) I don't have the strength I had but I aged from 62 to 65 so what do I expect?

Oh, by the way, I had MRSA that didn't get diagnosed for 7 months following takedown surgery and then it took 3 3-week treatments of antibiotics but now I'm clear.

So I suggest you go for it! What have you got to lose but that bag attached to your belly?

Charlotte

Thanks so much for asking your question, Not a clue. I am very curious about this myself as I have had such a rough 3 months of it beginning with a stent, then a 2-inch bowel resection to which they still do not know the cause. I suffered 12 emergency hospital visits before anything was done and my surgery was done a month early. I don't know if I can do it again? My surgery was 5 weeks ago so everything is new. I'm terrified to have to do it all over again!

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

I've asked a question about reversal too, mine is in 12 days. I do think on a lot of forums you get negative stories. Not many people write about successes unfortunately. I'm hoping for some though.

Thanks for all the replies and excuse my long delay in responding. Had to close my small shop, give away most of the equipment and supplies, and just generally stumped with what to do next.

Anyway, I'm not sure how much was removed but I'll be meeting with the surgeon to discuss the reversal in early Sept. I'll be sure to ask.

Not really looking forward to another surgery and the subsequent issues. It's been difficult for me to schedule trips to town so that I don't have to look/plan where a clean restroom would be, and post-reversal runs to the bathroom have me envisioning yet more time spent homebound.

My half-hour hikes in the rugged terrain where I live, meant to prepare me for the reversal, are now more or less on hold ;'cause we've had mama bear and her cubs raid the trash on a few occasions. So when I do force myself to confront the wilderness, I'm constantly looking out for her.

Guess I will go through with the procedure take what comes. I'll report back after the visit with the surgeon.

Hi Notaclue. I had the same issues as you. Diverticular infection last year. Nasty. Eventually had bowel resection and ileostomy bag for 3 months. Had reversal 4 weeks ago. No problems. Used bowel before I left the hospital, maybe 2 days after op. Home after 7 days. Didn't use bowel for a few days so was a bit constipated. Used a mild laxative (with advice from surgeon). No problems since. Normal bowel function, eating a reasonable amount of fiber. No urgency, accidents, etc. Been going a bit more often, but completely normal, and believe me, the surgeon said after the first op it was a mess in there, abscess, inflammatory material stuck to the bladder, etc., so it was no walk in the park. Most people have success with this op, I think. Good luck. Ask any questions you need to.

Hi, I have had an ileoscopy reversal 15 days ago. Going to the toilet 30 times a day is driving me insane. I have been taking Imodium tablets; they seem to work better in the morning and they let me get out of the house. If I take them in the afternoon, they don't seem to work as well. I know it will settle down and I won't go as much. Can anyone let me know what they eat and drink that may help or take?

Hey Sickofthis, I had a similar experience minus the Imodium. It does settle down. https://bowelprepguide.com/charts/ The second and third chart is extremely helpful as an eating guide. The intestines have to re-learn and adding foods one at a time like you do with children really worked for me, although I am still finding foods I can no longer eat. When this happens, I go back to the charts to give my intestines a break when it is a harsh reaction. Happy to answer any questions.

Hey notaclue, it is such a personal decision. There is no doubting it hurts. There is no doubting there can be complications. There is no doubting a great surgeon is a must. Just as others have said above, ask lots of questions of your surgeon. Being prepared does help - I wish I had known about this site or had someone to talk with or even a surgeon that gave me any form of information. Happy to answer any questions. Good luck with your decision.

Thanks, I had a look at the charts. I have been eating what's on the chart, but I cut out all fiber. It is only 2 weeks after the surgery, so I can't expect a miracle. The paperwork I had to read through said you would have up to 12 bowel movements a day. I have about 30 a day. Hopefully, in the next week or so, it will settle down. Life isn't meant to be easy.

No worries. I hope it settles for you quickly and doesn't cause any complications. Life isn't meant to be hard either. Don't let the medication professionals fool you - keep at the buggers and good luck.