Reversal success after ileostomy removal? Advice needed.

I was in a motorcycle accident last August. Very lucky to be alive. I broke my back in three places. I have done spinal cord damage. I broke 11 ribs and partially collapsed one lung, and the other lung was also affected. This led to being on a ventilator, which then led to having a tracheotomy. This eventually led to pneumonia, and the infection settled in my colon. I couldn't get rid of the infection, so they had to do a total colon or large intestine removal. They say I'm a possible candidate for reversal. They say they would make a pouch in the bottom of the small intestine before connecting it to the rectum. I'm wondering if anyone has had any luck with reversal in this situation or any advice.

Oh, man!  I wish that I had an answer for you, Turt.  But I wanted to commiserate about what happened as you described it.  This is why I became an EX- biker.  I just got a feeling, it crept up on me over a period of a few months, that I was gonna get whacked by some idiot in a car.  It was a very strong feeling, so strong that I sold my bike.  Today I have contradictory vibes:  I wish that I still had it; and I'm thankful that I don't.  I hope all goes well for you from here on out.   Best,  HenryM

Henry, Henry, Henry ... never sell your motorcycle ... tsk, tsk, tsk

Hi Turt.

I have had what you are considering and went into it with the j-pouch being the expected outcome.

The minute I woke up from surgery, I knew something was wrong and from that point it was constant bouts of cuffitis and pouchitis.

I found a website for people who have managed to live with their j-pouches and thought I was on my way. After twelve months of permanently living on antibiotics and codeine, rotating them each fortnight when they lose their potency and not being able to survive 15 minutes without a toilet, I contacted my surgeon and demanded I go back to the ileostomy.

The whole experience was only slightly better than having UC in the first place and after twelve months trying to will myself to get better and losing 15 kg's, it finally broke me.

It was a tough decision to go back to the bag and one I agonized over.

However, now I do anything I wish and have not regretted my decision at all.

I am aware that some folks have had this procedure and have flourished, which is truly wonderful for them, but for me it was twelve months of unnecessary hell.

I was also unable to obtain any meaningful data on the success of this procedure from any reliable source.

Ultimately, all I got from this was the benefit of not spending my life wondering, "maybe this could have worked for me."

Sorry I couldn't supply you a happy ending to your question, but that was my honest experience.

Discuss your next step very thoroughly with your professionals, including "leaking."

I wish you well.

Regards,

Axl

Turt ... my ileostomy was due to 19 years of too much infection. I had an ileostomy put in and the anal resection at the same time. I asked about a J pouch, but too many risks for me. I've learned over the past 2 years to accept it and move on. I'm in the best health now I've ever been in the last 25 years ... so be careful here.
Good luck with whatever you end up with.

Ritz

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

I know...I know.  We all have our idiot moments.

Turt,

I have not had that operation done to me, but I do have some advice. The success rate for the operation you are describing is around 75%. But a lot of things come into play, and you don't want to be that 1 in 4 that isn't successful. The most important thing to ensure you're not one of them is to be as certain as you can that the surgeon/surgical team knows what the hell they're doing, have done it a LOT, and are very good at it. It sounds silly to say, but so many people just go with the surgeon they're told to go see without doing any research or asking the right questions. The outcome of your surgery will determine (to at least a limited extent) how pleasurable the rest of your life will be...........and you're not that old. So this is no time to be shy. Interview at least 3 (or more) highly recommended surgeons and ask them each point blank exactly how they will perform the operation, what their success rate is, why those that were not successful turned out that way, and what post-op recovery will entail. They're not doing you a favor..........you're hiring them to do a job. And you want the job done right the first time with no issues afterward. Every hospital and surgical center has statistics they are required to publish on what they do and the outcomes they achieve..........make sure you see that data. Check post-op infection rates, the number of times corrective surgery was required post-op, etc. The time to ask the pointed questions is BEFORE you're on the operating table being told to start counting backward from 100........not after.

I don't know where you are located, but if it were me, I wouldn't hesitate to travel to a surgical center I determined to be top-notch. I prefer the larger teaching hospitals like Cleveland Clinic, Johns Hopkins, U of Pittsburgh, etc. I wouldn't let a local surgeon near me for such an operation unless he or she could prove unequivocally that they were the best person for the job.

Let me be perfectly clear here..........YOUR outcome will be determined by the skill and knowledge of the people performing your surgery, not probability or accuracy of the general success rate for this operation. Surgeons have a funny habit of explaining how good things can be if all goes well, while neglecting all the fucking shit you'll have to go through if they screw it up. So do the legwork and find the best there is, and trivialize nothing that you're told. I'm wishing you the best!!!

Regards,

Bob

Dear Turt in West Virginia,

In 2016, I also had my colon plus several inches of small intestine removed due to an infection caused by Clostridium difficile bacteria. An infectious disease specialist said that I probably contracted it when I was in the hospital four months earlier with pneumonia. I am in the bathroom every two hours 24/7 to empty the pouch because I am paranoid about having another accident with the watery output so I try to prevent it. I think it is possible for me to have the small intestine attached to the rectum but I fear I would probably have more accidents that I couldn't prevent or control. I would not want to quit my job or be terminated due to accidents where I need to leave work frequently. Try asking the office of the surgeon who performed your ileostomy how many patients had a third surgery to restore the stoma. Best of luck in making a difficult decision.