Considering Colostomy Reversal: Seeking Experiences and Advice

Hi friends, I'm new here and would love to hear about others' experiences of those who have had (or considered) colostomy reversal surgery. I was given an unexpected gift of a stoma last November, following bowel surgery and having a Hartmann's. I am mercifully cancer-free and am grateful. I have developed a parastomal hernia that is uncomfortable and sometimes painful.
I have been advised that a reversal operation is feasible, that my muscle and pelvic floor control appears good, and that, as relatively young (early 60s), my surgeon recommends I should go for it. However, I only have about 15% of my rectum remaining (and do have most of my colon intact).
But I am afraid of becoming fecally incontinent with such a reduced rectum. I am told that the body adjusts and the end of the colon would learn to develop as a 'holding area.' But this feels like a risk, and I like to be active and away from the house or town as much as possible. It would be hell to be tied to being near a toilet or washroom all the time. Has anyone else had such a dilemma? I would really appreciate as many responses as possible. I am not seeking medical advice, just reaching out to find others' experiences. Thank you very much in advance and hope.

This is a very personal decision. It carries some risk of fecal incontinence, and not everyone adjusts. Not all doctors explain these risks well.

I'm your age, 63, and it would not be worth the risk to me. But that's my opinion. Some folks have been very successful. You will hear some negative stories... I've read quite a few on here. Those folks will chime in soon.

Hi Philip, As someone with a colostomy (versus an ileostomy), theoretically, you have a better chance of a successful reversal. BUT, that would apply to someone with an intact rectum and colon. Your doctor has explained the risk of incontinence, but does he/she really know how big the risk is and whether your body would adjust as described? I personally wouldn't want to take the chance. Another thing to consider is how well you are functioning with your ostomy. Would living out your life with an ostomy be acceptable to you? Some might say, better the devil you know. I wish you luck with your decision.

Terry

Hi Susan. Thank you very much for that, and I will bear it in mind.

Hi Terry, thank you very much for your reply.

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Hello,

Six months after surgery, I had a consultation with my "most excellent" gastroenterologist about reversal.

The thing you probably are aware of is known as Low Anterior Resection Syndrome (LARS). This is very common, especially in the first year after surgery. Symptoms can include:

• Increased Frequency: Having many more bowel movements per day than before.
• Clustering: Having several bowel movements in a short period, then a period of quiet.
• Urgency: A sudden, intense need to have a bowel movement that is difficult to defer.
• Fecal Incontinence: Difficulty controlling gas or stool, especially liquid stool.
• Tenesmus: A feeling of incomplete emptying.

Even if your colon does adjust somewhat, it takes time, from 1 to 2 years. With only 15% left, more severe LARS is likely. The more rectum that can be preserved, the better the functional outcome. It seems surprising that your surgeon would suggest you go for it. If you decide to proceed with such low odds of a good outcome, you should definitely seek a second opinion from a colorectal surgeon. Your reticence indicates your gut is telling you it is not a good idea.

G-Day Philip,

Totally agree with all the above comments. I had a reversal, but after many, many years, I demanded to go back to having my stoma. Now my life is 100% better than it was.

If you can handle your stoma OK now, then, as stated, "Better the devil you know."

Regards, IGGIE

It's a big decision. My situation is different, but I remember my grandmother had bowel cancer, and she didn't have a stoma, and the surgery affected her ability to get to the washroom in time. After the surgery, she didn't go very far from the washroom. I have a fistula, so I took tons of Imodium just to go anywhere, and now with a bag, it's easier.

Hi, and many thanks for your considered response and points. Very useful.

You're welcome. Good luck!