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I want a colostomy after having had a ileostomy reversal
I had colorectal cancer in 2003, had surgery where they removed 18” of large colon and replaced my rectum. I had an ileostomy for 8 months, then a reversal. I had two rounds of chemo and one round of intensive radiation therapy. I have suffered with worsening constipation since two years after the surgery. It’s now 2024 and I have used and tried every drug on the market with little to no relief. Two years ago I was diagnosed with a neurogenic bladder and use intermittent catheters to empty my bladder. I was told that it was a result of the radiation treatment that affected the nerves in my spine. I believe this is also the cause for my lack of motility in my bowel as well. I have tried Motegrity to help with this, but it’s not really helpful and it’s very expensive. Has anyone ever decided to go back to a colostomy. I’ve spent so much time in my windowless bathroom and I need a life. My surgeon says there’s nothing wrong with my bowels, but he’s only seeing them through the colonoscopy. The pipes may be perfect but if the pump doesn’t work, nothing works! Help
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Good morning and a Happy Christmas to all. I’ve only just seen this place. After a big spinal operation which didn’t go well, my pelvic organs all failed and I had a major prolapse resulting in a big repair job. After this I experienced chronic and horrible bowel problems. I tried spinal stimulation and this didn’t work. I was offered the ace procedure, which involved washing out my bowel twice a day with some kind of a contraption hung from a hook in the bathroom. After such a long time of suffering with incontinence and constipation alternatively I did not find this solution appealing. At this point I was also intermittently catheterising. After my prolapse which was both pelvic and rectal, part of my colon was removed, but failed to return to normal function. Eventually I was offered an ileostomy and it was explained to me that this was irreversible. Frankly, the idea of just being in control again was very appealing, so I went ahead with this operation. This is called Total pan proctocolectomy. I have never looked back and it has not given me any grief. Subsequently, I also had to have complete removal of everything below, ie; rectum and anus, so there was absolutely no chance of a reversal. I have experienced the odd accident but I soon learnt how to deal with this and how to avoid it. Diet is very important, and I have to be very careful about not eating too late, too much, or too much fibre. I soon learned the foods I was able to eat easily and the ones I should avoid. For instance, an overindulgence of nuts landed me in the ER, for a unpleasant overnight stay with a tube stuck down my nose. I am now very careful these days, but I can honestly say I have never looked back and I am now able to do everything that I did before including swimming regularly. Also, these days there is no shyness attached to having a condition such as mine, and the subsequent solution, which gave me freedom to live my life without restrictions. All the best to anybody contemplating such a procedure, and think about it positively.
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6 ReactionsLa felicito por su fuerza en todo lo que le pasó, felicidades en estas fiestas navideñas.
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2 Reactions@marijo4, I'm glad you found Mayo Clinic Connect and shared your story. Having a total pan-proctocolectomy removing the entire colon, rectum and anus can be very scary. It is helpful and hopeful for other members who may be facing this operation to hear that, for you, the outcome was positive and gave you freedome to live your life without restrictions.
What is one thing you wished you had known that you'd like to share with others?
Thank you for your encouraging reply. The secret is to attempt to view life as a cup half full, not half empty. I try not to think of any of my problems as 'illness' although they certainly are inconvenient. Its really important to stay busy, and continue to do as much as possible and maintain a positive frame of mind.
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3 ReactionsThank you so much for sharing. I can really relate to your comment on "the windowless bathroom." Rturning to a colostomy bag is a realistic option, but a last resort for me. I had way too much trouble with mine. It never stopped leaking, even after professional help.
I no longer have a rectum which I feel is a significant factor in my excessive bowel movements.
I have recently come across information on creating a new rectum. It doesn't sound like the rectum, or lack thereof, is your situation however. Best of luck n your search for relieve.
JIM
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