Hello everyone. I am curious about opinions, medical experiences, articles or general input on my pending reversal decisions given I have only 5cm of remaining large intestine remaining. Ileostomy October 2016 and my (ahem) bodily function below is healthy and functional.
Should I attempt reverse with only 5cm of large intestine?
Thoughts?
Chris
Hi Chris,
This is the kind of decision only you and your doctors can make. Hi, I'm Marsha, and I've had my ileostomy for more than 50 years, since I was a child of 15. After 4 years of living with ulcerative colitis, my parents finally agreed to my having the surgery. I readily accepted it, because it meant that I could go back to regular school, and have a real life. But they left the rectal stump, thinking that someday, I could be "hooked up". The stump never healed and at 19 I had that removed forever ending the hope of a revision. But I was ok with that, because I never wanted to go back to being tied to a bathroom, living in hospitals, taking meds and all kinds of experimental treatments.
My ex-husband had Crohn's disease, and had an ileostomy as well (That's how we met). They never removed his rectum, but a hook up was never in the cards for him. UC only occurs in the large intestine, but Crohn's can occur from the anus to the gullet. So the disease can reoccur anywhere in the digestive tract.
My cousin had familial polyposa?/cancerous polyps in the large intestine (as did her mother). She had a temporary ileostomy when they removed the large intestine, and a few years later, was re-hooked. She couldn't eat without going to the bathroom immediately after. She went about 20x a day...and I'm not exaggerating. Although she lived with it for quite a few years, she ended up with a J pouch (after the removal of the diseased rectum) and when that didn't work, she had to have an ileostomy....again.
As you probably know, Crohn's is unpredictable, so even if you have a successful hook up, and the remaining large intestine absorbs enough of the excess fluid for you to have a reasonable life, the disease can reoccur at any time. I've lived with my ileostomy for all these years and have no regrets. My ex passed away 4 years ago, due to complications from the Crohn's and other conditions: diabetes, kidney disease, heart attack. Despite having the ileostomy, he had ongoing attacks of Crohn's....until he died.
I wish you the best of luck making your decision. Stay in touch. Marsha
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Hello Chris,
I don't have any experience to give you, but I am having a J-pouch done in November. I don't know if you have ulcerative colitis or Crohn's, but I assume it's colitis if you're looking at having a reversal. All I have left downstairs is the rectal stump, so no colon at all other than that. I'm still doing it anyway. As an 18-year-old, I really don't like the idea of spending the rest of my life with a bag attached to me. I'd never forgive myself if I didn't try it. I've never really had any issues with liquid output, mine has always been quite thick (too much info?), so I'm hoping that my J-pouch will allow me to feel about as close to normal as possible. I've been warned plenty about pouchitis and all of the other complications, but I'm going for it anyway. I've heard very mixed things about the J-pouch. Seems like Marmite: people either love it or they hate it. When are you looking at having your reversal?
Best of luck,
Hamish
Hi, I'm actually close to you. I live in Orléans with a permanent ileostomy. They suggested a permanent cause too many times it can turn around and be a bad experience again, so they didn't suggest a temporary or any reversible surgeries.
I'm Denise and it would be nice to meet. I have to get the paid membership soon to be able to contact people like you, lol.
Greetings from Lakewood, Ohio. I'm Mike. I just came across your profile this morning while browsing on this site.
I've had an ileostomy for many years. I'm just curious about your decision to have a reversal.
I hope things worked out well for you, and that you are well.
Take care.
Mike
Hello
I am in the same predicament that you are in (back medical history)
At 16 years, I had my first emergency surgery from an acute UC flare up that required an operation to remove the large bowel
Afterwards, I became very ill from a burst bowel and septic shock requiring the removal of some of my small bowel
....
Years later, I was looking at getting a reversal which is pretty difficult but not impossible. I am told they can do a take down but to consider the complications that could occur, and was reminded that if they require to abandon the reversal and go to a permanent ileostomy, that would be done
So yes, but it could be with complications.
