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Reply to "Trying to decide between a permanent ostomy or a j-pouch"

I had my ileostomy for many years and other than a few minor appliance leakage issues, exhaustion and the accidents during my sleep, I lead a relatively normal life; in the words of one of my Surgeons " I'd adapted well to life with an ileostomy" but I still chose to have a J Pouch.

I don't know how things work where you are but maybe your Surgeon is applying undue pressure while you contemplate such a huge decision.

My bowel was removed due to UC, with the intention of reconnection 6 or 7 months later, that is, until pathology results revealed I had Crohn's rather than UC; at the time, most, if not all Hospitals within the UK would not perform J pouch surgery on a patient diagnosed with Crohn's.

So, as I was able to have my J pouch created so many years later, I can't see why you must make such a huge decision in a matter of weeks.

Tell your surgeon, it's you and not he/she who will have to live with the results of such a decision; therefore, it shouldn't be taken lightly.

During my time with the ileostomy, other than taking Loperamide to slow and thicken my output and Omeprazole for acid reflux, I was kinda medication free and flare up free, which proved I didn't actually suffer from Crohn's.

I was re diagnosed with indeterminate Colitis; and  therefore, qualified for J Pouch surgery.

Opting for a J pouch is the best decision I've ever made and self awareness and body image was a huge factor as to why I disliked the ileostomy and colostomy bag.

A J pouch, is often regarded as the new normal and for myself; my new normal is 95% normal.

I use the toilet like everyone else, no supplies to be carried around or special wash routine, the only exception are the number of visits to the toilet during a day, which isn't necessarily an issue; there's never any urgency, bed time leaks or accidents, although I do experience episode of leakage during the day, sometimes heavy, certainly not pleasant.

I have 3-4 BM per day, never less than 2 and rarely more than 5, if it is, it's normally due to something I've ate but it does vary from day to day.

Visits to the bathroom can be hours apart, thus appearing perfectly normal to work colleagues and those around, also, if necassary, output frequency can be controlled by use of Loperamide and when I notice a difference, i double the dose.

No disturbed sleep or night time bathroom visits either, which can also be controlled by use of Loperamide should they occur.

As I said earlier, such a decision shouldn't be taken lightly; opt for the ileostomy but retain the rectal stump, this will provide time to recover and prepare for the next procedure.

If the surgeon who removed my bowel also removed my rectum at the same time, then I wouldn't have been able to have a J Pouch so many years later.

Last edited by Former Member
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