My husband had surgery at CC in June and has a temporary ileostomy. He is scheduled to see the surgeon for his first post-op visit. He has six months to decide whether to have the J-Pouch surgery or have a permanent ileostomy. Since he still has his rectum, if he decides against the j-pouch, what are the surgical implications of going to a permanent ileostomy. In other words, what would need to be done to make his temporary ileostomy into a permanent ileostomy. It's a good thing we have six months to make a final decision but we want information from those that have made the decision is very helpful.

I had the ostomy and now using the j-pouch. It beats a bag any day at this point. Hope it works out for him.

Nancy, if your husband is a candidate for a J-pouch I strongly recommend he "go for it". On down the line, if he doesn't like it he can always choose to have a permanent ileostomy. I choose to live with my temporary ileostomy for a full year after my proctocolectomy and I felt wonderfully healthy and in control for the first time in so many years. I really was reluctant to have the takedown (reconnection). My son convinced me to try it. Well, I did and that was 5 years ago next week. It has been simply wonderful and as close to or, at times, even better than normal could ever be. Can you help us understand why your husband is reluctant to have the J-pouch?

If he goes for a pemanent ostomy then it is just that, permanent. No going back. With chosing the jpouch, he will never wonder 'what if'. And if the jpouch is not for him for any reason, then you can always go back to getting a permanent ostomy. I know it would be another surgery but at least you would know that you gave it a try.

To make the ileostomy "permanent" they'll have to do a surgery to remove the rectum and anus. They need to do this because the rectal stump can have flares of UC even though the colon isn't attached. Generally, it can be done at time of your husband's choosing. I was told that you can wait years before having it removed.

It's a personal choice. I chose to have a permanent ileostomy done from the start. I believed that there was far less risk in such an approach. J-Pouches do work for the majority of patients. But I had indeterminant colitis, they didn't know if it was Crohn's or UC, so I thought a J-Pouch was too risky for me.

There's basically a 1 in 5 chance for all pancolitis patients that they got the diagnosis wrong, and the person really has Crohn's. I had some inconsistent tests on the subject. They thought I had UC, but they weren't sure. For me it was somewhere between 1 in 3 and 1 in 2.

The failure rate of J-Pouches in Crohn's patients is close to 50%. As my surgeon described it to me, if I really did have Crohn's and went through with the J-Pouch, I could end up with the same symptoms that caused me to need surgery in the first place (cramps, incontinence, fatigue, 15+ bathroom trips per day, etc.)

To me, it wasn't worth the risk of two additional surgeries to have a procedure that could end up not working that well. Also, my surgeon explained the risks of small bowel loss in Crohn's patients to me. That was something I really wanted to avoid.

So, for all those reasons, I chose to have a permanent ileostomy. It's been about a year. I'm really happy with my choice. It turns out that I probably had Crohn's after all, and things are manageable now. I've gotten used to my ostomy, and I'm in control again.

All this said, if they're 100% positive that your husband has UC, a J-Pouch is a good choice. It really has to do with how much risk your husband is willing to accept, and how happy he is with the ostomy. Either way, best of luck.

I prefer not to use the terms permanent and temporary when discussing ileostomies because I think we may be talking about different things and misunderstandings occur.

If your husband still has his rectum, I would presume that what he has now is an end ileostomy (also known as a Brooke ileostomy), this is the same thing as a permanent ileostomy, but of course it would be temporary if the intention was to later have a j-pouch created. If your husband were to decide to keep his ileostomy, nothing would need to be done to make it permanent. However, at some point in time he would likely need to have his rectum removed, particularly if it continued to flare or if dysplasia or cancer developed. But, this is not a requirement, just a recommendation. If he decided to defer on the rectal dissection, he would need to have frequent proctoscopes with biopsies for cancer surveilance. Removal of the rectum is a quite difficult surgery and recovery, similar to that of the j-pouch, with similar risk of complications (except without the risk of pouch issues).

What is often referred to as a temporary ileostomy is usually the diverting or loop ileostomy (sometimes called a double-barrelled ileostomy). This is never considered a permanent structure, even when left long term. It is more difficult to care for and more prone to leaks around the wafer.

One question I have is why does your husband have only six months to decide one way or the other? If he has an end ileostomy and still has his rectum, the decision can be delayed much longer than that. However, I do know that some surgeons do not like to leave the rectal sphincters "dormant" for too long, for fear of muscle atrophy and a possibility of increased difficulties with incontinence after the j-pouch creation. That said, I do know of many who waited at least a year between those surgeries, and one who waited well over a decade; all with fine results. Just something to keep in mind. I would not want you to feel pressured. That said, six months is probably long enough to figure out whether he loves or hates his ostomy.

Jan

Thanks for the information. Jan you are correct about temporary vs permanent. That is where I was confused. My husband has an end ileostomy and Dr. Stocchi is planning to do the j-pouch in six months if that is what my husband wants to do. We were both confused as to what surgery options he may need if he decided that he wanted to keep is ostomy instead of going for the j-pouch. My husband wasn't sure what may or may not need to be done with his rectum if he chose to keep his ostomy. We are meeting with Dr. Stocchi in a couple of weeks for his post-op visit. Your information helps us in preparation for this visit and to know what we need to ask him. Thank you. We also appreciate the encouragement of those that say my husband should try the J-Pouch.