Hello, it has been a couple of years since I have been on here. I have had a J pouch for 33 years. Two weeks ago I had a defogram test due to continual straining and it showed an anterior rectocele. My pouch has prolapsed into my vagina, therefore I was referred to a GYN, who would normally deal with this. But he deals with rectums prolapsing into vaginas, I don't have a rectum. He said he would not touch this as it is to risky, he could easily damage the pouch and that would be life threatening he stated. If he did go in, he would want the color rectal surgeon there and there would be a possibility I would end up with an ileostomy if something happened. He suggested I meet with the surgeon. I have an appointment November 1st. I have been going to the Lahey Clinic in MA for the last 35 years. They were one of the 1st hospitals to do this type of surgery, so I do trust what they say. I'll know more when I see my surgeon. So my question is, are there any women out there who have had this type of prolapse. If so what was your outcome. Live with it, which really isn't an option for me at this point, ileostomy, did your doctor do surgery with good outcome? My husband and I have discussed having the ileostomy and he thinks I should do it. It would definitely give me a better quality of life I believe. I am either straining or have total lack of control. Any advice would be greatly appreciated. Thanks and God Bless.
You may get a much more optimistic assessment from a colo-rectal surgeon, at least if it's one experienced at pouch repair. Just as no one would ever suggest an ileostomy for a rectocele involving actual rectum, a qualified pouch surgeon will most likely want to restabilize your J-pouch. I do suggest you ask the surgeon about his/her experience with pouch repair. It's a much less common procedure than pouch construction. Good luck, and please keep us posted!
Yes my appointment is with the colo-rectal surgeon who did my first operation.
I am 1 week post op from pouch redo. I was having same symptoms as you straining & or total incontanance to the point of zero quality of life. My 20 yr old pouch was stretched out,had a rectal vag. fistula,massive adhesions, infection, hernias, and intestines were intertwined. My gi dr had me on everything-Dx'd it as chrohns disease. It was structural. Happy to say after 9 mo. of the 3 step redo. Feeling great. It's 1 week and only going 5-10 x's with total control.
p.s. Taking no medications
Thank you for replying. That is fantastic. I am very happy for you. What exactly is a pouch redo. I have always believed mine is structural. I have crohn's also but I am not experiencing half of what a lot of people go through. That's why I believe there is more to it than the crohns.
Hi again, I am curious where you had it done. Thanks
Hi Valerie- a pouch redo is - removal of the old pouch & create a new one. Fix all the inner problems (unique to each poucher)mine happened to be structural- my pouch was stretched out & not the chrohns diagnosis. I had all my surgeries done at NYU by Dr Remzi. He's the absolute best for jpouch failures. He and his team did a thorough work up and said to me -yep- its structural. I almost cried with relief. Finally someone gets it. I hope you can get answers for all your discomfort. I was willing to live with the ileostomy if it meant controlling my life. I went out this afternoon and was able to not worry about having to go and not having to go. It's brand new and working great.