Jessica, I had a complete hysterectomy three years after my J-Pouch.  I had no problems.  I had the complete hysterectomy because my monthly periods were extremely bloody.  I was 46 when I had the hysterectomy.  I am almost 58.  Again, no problems; however, I know that I did not have that much scaring from my J-pouch operation.

I would suggest you see about having a colorectal surgeon assist or be on standby in the hospital during your surgery. That way, you are covered if there are any GI complications that are beyond your GYN doc's skill set.

Jan

I had a radical hysterectomy for cervical cancer last year. I have to say the care I had was excellent. My original j pouch surgeon provided all my notes and advice to my gynae surgeon, and as my gynae surgery was at a different hopsital ( my GI care is all at a hospital that deals only with GI issues) a GI surgeon from the second hospital attended the operation, although apparently he was scrubbed he didn't need to actually do anything.

I had several scans prior to the operation to look where various structures were.
My pouch was completely adhered to my bladder and uterus which posed some problems,so that my operation was 5hrs instead of the predicted 3 hrs as a result. They removed all the cancer, but unfortunately found a few cancer cells in one lymph node, which meant I needed follow-up preventative treatment which hadn't been predicted.

Post recovery I had some problems with my bladder, so that had I to keep the catheter in longer than expected but all is well with my bladder now. My pouch was so well behaved post surgery- I have never had it so good. Unfortunately my body couldn't deal with the radiotherapy/chemo combination and even though we tried dropping the chemo element as the radiotherapy was the most important part of my follow up treatment, my pouch just couldn't cope . I had the most awful pain and diarrhoea and even once hospitalised I couldn't cope, also my hips became inflamed and the pain was unbearable. My oncologist declared the treatment toxic and as a result I only had 17 sessions, after which I felt very ill and my pouch was in dreadful shape for about a month. My. GI consultant was pretty convinced I was going to lose my pouch at that point and talked to me about pouch removal so that it was in the back of my mind. I felt so ill I didn't care at that point !

After that month however,my pouch performance gradually improved and for the last 3 months it is the best it has ever been. I have less frequency and no urgency now- my GI says it's my compensation for having a second cancer, lol. I had biopsies last month and apart form the usual inflammation they usually see, the pouch looked fine ,although my stricture has worsened a little and I have to dilate again.

My pouch is much easier to empty now that it used to be- I am wondering whether it has changed position slightly as a result of the hysterectomy.

I am 55 by the way, and they said I had moderate adhesions (I had keyhole surgery for my original surgery which was for colon cancer after 20 years of Ulcerative colitis ).

All in all apart from the hideous radiotherapy/chemo, my experience has been very good.

Hi Jessica, 

I don't have any advice but I am having the same or at least similar issues to what you are having. I was wondering if you had the complete hysterectomy and how it went. I am considering the same thing if I continue to have major problems and pain every time I have my period. It is definitely debilitating and frustrating. 

I hope you are doing better

Amy

Thanks for all of the replies.  I have an appointment with a surgeon who specializes in high risk gyn surgery later this month, just to evaluate and find out what all the options are.  I'm hopeful that surgery might be possible this summer.  I'll post again after I know what's going to happen.

I'm late to this chain but I also had a complete hysterectomy (38 years old), 8 years after my J pouch surgery.  I'm 51 years old now.  I've had no complications, per se.  I have many abdominals adhesions though, which are likely from being opened up so many times ( 4 times total -- two surgeries - J Pouch / hernia related to those surgeries / hysterectomy ).  

So, after consulting the surgeon and running some more tests, it turned out that my gyn doc was wrong.  Even though the radiologist kept saying I had a cyst on my left ovary, the gyn decided that that radiology was seeing my pouch and discounted the results. When the surgeon ordered tests of her own, they showed a 7 cm hemorrhagic cyst.  So we decided to just remove the left ovary and both fallopian tubes. I had the surgery on Tuesday, done using robotic laprosocopy.  My surgeon said that I had really significant adhesions from the cyst to my pelvic floor, and that between the size and the adhesions, it was no wonder I was in so much pain. Despite the pain of the surgery,  I woke up feeling better than I have in years.  I'm eating a very mild, mostly soft diet right now, but my pouch seems to be funtioning normally. 

I'm so glad you have found the cause of your pain and had successful surgery. Wishing you a very speedy recovery and years of good health!

Pain don't lie, eh? Good for you for persisting! Glad you are on the mend. Fingers crossed that the robotic lap helped prevent new adhesions!

Jan