Hi, I got my J-ouch in 1995 and had a hysterectomy in 2010. Only problem was post-op.  Gas pains and slow bowel wake up were worse than the surgery. Had to be split wide open again for the hysterectomy. I would love to hear others' stories.

Hi, after 20 years with my pouch I was diagnosed with ovarian cancer almost 2 years ago. So I’ve done chemotherapy and had a hysterectomy 18 months ago. Besides the chemo, which was hell for my pouch, I actually think the hysterectomy has made my pouch happier. Not sure why, but I feel like I have a lot less urgency when it’s full. Maybe I have more room? In any case, the hysterectomy hasn’t adversely affected my pouch. My hysterectomy was done robotically and everything was removed through my vagina. Let me know if you have any other questions.

CJ

Here is my problem...I have had a jpouch for 16 years.  In January, I had a "rude awakening" when I got out of the bathtub.  I went to the ER because I thought my small intestine was coming out.  The ER doctor told me I have a bladder prolapse.  He did not look at my uterus or rectum.  I followed up with my family doctor looked and said I have a bladder, uterus and rectal prolapse.  I then followed up with my urogyno and he checked me and said I just have the beginning of a bladder prolapse and do not have a uterine or rectal prolapse and not to do any other problem.  I questioned him about the uterine and rectal prolapse and he said I do not have prolapses in those areas.  My gi doctor sent me for a CT scan.  The scan said I had an intussusception in the small intestine that corrected itself and not to worry about it.  It also said I don't have any pelvic floor prolapses.  (Well I was laying down.  What else would it say.)  I begged my urogyn and gi doctors to send me to the colorectal surgeon because I am having issues with my rectal stump and stool getting stuck then cuts and breaks in the skin happen.  The only one that backed me with all three prolapses was my family doctor, who is a 2nd year resident!  He said he would get me in with the colorectal surgeon and I told him no that I did not want to make the other doctors mad and I would just drive to Dallas and see my back-up colorectal surgeon there.  Last week, I saw my colorectal surgeon in Dallas and he said I do have a complete pelvic floor prolapse.  He told me that I am having intermittent intussusceptions that are correcting itself.  (That should have been a clue that I needed to see my colorectal surgeon.)  He asked me if anyone discussed with me having a hysterectomy and I told him no and that I had asked repeatedly to my doctors about having one.  I am going back to Dallas in 2 weeks to see a high risk gyno for his assessment of my problems and to have more tests in radiology.

Here is what I feel in my body:  I feel like I have pvc pipes running through my body, my rectum feels like it will fall out or that it is falling forward and down.  When I have stool, it does not all come out.  I still have stool stuck in the rectal stump.  I have to then carefully manually get it out with an unscented baby wipe hoping I don't get any cuts or breaks in the rectal stump.  I then use calmoseptine ointment and lidocaine if I need it.  I feel my bladder falling back.  My cervix/uterus is 1" from the vaginal opening.