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Thank you, Mary. My GI doc, Bo Shen, formerly from CCF and now in NYC at Columbia Presbyterian has cautioned me that there are instances where women with a J-Pouch who get a hysterectomy have serious problems with their pouch after that surgery. I am 76 years old and have had my pouch for 21 years. I have CLL, a blood cancer that makes me vulnerable to secondary cancers and the gynecological surgeon is recommending a hysterectomy since I am have some problems with my uterus.  Your situation is very encouraging. Thank you again for responding to my question. Take care.

@Joanne posted:

Thank you, Mary. My GI doc, Bo Shen, formerly from CCF and now in NYC at Columbia Presbyterian has cautioned me that there are instances where women with a J-Pouch who get a hysterectomy have serious problems with their pouch after that surgery. I am 76 years old and have had my pouch for 21 years. I have CLL, a blood cancer that makes me vulnerable to secondary cancers and the gynecological surgeon is recommending a hysterectomy since I am have some problems with my uterus.  Your situation is very encouraging. Thank you again for responding to my question. Take care.

Agree, very encouraging Mary. I was also told by Shen to not have any pelvic organs removed unless cancerous as he sees worsening of pouch function. It was a bit hard to stomach as there are lots of gynecologic issues that are painful,  life altering, and have a negative impact on the pouch, so the “save the pouch” at all costs attitude came across as a bit obtuse from such a smart guy. Or maybe it’s just a function of not having a uterus and ovaries ;-)

It's very complicated having leukemia and vulnerable to infections that could be deadly. Any surgery increases the risk of infection. Dr Shen is the pouch expert, probably of the planet so I take his advice seriously, especially if I did have a hysterectomy, the pouch failed and I'd need ANOther surgery to transition back to an ileostomy. Another surgery, another serious risk.

Joanne,

I got my jpouch when I was 29 which was 20 years ago this coming May.  I have FAP.  I had my daughter right before I turned 39.  I had my hysterectomy when I was 45, 4 years ago this coming June.  I had a complete pelvic floor prolapse.  Rectal, uterine and bladder.  It was bad!  I was having fecal leakage, vagina felt like it was falling out and had to pee all the time.  I was worried I would lose my jpouch and didn’t know how they would keep my bladder in place.  When I had my hysterectomy the doctors fixed my prolapses too.  I haven’t had one problem since.  I do have stool leakage here and there but that’s normal.

karen

@ksr posted:

Joanne,

I got my jpouch when I was 29 which was 20 years ago this coming May.  I have FAP.  I had my daughter right before I turned 39.  I had my hysterectomy when I was 45, 4 years ago this coming June.  I had a complete pelvic floor prolapse.  Rectal, uterine and bladder.  It was bad!  I was having fecal leakage, vagina felt like it was falling out and had to pee all the time.  I was worried I would lose my jpouch and didn’t know how they would keep my bladder in place.  When I had my hysterectomy the doctors fixed my prolapses too.  I haven’t had one problem since.  I do have stool leakage here and there but that’s normal.

karen

Glad your better

Thank you for sharing your experience. Can you please clarify what exactly happened? Did you have these prolapses because of a hysterectomy or because of childbirth and it was repaired during the hysterectomy?  In my situation, the gynecological oncologist is concerned that I will develop uterine cancer. I already have CLL, a blood cancer. The pouch specialist, Dr Bo Shen formerly from the Cleveland Clinic and now at NY Columbia Presbyterian is concerned that after 21 years of having a pouch, removing the uterus could affect the functioning of my pouch. Complicated convergence of 3 medical issues is never easy. Thank you again for sharing!

Joanne,

Here is a list of my surgeries:  January 2002 had an intussusception in the small intestine, jpouch in May 2002, emergency surgery due to intestinal obstruction in November 2002 (small intestine was found wrapped around the stomach), benign tumor and left adrenal gland removed in September 2003, c-section 2011, gallbladder 2013, emergency intestinal surgery 2015 (small intestine found surrounded in a ball of scar tissue.  4 liters of fluid pumped out even with an IG tube!), uterine ablation in November 2018, hysterectomy 2019.

Now that you see a list of my surgeries, I can explain things a little better.  Each time I had surgery, I noticed the cramping with my periods would change.  When I had the emergency surgery in 2015, the cramps got a lot worse.  The colorectal surgeon that did my j-pouch surgery that surgery moved right after the 2015 surgery.  If he had been here, he and another doctor would have done the hysterectomy.  The cramping continued until I couldn't handle it.  I couldn't get anyone to help me.  I went to a urogyn and he said he would only do a uterine ablation on me.  I didn't need a hysterectomy.  I knew he wasn't right.  The partner of my colorectal surgeon also said no to a hysterectomy.    I had the uterine ablation and that was the worse thing I could have done!  6 weeks later when I got out of the bathtub, my pelvic floor dropped and it was a rude awakening.  I felt like my rectum was about to fall out of my butt and my vagina was about to slip out and my bladder, well.... I went to several doctors around where I live and got several opinions.  I contacted an individual that I know who knew someone at the Cleveland Clinic to find out who the best colorectal surgeon was in Dallas.  I made an appointment to see him.  It the appointment after examination, his first question to me was, "why haven't you had a hysterectomy yet?"  I told him all the doctors I had spoken with said I didn't need one and they would not help me with that.  He couldn't believe I had a uterine ablation.  He said I needed a hysterectomy and I also needed a test to see how bad my rectal prolapse was.  We knew my bladder was an issue as well.  I had a test to check the prolapse.  I forgot the name of the test, but its where they ram barium up in your rear and you poop it out into a makeshift toilet and a radiologist films you pooping it out to see how bad your rectal prolapse is.  The colorectal surgeon sent me to the best urogyn in Dallas.  Both the colorectal surgeon and urogyn got together and made a plan.  I had surgery and they did the hysterectomy, put the jpouch where it should be and the bladder where it should be as well.  I had so much scar tissue that that part took over an hour.  I was in the OR for over 3 hours.  I was in a very bad situation before I had this surgery.  Now since I had this surgery, I have done better than ever.  It's nice not feeling like my rectum is about to fall out!

Please ask any questions you like.  My advise is to get the best colorectal and gynocologist you can to do the surgery!

Karen

Last edited by ksr

Hi Karen, Oh my goodness, I can't imagine what you have been through for so long. Since my jpouch surgery I have had probably over a dozen small bowel obstructions. I've learned that I am full of scar tissue from the surgical error at the Cleveland Clinic in 2001. That surgery was to try to save a newly constructed pouch that was abscessed. Unfortunately, I was hell bent on having a jpouch and not an ileostomy so I went to the CCF for a pouch redo. The surgeon did not have the wisdom to talk with the surgeon at Johns Hopkins (who did the proctocolectomy and Jpouch construction) and conference with him about my situation. So, at age 54, he redid the jPouch. Unfortunately, he did not wire up the plumbing and essentially created a totally closed digestive system. I had an ileostomy that was producing nothing. Guess why? It was connected to the jpouch and not the rest of my small intestine. I vomited bile for 3 weeks before a fellow at CCF decided to do a test to see what was going on. We found out I did NOT have an ileus, I had an horribly connected GI system that went nowhere. I had emergency surgery, a new ileostomy and corrected jpouch. Like you, it's a miracle we survived. Now, at age 76, I have blood cancer and at great risk for serious infection if I have surgery. My wall of my uterus is twice as thick as it should be for someone my age. The gyno wants to take it out. The hematologist says the risk of infection is too great. I am afraid of more scar tissue, more obstructions and I've had enough of those the most recent of which was two days ago. And the GI pouch specialist is concerned that removing my uterus could disturb my pouch and cause it to stop functioning. Apparently, if I understand correctly, the jpouch is positioned between other organs that keep it in place.   I'll end this long story with this: most of the time I have a good life, am independent, and if weren't for covid, a great life. I need to be checked for uterine changes and if I do have cancer, then I'll have to face the decision and risks involved with that. I appreciate your honesty and hope that you share. It has given me the courage to tell my story. For anyone reading our sharing, I say this.  Go to the best surgeons, gastroenterologists, urologists, etc that you can find. Make sure you understanding the risks and rewards of every choice. Have an advocate that is informed and accompanies you to your appointments. Ask questions and be sure you understand everything. Trust your advocate to pay attention when anxiety may impair you ability to listen and weigh your options.

Take care and stay safe, Everyone

Joanne

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