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