Hello!
I had my J pouch formed in 1992, lived on and off antibiotics for various reasons with cipro being my favorite until things started to fall apart (iron deficiency anemia, inflamed rectal area) and my diagnosis was changed from UC to Crohn’s in 2012. I then tried Remicade and had great results but unfortunately developed antibodies. I was then on Humira and Cimzia and eventually developed fistulas and had to get a temp ileo in 2016 b/c I was so sick. The diverted J pouch was ok at first but then the mucus discharge became unbearable. After more research and thought, I finally had the J pouch removed and butt closed (Barbie butt) in 2019. Here are my thoughts as brief as can be. I really loved my j pouch and it was very hard to give it up but I felt I had no choice in the end because things got so bad and I was afraid to gamble on more meds. Rather ironic considering I am a pharmacist. The ileostomy has its issues too. It is not just the physical body changes but I am in the bathroom a lot emptying the bag because of the need to drink, drink, and drink some more. I never had hydration issues with my j pouch and only drank a little more than a normal individual would. The j pouch removal is crazy surgery, but totally worth it my opinion, if you are out of options. I got lucky and my butt was sewn shut from the inside. I was sitting on my butt without a cushion in a hard chair 4-5weeks after surgery. Amazing! There are a lot of horror stories out there about the Barbie butt surgery but that was the best part of this surgery for me. I love not having a butt b/c that is where I felt all my issues. I am not sure if you are out of options yet. A big question is what is your diagnosis and will you still have to be on meds after j pouch removal. I have Crohn’s and had my surgery at Cleveland Clinic and they said most people in my situation go on to live med free lives. I tried to follow up with local doctors and everyone wants to throw me on meds because of my Crohn’s diagnosis. If you are going to need meds with or without the J pouch, I would try the meds before getting your j pouch removed just to see if anything helps. I also had a stricture at my pouch inlet but only experienced blockages when I was opened up for other reasons (c-section, removal of ovarian cyst) so why are you having so many blockages? You can still get blockages with an ileostomy so I want to make sure the inlet of the J pouch (not scar tissue?) is your only problem area before you go ahead and have surgery. Talk to your doctor if he/she is useful. If not, try to find a doctor who is useful. I have experience with both. In the end, we can all talk about our experiences forever but you are the only one who knows what you can and can’t deal with. That being said I know it is not easy deciding so if you have any further questions, feel free to message me. Best of luck to you!