Hello j Pouchers lol. This is my first post and I am excited to hear what everyone has to say.
First of all, I was diagnosed with UC when i was 17 ( I am 29 now), and i was completely shocked to hear this. I was extremely devastated. Of course you never think you would be diagnosed with such a terrible disease. I played sports, ate what i wanted , did whatever i wanted whenever i wanted lol.
I started out great, i was in remission for over a year. and i was only taking asacol. Then i flared up and it was never the same after that. I ended up taking every medicine under the sun, 6mp ( got pancreatitis from this), humira, remicade, entyvio, prednisone, lialda, buedesonide and so on... My body ended up building antibodies against all the medicines and the only option was surgery. I chose Mount Sinai Hospital because Dr Greenstein does about 50-100 of these surgeries a year.
In April of 2016, Dr Greenstein at Mount Sinai hospital in Manhattan NY, performed my First of three surgeries, the subtotal colectomy. He removed my entire large intestine. I had a colostomy bag for the next 3 months which was amazing, this was the first time i have been drug free since high school. I felt amazing. I was in hospital for three days and was back to work on light duty after two weeks for recovery.
In july 2016, i went back in to remove my rectum and he created the J pouch out of my Small Intestine. I was in hospital for three days and was back to work on light duty after two weeks. You can actually see thr surgery on youtube if you search, Dr Greenstein mount Sinai Subtotal colectomy. Which is very cool, i watched the videos the night before my surgery lol.
In September 2016, The J pouch Takedown was complete and This one was no joke. I was in hospital for 5 days, cought a fever in the hospital, and now i had to get used to using the bathroom again. The gas pains were excrutiating, i didnt sleep for days and the butt burn was so bad i was in tears. I was home for three weeks and i had to go back to work due to financial reasons. I have not been the same and I sometimes regret getting this j pouch surgery. I would much rather have a colostomy bag. My life was great then. My doctor told me to hang in ther and be patient ( I am not known for patience lol) and that the pouch takes about a year and a half for the pouch to mature and stretch.
Now it is 6-7 months later and i am on Opium Tincture and lomotil, with cipro every day just to not use the bathroom 10 times a day. Some days are great and a lot of the days are bad. i recently had a colonoscopy to check evrything out and the doc said it all looked great.
Has anyone reacted this way or similar to there j pouch takedown? Maybe i need to be a little more patient. After all, i am grateful that i am cured from this terrible disease and my colon cancer risk is almost to zero. Thank you all for reading.
