I'm a J-Poucher from Shanghai, China. (40 Male). I dxed UC in 2007 and had my J-pouch in 2016. One month after my pouch reversal, pouchitis symptoms emerged, And in the later endoscopy examination, the doctor found inflammation and ulcers in my pouch. During that time battling with chronicle pouchitis. I used several antibiotics and biologics. There were ups and downs. When the time turned to 2020, I switched my medication to Entivyo because of insufficient responses from Remicade and Humira. The symptoms started to deteriorate. Frequent incontinence occurs which is unacceptable to me. I'm tired of endless treatment and asked my surgeon for an ileostomy. He gave me an end ileostomy, and then everything improved. I can enjoy any food I want to have. And my weight has been gained since then.
My current problem is diversion pouchitis. In the first one and a half years from pouch diversion, there was no symptom. Like the artificial organ never existed except for routine mucus discharge daily. But from the beginning of this year, I started to feel uncomfortable in my pouch. Sometimes, suddenly felt pain, and spasms in my pouch, followed by a large amount of mucus discharge uncontrollable. Can't hold it for a minute. Very smelly. However, metronidazole can help alleviate the symptoms. But it doesn't go away fully. Somedays were good without apparent symptoms, while the other days were bad.
For this problem, I consulted with several surgeons about pouch removal. Their opinions were quite different. The surgeon who formed my J-Pouch is retired. My current surgeon, the Senior surgeon who works in the hospital in which I had the J-pouch and also one of the best IBD surgeons in Shanghai, said the pouch removal is the way to fix the problem permanently. If I decide to get rid of it, he can do it. He has done around ten pouch removal surgeries previously. And he also mentioned the surgery is tricky. The operating difficulty depends on how extensive the adhesion is. However, before opening my abdomen, you never know. He said that compared with the pouch removal surgery he rather perform a pouch formation surgery. But another two junior surgeons under the senior surgeon don't recommend solving the problem by surgical way. They think within such a big surgery there are some unpredictable facts. It isn't worth risking it unless you have to (for example precancerosis.)
Regarding the pouch removal surgery, I also talked with three other top surgeons who are not based in Shanghai via telephone consultation. Two of them think that removing the pouch is the best solution. And they both said the surgery is not as scary as I think. While the remaining surgeon thinks the same as the junior surgeon mentioned above, from a technically difficult angle and risk-benefit perspective.
I saw the posts on the forum. It seems American surgeons tend to remove the pouch after diversion. I'm curious whether the pouch removal is a must in such a circumstance. And what consequence will be if J-Pouch is abandoned for lifelong?
BTW, since Shen Bo is from China, some top IBD GIs and Surgeons including my current surgeon have strong connections with him. For this connection, my current surgeon trained at Cleveland Clinic a decade year ago. Contributed by rapid industrialization and stressful urban lifestyle, the incidence rate of IBD has dramatically increased in the past decade in China. Especially Crohn's disease.
