When you get on this path to a jpouch, getting there is hard enough. Considering that it might not work is something that we all sort of pretend is not possible. My jpouch has not been perfect, but I’m going to fight like hell to keep it, and the idea of it leaving, I’ll admit is terrifying. However, there was a time close to my takedown when I said verbally many times, “I’d be ok with a permament ileostomy now, I know I could do it”. The reality of this is a little different, but I had confidence in it at that time. Many of us do.
In my path to find jpouch friends, I’ve found 2 people that I know who have had to have a reversal back to a permanent ileostomy. I wanted to talk about it for a little while, because I think that we all view this is a failure. We failed, our lives will be horrible, and woe is me blah blah blah. Nadia, over at the UCVlog.com has just gone through this process. I think it is really important for all of us to see someone who has had their jpouch removed and are still moving forward with their lives. Nadia has Crohn’s and her jpouch failed for a few different reasons. I think she had chronic pouchitis, lack of blood supply and perhaps some other things. I think she had her jpouch for about 2 years before she had enough problems to have it removed. On her blog, Nadia talked about struggling with the choice to give it up, or try to keep it, and how hard that is. If you’re facing this, I would recommend reading Nadia’s Journey.
I have another amazing friend, Sarah. I met Sarah after her jpouch had already been removed and she had her permanent ileostomy. Sarah is a wife and mother of 4 young children, and went through her sickness, recovery, and sickness again while being a mom. Sometimes after talking to Sarah I realize what a weenie I can be. When I look at Sarah, I see an amazing, beautiful woman, who is smiling in every single picture. When I talk to Sarah about her ileo and when it causes her problems, shes never really bitter or angry. She just get annoyed, which I think is pretty healthy. Before my takedown she was one of my biggest cheerleaders. I was SO worried something would fail or there would be complications. Despite her pouch failure, Sarah still helped me go into my surgery confident. I think shes had her ileo now for almost a year, and while its a pain, I think Sarah has finally come to terms with it and doesn’t let it hold her back from her life and enjoying time with her family. Actually I just got off the phone with Sarah, where she walked me off an anxiety cliff (more about this in a future post). I don’t see/talk to her enough, but I’m so glad that I know shes there.
I don’t know if my pouch will last forever. But finding amazing, strong women like Sarah and Nadia, is what makes me know that anything is possible. Everyone who gets to surgery has been through hell. We all have horror stories of sickness, hospitals, doctors, etc. And we ALL think that we deserve for it all to work out perfectly for us. I just want all of us to remember, that even if it doesn’t work out…its not the end of the world. If you’re thinking about removing your Jpouch….reach out. Find someone who you can talk to, or ask me and I’ll help you find someone. After all, I’m convinced everyone I know now has a butt disease.