When I had the surgery for the J-Pouch, I thought I had closed the door on a very painful and scary chapter of my life.
However, since day 1, this pouch has become my burden, an anchor, for so many of the simple pleasures I used to enjoy.
I believe damage was done to some of the nerves to my rectum. I can keep things in, but only with intense effort. Despite this, I am almost always 'leaky'. The leakiness creates an immense amount of discomfort and pain…as well as embarrassment.
I can't stand for long periods of time. I can't walk safely for more than half a block. Sleeping is a struggle as the irritation and discomfort will often keep me up throughout the night.
I miss hiking. I miss walking through the park with my wife. I miss socializing with friends without putting limitation on what we do. I miss being able to move around normally without having to conduct damage control in the bathroom.
This has affected my ability to live in the moment, as my pouch is a constant distraction. I am short with my dear wife, family, and friends. I have forgotten what it feels like to be comfortable.
I met with a surgeon at Stanford a year ago, ready to schedule a reversal back to the iliostomy. He told me that my decision was extreme, and recommended against it. He wanted to do exploratory surgery to find out why I have problems with control. I left, feeling defeated.
I just want my bag back. It was nothing compared to the challenges I face with this pouch.
Can anyone recommend a good surgeon that will help me with this? Anywhere in the US, I just need to make this happen, and I want it done by someone who cares, takes me seriously, and will think outside of the box to make this work.
Thank you - Cameron
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