I know that these surgical treatments can be super confusing, I have explained to lots of family and friends to help them understand what is happening and so thought I would explain on here too.
Firstly, what is a jpouch?
Well, you can have a good read of my explanation here, but in short, a jpouch (also called an Ileo-Anal Pouch or Ileo-Anal Anastomosis) is an internal pouch formed from the end of the small intestine that is attached inside to complete the gastro tube from mouth to butt. It is a ‘replacement’ for the large intestine and cannot be seen from the outside.
So this is what I had, I have no large intestine (colon) and my small intestine was formed into a pouch that was reattached to my bum. Jpouches are pretty rare, they are becoming more common though and are sometimes called a ‘reversal’ after having an ostomy.
So the surgery I had in January was to remove my jpouch, unfortunately for me, it wasn’t working. I had a lot of bouts of pouchitis (inflammation in the pouch) and issues with incontinence. Some people absolutely love their jpouch and find it gives them a whole new lease of life. For me, it wasn’t right and so the decision was made to remove it completely.
I had two options with my surgery, I could of opted for a temporary ostomy, where they would divert my small intestine away from the jpouch and out of a temporary loop ileostomy that would come out of my stomach. This would give my body a rest and allow the jpouch time off. I then could have a further surgery to reconnect it all again in the hope that the rest would have helped my jpouch and I would have returned to having everything connected internally.
Or my other option was the one I chose, I chose to have my jpouch removed completely along with my rectum and anus. So now, my digestive system starts at my mouth, goes down to my stomach and then into my small intestine. They formed a permanent end ileostomy on my stomach and that is the end of my system, I have no large intestine, no rectum and no anus.
This was major surgery and quite a risk but I was at the point where I didn’t want to save my pouch, I was scared that I could have the loop ostomy and rest my pouch and still end up having all the symptoms of pouchitis, I also couldn’t bare the thought of multiple surgeries.
This is a BIG choice to make and anyone facing it should speak to their doctors and get all information and support available to them. The bigger and permanent surgery was the right choice for me, I can only share my own experience but many other people make different options.
I feel a responsibility to try and share all choices when it comes to surgery and treatment as I know so many people read my blog and I would hate for anyone to not explore their own options. You should always speak at length with your own doctors, nurses and surgeons. The internet is a great place for information but it is not always helpful, I love that my little blog can be a tool in your kit to learn more about your illness, but make sure that no one place is your sole info source.
The jpouch didn’t work for me, but I am glad that I gave it a go as I think I would have always been wondering ‘what if’ if I didn’t. But it does work marvellously for so many!