I had my first surgery on 3rd September and that was a subtotal colectomy with ileostomy.
My options from that point are…
To keep the ileostomy permanently, this would mean one more surgery where they remove all my rectum and anus and sew everything up! (Barbie butt…)
To have a pouch made out of my small intestine that is attached to my butt so that I can then empty my bowels through my bum and not have an ileostomy any more. This is two more surgeries.
To wait. There is no immediate need to make the decision. I can wait till I’m entirely sure. They like you to make the decision within 3-5 years as the risk of cancer in the rectal stump (least attractive words ever…) increases after this point.
There are pros and cons to all options. I’m dealing with my bag well now, but I just don’t know whether I’m happy to have it forever. The surgery is so FINAL…
But the pouch surgery can be a difficult recovery. They say to give yourself a year to recover. The muscles in my arse haven’t worked for do long that it takes a while to re learn how to use them. The pouch is also quite small and so learning how to use it can take time.
There’s also the thought of two more surgeries which is pretty terrifying.
I’m scared of going back to hospital, I’m scared of being helpless again and I’m scared that the recovery will break me.
BUT I think I have made the decision.
I’m not ready to give up on my arse, as much as my bag is now easier to deal with I just don’t think I want to keep it forever without even trying the pouch surgery. So I’m going to see my consultant in a couple of weeks to let him know that I’d like to move forward.
My life is currently crazy busy, between our family photography business, family stuff, planning our wedding renewal, a summer working with our arts group Responsible Fishing around the UK and a million and one other things, I’m hoping that the surgery could take place after September when things should calm down a little!!
The decision is a big one and I’ve spent a long time deciding what I want to do as well as talking to my husband and a lot of people on forums around the net. Who knows if it’s the right one? If the pouch surgery didn’t work or just wasn’t the right option for me, I now know that I could deal with keeping my bag forever, but I think I’ll regret not trying to regain a more normal life and having the pouch.
I’ll post more after my hospital appointment!