Pouch surgery after ileostomy – making the decision
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!
Sam xxx
Hi, I’m trying to make the same decision at the moment. Had my surgery last year and the thought of having more surgery at the moment terrifies me. The recovery, having to rely on others, more time of work, my family! So many things to think about!
I’ve looked into pouch surgery, but the recovery and the multiple operations and possible complications scare me. I too after after some initial teething problems am coping well with my bag and wonder if just having the barbie butt op (prefer this to rectal stump removal :D) would just be easier and there would hopefully be less complications and less operations in my future.
The one thing that really scares me and puts me off making a decision any time soon is that after 13 years of being poorly I’m finally enjoying a fairly normal life with my partner and he and I are thinking about the possibility of having a child. I have heard that still having the rectal stump is good to support the baby in the womb, has anyone else heard this?
Plus in general I don’t to go back to how I was.
Your blog is brilliant and so helpful. I see so many similarities in how I feel.
Thank you.
Hi Sarah
Thanks so much for your comment!
I’m scared that after 10 years of being ill, the last 6 months have meant that I haven’t been sick or had toilet issues so I’m afraid of going back to needing to be close to the loo again!
I *think* I’ve made my mind up but I’m going to have a proper chat with my consultant before making the final decision.
I’m so glad that my blog is helping you, it’s so cathartic for me to write.
I’ve no idea about having babies, mine are 9,11 and 13 now so I’m past that stage!!
Best of luck to you, keep in touch xxx
Hi, I’m trying to make the same decision at the moment. Had my surgery last year and the thought of having more surgery at the moment terrifies me. The recovery, having to rely on others, more time of work, my family! So many things to think about!
I’ve looked into pouch surgery, but the recovery and the multiple operations and possible complications scare me. I too after after some initial teething problems am coping well with my bag and wonder if just having the barbie butt op (prefer this to rectal stump removal :D) would just be easier and there would hopefully be less complications and less operations in my future.
The one thing that really scares me and puts me off making a decision any time soon is that after 13 years of being poorly I’m finally enjoying a fairly normal life with my partner and he and I are thinking about the possibility of having a child. I have heard that still having the rectal stump is good to support the baby in the womb, has anyone else heard this?
Plus in general I don’t to go back to how I was.
Your blog is brilliant and so helpful. I see so many similarities in how I feel.
Thank you.
Hi Sarah
Thanks so much for your comment!
I’m scared that after 10 years of being ill, the last 6 months have meant that I haven’t been sick or had toilet issues so I’m afraid of going back to needing to be close to the loo again!
I *think* I’ve made my mind up but I’m going to have a proper chat with my consultant before making the final decision.
I’m so glad that my blog is helping you, it’s so cathartic for me to write.
I’ve no idea about having babies, mine are 9,11 and 13 now so I’m past that stage!!
Best of luck to you, keep in touch xxx