Hi Vikster I'm also in the UK.. South of London near Tunbridge Wells. Really sorry to hear about
your troubles.. it's truly miserable. Don't underestimate how bad you're feeling and how awful this can make you feel. You get used to living a different sort of 'normal' and forget how 'healthy' feels. I had only 10 months of utter misery (nothing compared to you) before I made the decision to have a permanent ileostomy.
My story is pretty long and boring but I had colonic dysmotility rather than 'inertia'... same thing though really. Mine came about
after peritonitis last year which damaged the nerves in my colon. I had emergency surgery, partial colectomy, temp ileo but was then plumbed back together and was supposed to work!!! It didn't and after months of head scratching finally decided my colon wasn't going to work again.
I had the choice of a total colectomy but chose to have the bag instead as I'd had a good experience with the bag before and didn't want to risk being on the loo 20 times a day. I virtually had to beg my surgeon to do it though and at the time I felt it was ridiculous to be having this surgery for what essentially was constipation.... now only 3 weeks later I wish I'd done it sooner and can't believe how much better I feel.
When they were figuring out what was wrong with me they talked about
a possible bacterial overgrowth (SIBO) and tried me on antibiotics but they didn't work and I think I underestimated my symptoms at the time too. I also had a spell on this new drug called prucalopride (resolor) which did take the 'edge' off but not enough to make me feel significantly better. So I finally made the decision to go for it... I didn't have much choice to be honest. Live life at 50% feeling sick, bloated, utterly miserable, unable to eat, sleep or function OR have a bag?? it was a no brainer in the end.
The problem is that most surgeons see the creation of a stoma as the last resort and some sort of failing on their part. In my mind this is the solution to my problem - I knew what I was facing and in the scheme of things it's not really a big deal. Just a different way of going to the loo
My consultant said that when he did the ileo this time that he had a look at my colon and it was all long and floppy with little muscle tone - basically it wasn't going to work again. So far I'm SO glad I've done this.
I totally get what 'answers4me2' has to say above - I felt all of that too. It's just miserable. I would be awake ALL night long unable to lie flat, sleep and would have my fingers down my throat trying to make myself sick just for relief. When you're in it you somehow cope.. but when you look back you realise just how bad it was.
I was sooo scared before my surgery but now only 3 weeks later my life is transformed. I'm eating virtually anything and everthing, on Sunday I walked 5 miles and yesterday went swimming. I can't wait to get back running and our summer holiday with my kids is already so much better than it ever could have been when I was sick. The bag is a minor inconvenience ;-)
Life is too short. You have the choice of the total colectomy or an ileostomy? either way.. get rid of that nasty colon or bypass it and you'll feel tonnes better! good luck. Sarah x
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy