TOTAL COLECTOMY

Hy CACSY,
I'm in the same boat as you - and finally after years of doctors and tests and medications, I was offered the option of a total colectomy. I am having the surgery this coming Tuesday. I am scared, but I am more scared of living every day the way I currently do. I too, have the pregnant belly after eating, wearing jogging clothes every day, I took all kinds of medications but they either didn't work, or had side effects.

I know it is such a hard decision but so many people on this forum don't regret having their colon's removed. You just have to think about your quality of life as it is now, can you deal with it or are you at your wits end?

If it helps, I will be updating on this forum as much as I can, as I go through the recovery of the surgery, maybe it will be helpful for you to see that?

You've found a great place to research and ask questions :)

Good luck with everything!

Ali

Hi Cacsy.. so sorry to hear of your troubles. I can totally relate and it is utterly miserable. I also tried resolor and it didn't do much for me either. Just a permanent headache! I was exactly the same.. couldn't eat, wore leggings/sweat pants. looked pregnant all the time, lived on prescription laxatives, couldn't sleep lying flat.. totally totally miserable and NO way to live your life.

I was diagnosed with colonic inertia after I had emergency surgery for a perforated colon (due to diverticulitis - all very weird). Anyway.. when they plumbed me back together after my ileostomy reversal nothing worked. I lived like that for 10 months, then (with the support of this amazing forum) decided to have surgery to have a permanent ileostomy and be done with it.

Your surgeon is right. The only treatment (if resolor hasn't worked) is to remove (or bypass) your colon. I can completley understand that you're scared.. but you also can't live like this forever.. and it's not going to get better. I remember saying to my surgeon that I would probably end up throwing myself under a train if he couldn't do something about it. Anyway.. you do have a few options though and it may be worth investigating.

I don't know where you live, and surgical practise varies, but it's worth doing some research, getting a second opinion etc. You want the best outcome in the end as well as curing the issue. For me that meant having a permanent ileostomy. There are many others on here who've had total colectomy (like your surgeon is suggesting) and just have small bowel attached to rectum. For some that works fine. If your rectum and pelvic floor are ok, you may well be ok with this.

Others have a J Pouch - which is similar, but instead of just attaching the rectum to the small bowel, they create a small 'pouch' out of your small bowel, which works like a resevoir and stores the stool for a while longer, giving you more control and better function. This is often done as a 2-3 step surgery and you'd have a temporary bag while things heal. It has complications, but again, there are many people on here who are doing brilliantly with it.

And finally, you could just go for an ileostomy bag.

I chose to go straight for the ileostomy bag. Mainly as I'd had one previously I knew I was ok with it and could cope. I am a runner and couldn't bear the thought of having 'urgency' issues and not being able to run or have to dive behind a hedge every 5 minutes. I'd also had 4 surgeries in a year, so the J pouch wasn't an option.. couldn't cope with more surgery. So ileo bag it was for me. I'm doing really well and it has completely cured the problem!

I hope this hasn't confused you further, and I'm sure others will be along soon to share their amazing support and advice.

This is the place to ask all your questions and seek support. We know what you're going through.

Alibee - good luck on Tuesday! will be thinking of you. Sarah