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To reverse or not to reverse?

10/11/2022
chart ;

by Charlie Bremmell

After 9 years with my old faithful stoma, time is running out for me to decide finally on whether I opt for the ‘reversal’ (ileo-anal pouch) or the rectum removal. To be honest it has always been in the back of my mind, left there as long as possible, burying my head in the sand. The problem is, when you are well you just want to carry on living and enjoying life, not opting for yet more surgery. But here it is, time to face the music and decide.

I've read many articles and spoken to many patients who have undergone this kind of reversal. I would say it honestly seems to be half and half as to how well it has gone. Some have had awful complications and stories to tell and some have had a positive outcome and can't recommend it enough. One of my nail clients ended up in intensive care due to things going wrong after the reversal. So it's difficult for me to weigh up just how it is going to go as everybody is so different. Everyone's body heals differently and we all cope with situations differently. Without a crystal ball and psychic powers I'm lost.

Charlie catheter blog #3

But deep down I think I have always known the route I was going to go. I have researched the different procedures involved in creating an ileo-anal pouch and it can involve several operations. I am probably slightly different from most as I have had complications with my ileostomy. For the first five years it was very naughty. I was having constant blockages even on a liquid diet. Apparently my intestine was prone to twisting and kinking and no one could fathom why. So I had four operations to try and straighten things out. The winning solution in the end was to insert a catheter into my stoma to straighten it out when this happened. It rarely happens anymore, luckily, but if it does I don't panic anymore and just do what I have to do. I feel much more in control of things now and like I have a bit of power back over my health. I have wondered about whether I would still get these blockages if I had the reversal which I have read is possible. On balance I'm much more in favour of inserting the catheter into my stoma than my bottom.

Having a stoma can be slightly annoying at times, of course. The inappropriate noises it makes that you have no control over, the occasional crackly carrier bag sound, the inflated balloon you can wake up to, possibilities of leaks and odour going to the bathroom. But at the end of the day it's really not so bad. No one would ever know you have one. Boyfriends in the past have been so good about it and not put off at all, which I found very surprising. It doesn't stop me wearing anything I wouldn't normally wear and, more importantly, it saved my life. I think if I really hated it and it stripped me of my confidence then I would jump for the reversal. After four operations and lots of poking and prodding I'm happy to be left alone now. The stoma is not the end of the world, I am coping with it and will continue to cope with it. If I had the reversal and had complications or was left incontinent, that would be far worse for me.

So I'm sticking with my stoma, the thing that saved my life. I can totally understand how some must hate it, because I do get those days of course. I fully support anyone who goes for the ileo-anal pouch operation and I admire them greatly. They are strong and brave to go through another operation that will make their lives better for them. And for a lot of people I know it works and they are thrilled, which is fantastic. For me, I have become comfortable and don't want to risk further stress to my body and life. I will need that (hopefully final) operation to have the rectum removed to prevent anything sinister happening. I have had the active colitis in the rectum ongoing ever since the ileostomy and I have been a bit naughty ignoring this and, like I said, burying my head in the sand. So I am now in the process of being referred to get this removed. (Would be lovely if this was available by keyhole!) I won't get too excited there but here's to finding out and taking, I hope, my last step to getting rid of the colitis once and for all. Here's to me and my bag for life......x

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