How to decide if stoma reversal surgery is the right option for you

Yesterday, to kick off the start to this new blog, I wrote about my experience with having had reversal surgery. Unfortunately, it wasn’t a very positive blog, but in order to introduce what will be one of the main subjects on this blog, I felt I needed to write it.

However, after reading, it seems many of you who live with stomas and are thinking of reversal surgery felt disheartened about making your decision, and for that I am sorry.

Just because I’ve had a bad experience, doesn’t mean it’ll be the same for everyone – and there’s still hope for me in terms of fixing it and allowing me to lead a ‘normal life’.

After receiving this sort of feedback, I thought it would be good to write a post on actually making the decision to have stoma reversal surgery, in hopes that people won’t continue to feel conflicted.

Firstly, I chose to undergo stoma reversal surgery for several reasons. I had been having problems with my stoma. My output was always very watery no matter what I ate meaning I’d have up to 10 bad leaks a day. I’d spend so much time fretting about whether or not my bag was ‘clean’, which resulted in bag change after bag change. I’d have to do this at home, in public toilets and while at work – the latter of which was very frustrating.

Because of the leaks, my skin was always red raw and often bleeding. One time the changes had irritated my stoma so much that it turned purple and I ended up in A&E. I’d use different products to try to look after the sore skin – with only the LBF barrier wipes working – but every other day the soreness would come back, which meant bag leaks were very painful.

Alongside this I found living with a stoma to be hard for mental health reasons. As someone who lives with OCD, my life was revolving around whether or not I was clean, convincing myself that even if the bag was stuck on properly, it wasn’t, and therefore needed changing. I couldn’t kick the worry of a leaked bag out of my head which caused me to become very anxious about it all of the time – especially when out and about and not near a toilet.

While the bag didn’t affect my confidence or my social life, these reasons alone were enough for me to warrant the idea of a stoma reversal. And the bottom line for me was, that if I didn’t do it, I’d need to think about making my stoma permanent to avoid the rectum deteriorating – and so for me there was no doubt about it, I was going to give the reversal a go.

Obviously, a stoma reversal is a huge decision as it can introduce so many lifestyle changes – especially some that you don’t have to deal with when you have a stoma. With a stoma, you’ve got the comfort of having a bag and knowing that if you can’t reach a toilet immediately at least you’ve got some time to find one. It’s not quite the same with a reversal, depending on how much you need to go during the day, it can often be very urgent, leaving you in pain or even at the point of having an accident.

But on the other hand, with the reversal you’re not spending time changing bags or worrying about taking different appliances with you when you’re not at home.

Again with a stoma, people are usually very healthy and gain weight back after being poorly, but with a reversal can come weight loss in the beginning due to your bowels re-adjusting to ‘normal toilet life’, and there may be a need for further medication to slow your bowels down so that you’re not visiting the toilet as much as at first you may need to.

The bottom line is, there are so many pros and cons to having a reversal, just like there are with a stoma bag. But it’s up to you to make the decision over what you’re going to do.

It’s always good to read up on other people’s experiences – though you need to remember that everyone is different and everyone has both good and bad experiences. It’s also important to remember that you’re less likely to find positive experiences when searching online – simply because nobody normally feels the need to write about it for the sake of it if all is going well.

However, a stoma reversal is a serious surgery that needs to be thought deeply about before any decisions are made. Not just the surgery itself, but you’ll need to prepare yourself for recovery and getting back on your feet, which depending on how quickly your body heals, can take time.

As with everything, there will always be good days and bad days – you’ve just got to decide whether you’re prepared for them.

Many people choose to stick with a stoma bag because they’ve been so poorly in the past that they’re so happy to have a new lease of life that they don’t want to change it, and that’s great.

Then there are people like me, who won’t want to miss out on the chance to go to the toilet ‘normally’ again if it’s offered.

For me, it really was down to a ‘What if’ decision.

I didn’t want to make a decision to have my stoma made permanent if there was the option not to, as I feared that in years to come, as I was so young at the time, it may’ve been a decision I’d have come to regret.

And I think that’s the most important deciding factor of all who are questioning reversal surgery – forget other people’s experiences and the possibilities of it not working out – and ask yourself, is not going for the reversal something you may come to question in years to come?

If the answer’s ‘yes’, forget about everyone else, and do what’s right for you.

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