10 things I wish I’d known before having my ileostomy reversal surgery

In the summer of last year I opted to have my ileostomy reversed.

I was to have it reversed in October, just a few months after making the decision – which wasn’t one that was made lightly.

I’d had my ileostomy formed in January 2015 after a battle with ulcerative colitis led me to having emergency surgery. I was told I would need reversal surgery that year, should I choose it, to ensure my rectum didn’t deteriorate beforehand.

I’d been having problems with my ileostomy – those mainly involving my skin. I was suffering with countless bag leaks that would leave my skin red raw. It was crushing my mental health and as someone who suffers with OCD (the real diagnosis not the ‘I like to everything in order’ fad), frequent bag changes and obsession over the cleanliness of my skin were ruling my life.

Of course, I knew the reversal was going to by no means be my saving grace – and was informed that my choice would ultimately leave me with the possibility of needing IVF to conceive, 70% chance of the UC returning in my rectum and a probable future surgery to remove my rectum. But I took the risk anyhow.

I just wish that I’d known a few more things about the reversal and about myself before taking that risk.

Here are 10 of them.

 

1. That recovery wasn’t going to be easy

I know the body is an amazing thing – but I certainly overestimated it. I recovered quickly after my ileostomy surgery but the reversal surgery was a whole other story. Hello weeks of accidents, living in the bathroom and having zero energy.

2. That I wasn’t going to be back on my feet in a matter of weeks

I was told by nurses at my hospital that I’d be back to work within a matter of weeks. It turns out that wasn’t the case. In fact, I ended up pushing myself too much by going back too early and ultimately, extending my recovery period. I’m a fool, I know.

3. How serious the surgery was actually going to be

When I was first due to go for surgery I had been informed that it’d be a quick, key-hole surgery. It ended up being a three hour surgery and I was re-opened down my scar. This meant a long, rocky recovery.

4. That it wouldn’t make me love myself any more

I didn’t really have any issue with my physical appearance when I had a bag. I’ve always had low self-esteem and have been very conscious of my weight for as long as I can remember. Before I had my bag, I was incredibly underweight due to unknowingly living with UC. As soon as I had my stoma formed, my weight rocketed as I became healthier again. Because I’d been at a low weight for such a long time I wasn’t sure how to deal with the extra bit of chub here and there and I again became insecure in my body because of it. But, I blamed my bag instead and told myself that once I had my reversal I’d feel better about my body. But honestly? I don’t.

5. That it wouldn’t mean a life free of pain

I never knew how bad cramps could be from holding on when you desperately need to use the toilet. They get so bad that my stomach physically starts to move as I feel gas travel back up my body. It’s horrendous and no amount of medication has managed to fix it. Alongside this I have dealt with lots of fissures, tears of the anus and bleeding from the back passage. Of course, these are all fixable – but it doesn’t make it any nicer to deal with.

6. That I would have to make some sacrifices

I have had to take a LOT of time off of work. This is due to having to commute and not being able to deal with the journeys or long days when I’m currently using the toilet between 6 and 10 times a day. It sucks when your life literally revolves around the toilet.

7. That it would affect my mental health

I had no idea how badly my reversal would affect my mental health. Having to take a lot of time off of work to work from home and practically be house-bound has been incredibly lonely and isolating and has led to me feeling completely hopeless and a bit of a joke to be honest. I watch as everyone else continues to live their life as I continue to wait for mine to begin again.

8. That there was further help for my issues

I have recently been referred to have biofeedback therapy – a year after having my reversal. I’ve had so many issues with my reversal including fissures and having to have botox inserted into my rectum alongside other problems with having a frequent urge to use the toilet and the possibility that my rectum has been stretched to a size larger than normal. I’ve also been told my bowel has simply forgotten how to do its job. So, I’ve finally been referred for this therapy, which is supposed to train my ‘re-educate’ my bowels. It’s going to take some time and many sessions, but hopefully it’ll be worth it and I’ll get my life back. I just wish I’d known about the therapy sooner.

9. That my body wouldn’t forget my ileostomy

It sounds strange, but today while attending my biofeedback therapy I found out that my body hadn’t forgotten my ileostomy. Confusing, I know. I’ve been getting a sensation there for quite some time and when I am not near a toilet and desperately need to use one, I cramp exactly underneath my stoma scar. While I worried this meant something bad – my physio therapist told me that this was my body responding to where my stoma once was. Who knew?

10. That it wasn’t going to be the end of an era

I assumed my reversal surgery was going to be an ‘end to an era’. But it wasn’t. I still talk about and write about having an ileostomy all the time. I met some great people who supported me all the way through living with an ostomy and I still speak with them to this day. While my ileostomy is now gone, the memories and friendships I made while having it certainly haven’t.

Words by Hattie Gladwell

One thought

  1. Thank you, as someone facing the choice to have a jpouch or permanent ileostomy you have given a really honest look into the things I ponder!

    Like

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