My ostomy reversal isn’t all it’s cracked up to be – and I’m not sure if there’s a way ‘forward’

In October 2015 I underwent surgery to re-connect my small bowel to my rectum after Ulcerative Colitis murdered my large intestine.

I’d had an ileostomy bag for 10 months, and I felt ready to go under the knife once more to have my reversal.

I prepared myself to feel emotional once waking up – and sure enough I did, stirring from the anaesthetic to see a bare, bag-less stomach; skin flat underneath the bandages left from the operation.

I was excited. I didn’t mind having a bag physically – it didn’t bother me seeing it in the mirror and I sure as hell didn’t let it affect my sex life – but I was suffering from constant bag leaks, which would burn my skin and leave the area around and underneath the bag red raw.

I was excited to not have to get up extra early to change my bag and to make several attempts at cutting a secure fit to prevent those leaks.

I was excited to not have to wear support pants to keep the bag safely tucked into my skinny jeans.

I was excited to not have to use the disabled toilets anymore, and to avoid the stares that came from customers who didn’t know the meaning of ‘invisible illness’.

But boy, was I wrong.

A rocky road to recovery after the operation saw me unable to eat, bathe, walk or even go to the toilet on my own, which, of course, was something I really wasn’t at ease with.

I was dependent on nurses for 11 days – something my surgeon had not expected.

But on the 12th day, I seemed to get better. I was eating a little bit and I even found the energy to put on some makeup – a sure sign that things were looking up.

And they did. I left the hospital just a few days later – in the same heels I walked in with – and I returned home. I was well looked after by my partner, I gained back any weight lost (plus a few), and a few months later, I was back at work. I was moving forward.

Or so I thought.

You see, when you have a reversal, you have increased trips to the toilet – between 4 and 8 to be exact, despite being told ‘2-3’ (I wish).

Travelling seemed to be an issue. I couldn’t make it through my three hour long commute without being in horrendous amounts of pain with my stomach, needing to use the loo desperately but not having the facilities to do so.

“How on earth could a healthy looking young girl possible need to use anything other than the public toilets?”

And unfortunately, my reversal had raised other, painful issues – ones I won’t go into – which meant I needed to apply certain things in a sanitary area. Hello again disabled toilets.

I fear using the disabled toilets. There have been many a comment, many a stare – and once even a confrontation as to why I needed to use the disabled loo. How on earth could a healthy looking young girl possibly need to use anything other than the public toilets? Oh, how I ask myself that same question too.

But now, here I was again, facing the same rude remarks and the same eye rolls that came with having a bag. Except this time I felt guilty.

I’d had an operation to reverse my bag, and therefore if I was to lift my shirt to show them my stomach as if to say ‘Now say there’s nothing wrong’ – all they’d see is the scars where there once lay a valid argument.

Nonetheless, I use the toilets – but because of the guilt I feel I never use them for quite long enough, sometimes not at all. I guess you could call it ‘toilet fear’ – though it doesn’t seem to fit as nicely when it’s other people scaring you out of using one.

Unfortunately, regardless of who scared who, it’s resulted in me having issues with my reversal. I am constantly out of work due to being unable to travel, simply because my stomach will not let up no matter what I eat, if I eat, or how many Imodium’s I take throughout the day.

“It feels as though there’s never a silver lining”

And ‘holding it in’ is so dangerous for my reversal connection that I have been told if I do not start to train my body how to deal with the consequences of my reversal, I will have lifelong problems that will ultimately result in me having a bag again.

And as I said, I didn’t mind the bag – but it just feels as though there’s never a silver lining.

I am currently starting Bio Feedback therapy to train my body to work again. Something I never thought I’d have to do after believing the operation (despite the faults such as lower fertility rates and 70% chance of illness once more) was there to put me back together again.

Sure, nobody likes to discuss the toilet – but it’s the truth. The seriously shitty truth.

Here’s to hoping for that silver lining.

Words by Hattie Gladwell

One thought

  1. Hi Hattie, I have had my internal Jpouch for 5 years now with numerous follow up surgeries and still no happy ending. Like you, I fought so hard to get here, but the silver lining seems to have disappeared. I am now looking at going back or trying a second j pouch 😕. Thank you for sharing your story.

    Like

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