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Limitations with an Ostomy

I’ve had this stoma since October 2018, but this is not my first. In fact, I have had 3, and they’ve all been very different, and my limitations have been different too.

A bad experience with my first ostomy

So, let’s quickly flick back to my first stoma. A horrible thing, it was! My bag didn’t stick, constant leaks, burnt skin, etc. Looking back, I do believe that if the right support had been put in place, I would probably have managed much better, but it wasn’t, and so I didn’t…

It had been formed as an emergency in 2007, after being diagnosed with ulcerative colitis just one week earlier, and having only been unwell for 2 weeks. Before diagnosis, I had never heard of ulcerative colitis, and I’d never heard of an ostomy either. When I was told that I needed to have emergency surgery to remove my colon, which would mean having a stoma, I was initially relieved. I’d never been so ill in my life, and I just wanted to be well and free from the hospital!

Recovery and a stoma after surgery for UC

The recovery was long and slow, and looking at my stoma made me feel very sick. I had no idea how to dress with it, so my focus was just on hiding it – it wasn’t a good look! As my strength grew, I was incredibly proud of myself for getting over such a huge health issue, but I still hated the fact that I had this bag. The constant leaks and burnt skin were a nightmare, and I no longer wanted to leave the house. The summer months were the worst, and I constantly left work early because the heat made my skin under the base-plate itch, and as soon as I started poking it, it would cause a leak. I didn’t dare exercise for the same reason, as getting hot or sweaty meant I go itchy, and ultimately leaked. I never got a decent sleep either, because night time leaks were an issue, so I was up and down constantly, as soon as anything at all was in my bag. I didn’t feel like the me I should have been. I felt exhausted, unattractive, and extremely angry about the hand I’d been dealt. My stoma nurse had provided me with a couple of ideas to stop the leaks, but none of them worked.

Things I couldn’t do with an ostomy

The list of things I felt this stoma stopped me doing was huge. When you feel like you can’t even leave the house because the risk of you being covered in s**t in a public place is high, then you just stop leaving the house. I had no-one to talk to about it that understood, and the few things my stoma nurse suggested hadn’t worked, so there I was, pretty much housebound…

I’d been told which foods to avoid, so my number one pleasure, eating, had been taken away from me too. I no longer enjoyed preparing food, because I didn’t feel like I would be able to enjoy it, and peeling and de-seeding tomatoes etc, just felt like things I couldn’t be bothered to do.

In conclusion, stoma number one stopped me from:

  • Socializing
  • Wearing what I wanted
  • Enjoying summer
  • Sleeping
  • Exercising

Then, there was a stoma number two. Read more about this in “A Better Ostomy Experience.”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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