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:
- Wearing what I wanted
- Enjoying summer
Then, there was a stoma number two. Read more about this in "A Better Ostomy Experience."
What type of IBD have you been diagnosed with?