Graham’s story

Graham’s story

I have suffered from, let’s call it IBS to start with, for about 50 years. During this time, my symptoms were controlled very successfully by medication. I could go, sometimes, for years without a flare-up.

As the medical diagnoses and investigations progressed, so did my illness. Over the years, I went from IBS to Colitis to Ulcerative Colitis and finally I was diagnosed with Crohn’s about 10 years ago. This too was well controlled with new drugs that came on the market, although certain of the side effects of Crohn’s could not be controlled by the drugs – strictures and fistulae.

Things got so bad, I was operated on in March 2016, and I now have an ileostomy. At the time I experienced mixed feelings – ‘why me? How will I live with this?’

Once you speak with others on the ward in your situation, some ‘old hands’ newbies like yourself and, with all the support from the specialists, things aren’t so bad! Life goes on.

Never mind the disadvantages, what are the advantages? For me, I can eat anything I like again…until they reverse it that is! I’m making hay whilst the sun shines. My weight has stabilised, I look healthy and I’ve got my colour back. Alright, the pouch has to be stripped off and changed daily but like breakfast, lunch and dinner, this is all part of my routine now.

The most important thing I have learned along the way, is to try all the products on the market. Samples are readily available, so go and find the products that suit you the best, as you don’t have to stick with the ones used in hospital. I must have tried every brand and use an array from five or six manufacturers because those are the ones that work for me.

I’ve also learned that if you have to strip and change your pouch daily, like I do, do it before a meal. I’ll say no more. Don’t try and do it all alone. My wife was trained by the stoma nurse to change and dress mine. It is an awkward one (the stoma, not the wife) and has twisted and needs two people to dress it. She can do it in about 20 minutes now, with no leaks for nearly a year. I did have one experience that was uncomfortable at the time but I laugh about now!

I use a 2 piece, high output click together pouch and flange, but I was sent a sample of a stick-on pouch and flange. The pouch looked OK as the combination was less bulky and was fairly easy to fit. Unfortunately, during the night, I think due to pressure build up, it blew off, all over the bed!

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