Monday was my first time at an ALLIANCE Annual Conference and I certainly enjoyed myself and found the day to be really interesting and useful.
There was one thing that stood out for me from the day. I attended the “What does it take to transform a service?” workshop. One of the services highlighted was about the Ins:PIRE project up at the GRI which is a support programme for the 5 week period after someone has been treated in Intensive Care. One the users of the programme who featured in the video shown has had an ileostomy formed after surgery and he was having difficulties getting the colostomy bags to stay on and their leaking was causing him to lose confidence about leaving his house. However, as a result of the Ins:PIRE project being there he was able to go back to the hospital and get the help he needed to sort things out.
This really resonated with me as after I has surgery to have a temporary ileostomy a couple of summers ago I had exactly the same problem with colostomy bags not sticking. I had been housebound as a result of my severe Ulcerative Colitis so I had gone for surgery to remove my colon and hopefully reduce the impact of the symptoms of UC and allow me to lead a “normal” life. However, when I started having problems with my colostomy bags leaking it really knocked my confidence and I became a near recluse again given that there had been times when the bags had leaked in public and I had a torrid time cleaning the mess up. Having been through one major surgery I was desperate to try to get out and about and enjoy the Scottish “summer” before I went back at the end of summer to get what was left of my insides reconnected so going back to being housebound was not what I’d expected.
At the time I didn’t know who to turn to: was it my GP, the IBD ward at the hospital that I’d had the surgery at, the stoma nurse or the colostomy bag suppliers? Eventually I was able to be put in contact with the stoma nurse at the local hospital, which was not the hospital I’d had the surgery at, but we were able to try various things to reduce the problem which worked to a certain extent but I was able to struggle through until the operation to reconnect me.
Had there been a service like the Ins:PIRE project in place at both the hospital and time that I was having the problems then I might have felt better able to raise the problem with someone and hopefully find a solution. Having been quite seriously ill and then had major surgery my confidence at the time was very low so I felt that I was being a hassle to the people that I was contacting to try to get help. The Ins:PIRE project was able to help the gentleman in the video shown at the workshop and I was glad to hear that such things were in place, albeit not yet yet rolled out across Scotland.