When I thought about the word “challenge”, I really had to think about what it means – it’s a word we hear and use often but put on the spot, it was hard for me to put into words. Eventually I decided that, for me, it is all about completing a task that’s out of your comfort zone and not letting it beat you. Having a stoma was just another thing to overcome – it wasn’t easy at times. Having to face a new physicality was one thing but often the emotional impact is an even bigger challenge. However, in this blog I have picked out some of the everyday challenges that I have faced and tried to think about what I did or that’s now routine, and therefore proving that in the biggest instance, prevention is better than cure.
- Physical comfort: After my operation, it was the discomfort relating to little things that struck me most – like sitting down after my Ken butt surgery, walking around, travelling in a car, and lying down in bed. I had taken these things for granted, as we all do, but now the trauma to my muscles, the different way my gut worked as well as being conscious of the bag in front of my body were all a bit overwhelming. In time I learned that its important to be proactive and so I bought a comfort cushion to use at home and in the car, I wore clothing that had elasticated or drawstring waists, and I made sure I walked and moved whenever I could even though it was gently. I found that it was only really possible to lie on my left side to experience comfort in bed. One thing I wish I had been told was to give my stoma site more support when coughing (I developed a cold just after I left hospital) and the strain of that, and the sneezing too, put a strain on my weakened stomach wall leaving me with a hernia.
- Engaging with a different toilet regime: Dealing with a new stoma was certainly a challenge, however i thing the trick is to be organised and establish a clear routine. This should reduce the risk of accidents and leaks plus it also gives you peace of mind during the day and also throughout the night. I make sure that my supply of products is always well stocked as for me the fear of running out is terrifying! I make sure that my bag is emptied regularly, especially when I am at work. This in itself isn’t always easy and I have had to arrange to have my shift rotas amended to facilitate the regular trips to the toilet that I need to have with my hidden disability. In addition, I have a locked cupboard where I am able to keep spare products and spare clothing if the worst should happen and I experience a leak in work.
- Having access to appropriate toilet facilities: As I said above, this is crucial and I don’t think people who have never experienced IBD really appreciate how stressful it is when you know you wont be able to reach a toilet within a few minutes of feeling those warning signs. This is an ongoing challenge for me, which is why I believe that raising awareness about the reality of the situation is so important. I have regular conversations with my employers regarding limitations to what I am able to do regarding driving routes where toilet stops can’t be accommodated and its not always easy to resolve this. Another thing I have also come to appreciate is how debilitating it can be when anxiety reaches a certain level. Recently I found myself worrying about this issue owing to rota changes; I got to the stage whereby I couldn’t cope with everyday situations because of it. I feel very strongly that mental health is just as important as physical health – it took a lot of courage to actually speak out about my anxiety but with the right support the situation was resolved.
- Coping with a hernia: I was fortunate to come across a really superb hernia support belt via Twitter about 10 years ago made by a company called The belts are basically a plastic loop with a webbing belt attached. The stoma bag is passed through the loop hole and the plastic frame sits behind it supporting my stoma site. These belts have been brilliant. I make sure I wear one every day and I only take it off at night. It is especially crucial when I am doing any physical exercise or DIY for example. It has given me so much confidence knowing that this clever, simple design is helping my hernia not to grow.
- Staying hydrated: Having an ileostomy means that good hydration is crucial. Having ended up in hospital as a relatively new ostomate because of dehydration, I now know I need to drink as much as possible throughout the day. Okay, so I carry far more bottles of water and/ or squash in my work bag than most people would, so my work bag is much bigger than the standard issue rucksack – but I’m not going to run that risk again. I am never without a bottle of water I dont go even he shortest distance without one. I might not drink much of it when I’m out but it’s reassurance at the end of the day.
In conclusion, I think that life will all ways throw up challenges and in order to address them its all about being organised, being prepared and being positive. We are human I know, and occasionally I have a good moan and feel down but it doesn’t usually last for long. I made a vow after my operation in 2012 that the dark days of illness were going to stay behind me and that I would look at every day as another opportunity to raise awareness and spread positivity. I heard a good quote recently from Albert Einstein that’s worth remembering and fits well with the topic of this blog and that is simply this:
“In the middle of every difficulty lies opportunity.”
