Happy Stoma Aware Day!
I’ve had my stoma for 7.5 years, having had the surgery due to Crohn’s Disease. I have an ileostomy, meaning my stoma is formed from my small bowel. In 2021, my stoma was made permanent when I had what remained of my large bowel removed.
A few years ago, it was national news when a man took his doctor to court, wanting to be allowed to die rather than have stoma surgery. I am sure you can imagine the problematic feelings this triggered for me and other ostomates. While I believe everyone should be allowed autonomy regarding their body and health, I knew that my stoma had improved my life. Living with a stoma is not all sunshine and roses. However, it has been infinitely better than life was prior, and I thought I would share a few reasons why!
I’m alive! Many ostomates would not have lived had it not been for the surgery, and this is the case for me. A large section of my small and large bowel was almost completely closed up due to inflammation and scarring. My weight had dropped dangerously low. The surgery was risky but an emergency and better than the alternative.
Crohn’s can affect you anywhere from your mouth to your anus. Since the surgery, no flares have involved my digestive tract between my mouth and the stoma. My remaining large bowel, which following the surgery was unattached, continued to cause issues. This resulted in my 2021 panproctocolectomy surgery, which removed the remaining large bowel and made my stoma permanent. No Crohn’s flare-ups have made a massive difference to my life. I don’t experience the pain and symptoms associated with the disease. I am free to eat and drink what I want. When I was flaring, I struggled with consuming dairy, was often sick and could only eat small amounts of food. I would be unable to leave the house due to the constant bouts of diarrhoea, sometimes having to message friends last minute to pick up my children from school as I was stuck on the toilet. When I did go out, I needed to know where the bathrooms were and would never stray too far from them.
AccessAble Ambassador Natalie Gardner. Find out more about our Ambassadors here!
Following my stoma surgery, I am now a healthy weight again. As I have a stoma, I have less digestive tract to absorb fluids, nutrients, etc., so I take care of my diet, ensuring I stay hydrated and take extra vitamins, for example. I feel healthy after such a long period of poor health before the surgery, giving me many new opportunities. I started my blog and have been able to support, inform and inspire others through my work with AccessAble, for example. I had been doing my degree through the Open University but had to take a break when my Crohn’s disease flared. Since having my stoma, I have been able to finish this, gaining a first-class honours degree and completing my teacher training. I have been able to be a mum to my two wonderful boys again. They saw me go through so much and are the most empathetic, kind and amazing children. Now, I enjoy my time with them, making memories and going on adventures, which I couldn’t do before my surgery. I have also met a new man, and we randomly chatted about stomas! He had known someone with one, so when I told him about mine, it was great that he knew and understood what it was!
And that is why Stoma Aware Day is so important. While so many positives have come out of my surgery, people’s misconceptions can still leave you feeling very negative. I cannot tell you the number of times I have been tutted for using an accessible toilet. Aside from the fact that I have other health conditions that I need to use the disabled facilities, many ostomates use them. Emptying your bag while out and about is something you must get used to, and this is often easier in the privacy of a disabled bathroom. If we need to change our bag, we need the space and access to a sink, and we cannot do this in an ordinary cubicle. People with a stoma do not smell – the bag is sealed against the skin, meaning unless we are emptying it, you won’t smell a thing (and who doesn’t make a smell when they go to the bathroom for a number two?!). Just because someone ‘looks healthy’ doesn’t mean they are healthy and may have more going on than you think. We need to stop judging based on appearance. We also aren’t all old! I was 30 when I had my stoma surgery, and I know many younger people with one, including children.
People have stomas for many reasons, including IBD, cancer, EDS, accidents, etc. Having a stoma doesn’t mean you can’t do things. We can work, swim, go to the gym, parent, and wear a bikini. These types of things get much more manageable when more people are self-aware. There are fewer questions (no, my bag isn’t going to leak in the pool) and less staring, meaning ostomates can feel comfortable and confident getting on with their post-surgery lives – which, with their stoma, can be more impressive than you can ever imagine!