Today, a judge ruled that a patient had the right to choose to die because he didn’t want to live with a permanent stoma.
It is so sad that someone felt that this was the only option, and I must stress that we don’t know the specifics of his case. This is someone who is very ill and had made a written “advanced decision” saying he would not want to live with a permanent stoma.
During my degree and masters, I studied medical ethics a lot and I have always been pro choice and pro body autonomy. I strongly believe that we should have the choice over our medical care and whether we receive it or not.
And in this case, from what I’ve read, this is a man who had made a decision in sound mind when he had full capacity to make the decision.
However when you see your own illness shown this way, it brings up conflicting feelings. Because living with a stoma isn’t a death sentence. Living with a stoma doesn’t mean your life will be shortened or that your quality of life will be less. In a lot of circumstances, having a stoma gives people a better quality of life.
But I do get it. So often, stoma’s are portrayed as a last resort, as something you don’t want, something for old people. They smell, they’re unattractive. Getting your head around having one for the rest of your life when you’re so young – it’s a lot.
On top of that, you’re very ill and you just want the pain to stop. Imagining a life, with a stoma, where you can life a normal life seems so far away. But for many it’s possible. However, everyone is so focused on your physical health, often your mental health declines.
We need to change the narrative around stomas
This is the reason so many of us advocate and share our lives with stomas. To show the alternative. To show there is light at the other side.
For many stoma patients, they get their life back. I’m included in that. I’ve done things I never thought I could since having my stoma. You see life in such a different way and it gives your drive.
It’s not always easy, and health complications happen. But that doesn’t mean that there are so many positives.
Mental health support is necessary
So often, when you’re so focused on your physical health, mental health gets forgotten about.
Having an organ removed is a major surgery. At any age, it’s a lot to get your head around. And they aren’t easy surgeries. They’re long, you are on lots of medications, a lot of things change very quickly. And it’s scary.
More mental health support is needed, for all chronic illness patients, but especially when going through ostomy surgery.
I was lucky and ended up having CBT a month after my surgery. I can’t express just how needed it was. From being incredibly sick, to nearly dying, to having your body change in a massive way. Having someone to talk to and to help you process it is necessary.
Where to turn to for support
I wanted to end this post on a positive note. Because having a stoma isn’t doom and gloom for everyone and it is possible to lead a good life with one.
5 stoma positive instagram accounts to follow
Mental health support
If you’re struggling right now, don’t be afraid to talk to your IBD/Gastro team, stoma nurses or GP and they can put you in touch with your local mental health support.
There are also brilliant charities such as Mind who can help support you.
My permanent ileostomy saved my life. Though its not quite a year and I have had compilations I am still alive. I can paint as I am an artist, I can still walk my dog, i just have her carry my extra supply’s in her back pack as she is my service dog and she can go everywhere with me. I take frequent brakes at stores when out for a walk to empty my appliance, and I found a High out put ostomy appliance to reduce the number of times I have to get up at night. Thank you for your article as so many of have a hard time adjusting to the changes. I still don’t feel sexy, but my husband loves me anyway because I am here for him to love. I was only 46 when I subtotal colectomy that did not work. However with the support of other ostomits, my family, my medical team, and hospice, I have learned I am still me, and I can still achieve 90 % of what I use too. I just have to be Conscious of heavy lifting and were a support belt. If it were not for my ileostomy my large Colin would stoped working all together and I could have died within 3 months. So it makes it easer to come to terms with a major change in my life have saved my life.