Yesterday a court ruled that a patient with serious bowel issues should be allowed to die because he didn’t want to live with a permanent stoma. According to his mother he ‘lost his spice’ with a stoma and worried about not ‘finding a woman’. I have to address that I don’t know the ins and outs of the story, the patient had made an advanced decision and in the end that decision was his own to make.
But, it was really hard to read. It really shocked and saddened me that a young man wants to die instead of live with something that I live with? It made me wonder was I in my own bubble and that a stoma actually was an awful thing? Is there such thing as being TOO positive?
(a stoma is the actual part of my small intestine that comes through my abdomen which leads into the bag. Mine is the size of a 20p coin, v cute)
There is no doubt that living with a stoma can have a profound effect on someone’s mental wellbeing and that more needs to be done to support patients who feel alone and that life is over if you have to live with a stoma. For me, I struggled to cope when I was sick but that all changed when I got a bag. Since then I have had a positive outlook on my life with a bag and I think a lot of it comes from acceptance. Hopefully by sharing my experiences I can give hope to those who feel negatively towards a bag as I once did too.
I didn’t have much time to accept I was going to have a bag, I was told in the morning and I was on the operating table within a few hours. I always knew of the possibility of surgery and spoke to stoma nurses and surgeons before this but I was just totally against it. It was always a last resort. I never pictured my life with a bag, I didn’t want to and until the last minute, I didn’t have to. I couldn’t imagine actually planning to have a life changing surgery, knowing the date and time and actually having to pack your own bag! To be honest I think that would be worse and I’m not sure what my mind-set would have been if it was like that for me.
People assume life ends when you get a bag. It is portrayed as a last resort when talking about managing your disease and is the only route left when medication doesn’t work. I felt like this too. I couldn’t imagine anything worse for myself at 20.
But I didn’t ‘lose my spice’ when I got a bag, I really hope you all think I’m hella spicy tbh.
Acceptance for me came pretty easy. I’m not even rose-tinting it. I was wheeled down to theatre in agony begging to use a bathroom while I was literally just about to be put under anaesthesia. The moment I woke up, the pain, discomfort and torment I felt for 3 years was no longer there. Don’t get me wrong I fought with all the staff in recovery to up my morphine the pain I was in was unimaginable but I didn’t feel the agony I had suffered all those years. And to me that was the beginning of acceptance- realising that this bag on my tummy has actually removed all the pain and given me my life back.
I missed out on a lot when I was sick, it feels as though I lost 3 years- nothing counts when you’re not enjoying it. My bag has given me the opportunity to do things I would never have done when I was sick and it has allowed me to live my life on my own terms. There is NOTHING I can’t do (bar fart) and I want people to know that it isn’t the WORST CASE SCENARIO because not living is.
I have been lucky though. I have never had a bag leak and I have never felt ugly because of my bag. But it isn’t easy. Wearing a bikini with people who don’t know me frightens the wits out of me. Popcorn, nuts and some veg often shut down my digestive system and I sometimes wish food went down the same way a normal person’s does. Wearing tight clothing when I’m out and my bag filling up is also mortifying at times and emptying in other peoples’ houses will probably always give me the fear.
My proudest reason for acceptance is the people around me. I feel comfortable with everybody I associate myself with and I am genuinely so grateful and really proud that everyone I know or know of has always been supportive and truly empathetic whilst also not thinking twice about what I’ve went through or how differently I poop lol. I have the best support system which allows me to be open, confident and the absolute weirdo I am.
Of course confidence, body image, physical ability and having decent partners can all play a part in affecting relationships and intimacy but that goes for everyone. Although I have never been in a relationship whilst having my bag (haven’t successfully made it out of the talking stage and hopefully I don’t for a while yet) I hope I have a good judge of character to know someone’s morals before pursuing anything and so hopefully my bag will never affect my relationships and has not affected intimacy trust me l o l. My mummy has always told me that if people don’t accept me for the way I am then it’s their loss. SO THERE. Get rid of anyone who doesn’t make you feel good.
At the same time acceptance isn’t easy for a lot of people. Having a stoma bag is life changing and can impact heavily on mental wellbeing and for most people it’s permanent. I can’t imagine the pain, difficulties and emotional exhaustion those face who haven’t come to terms with having a bag. Many people aren’t confident and don’t like people knowing about their bag and that’s okay too. But for acceptance there must be awareness and this is why so many amazing people talk openly about stoma bags.
As always, if anyone knows anyone who is struggling, who might face surgery or any of the sort please please please speak with me I am as open as a book as you can probably tell and it breaks my heart that others aren’t coping as good as I am and I just want to help L Otherwise, please use helplines available, be open and honest with your family/friends or speak to your GP to enrol on CBT which has helped many people come to terms with a bag.