I’ve recently come across some negativity around stomas, mostly online, so I wanted to talk about how awesome my life is with one.
I think part of the “bad press” is that Facebook support groups almost have the opposite effect of our own Facebook pages. On our personal pages there is a tendency to only post when our lives are going great. On support pages we tend to only post when we’re struggling. To an outsider, unless they maybe read the comments, it must seem like life is all nonstop accidents and nightmares.
So I am here to dispel that view. My ileostomy didn’t just save my life, it gave me my life back! It was inevitable that I had a stoma, without it I would have died. I count myself lucky that I had the choice of elective surgery. The other option was to leave things until it was an emergency and completely out of my control.
It was a no-brainer for me…
Even though they were leaving my rectal stump for a possible re-section (because I was so ‘young’), I had already decided to stick with the ileostomy permanently. My Ulcerative Colitis (UC) meant I had lost the first 6 months of my son’s life to chronic illness and surgery. We’d even had to move in with my parents because I couldn’t look after myself, let alone a newborn baby.
As fate would have it, the UC returned to my rectal stump anyway so I had that whipped out less than a month after the total colectomy. I have never regretted my decision.
I live a normal life thanks to my stoma
I go on holidays, I go in the pool, I do yoga, I wear what I want and I dance at home in my pants.
Unless I tell someone I have a bag of poo stuck to my stomach they have no idea. One of the girls I’ve been working with for a while was shocked when I told her. “But you look and act so normal,” she said. Something I hear quite often!
If ever I needed a reminder that my life is so much better than before, it happened yesterday. I got food poisoning and the effects happened as I was driving home. My stomach was cramping like in the good old UC days and my body went into emergency mode, sufficient enough for my brain to try and engage my back passage, which is neither working, nor connected. I was caught in a vicious cycle of hot sweats and cramps then severe butt clenching. My brain was screaming “why won’t you pull over and relieve yourself in the bushes?!” Luckily, I wasn’t far from home and just needed 5 minutes to sit on the toilet and ‘phantom poop’ (yep, that’s a thing) for my brain to calm down enough to realise it could’ve just emptied into my bag without me feeling a thing.
I am so grateful I don’t have to experience those cramps daily, or the panicky sweats of worry about where the nearest toilet is. I don’t have to carry wet wipes in the car anymore for motorway journeys because there isn’t a services stop every ten minutes. I no longer have to experience the awful side effects of steroids that didn’t actually do their job.
Having a stoma is not the end of the world. Dying young because you didn’t have one? That is.