Ok so the truth is I don’t always love it but most of the time I do. It’s a hard thing to believe, after all who in their right mind could love something that is essentially a bag of poo stuck to their belly? But for me, like a lot of other people it saved my life.
For some people, a stoma comes as a shock, it is the result of a freak accident, a sudden diagnosis of IBD or perhaps cancer. Sometimes (and not in all cases) the stoma is unwanted and incredibly difficult to come to terms with. But I consider myself lucky. My stoma ended years of suffering, illness, fatigue, hospital admissions, strong medications and embarrassing accidents to name a few. Nobody, no matter how sick, would wish or want to have a stoma, wearing a bag is the last chance saloon, something that perhaps you see as a possibility in the future but not something inevitable that will come at you in your prime. The truth is, we never really know what is round the corner or what fate awaits us.
This time 3 years ago, I was very sick, you wouldn’t know as I still worked full time in a stressful and full on job, had a social life and to the outside seemed normal. What people didn’t realize was that I was consumed with a mouth constantly full of ulcers, it hurt to eat even ice cream, I couldn’t even contemplate taking on the day unless I was stuffed with as many painkillers as I could take and just getting through the day would muster every ounce of strength I had. I would plaster a smile on my face, wear my high heels and then cry in secret when I took a painful bite of one of the only things I could bear to eat (banana),only for seconds to pass before an emergency dash to the toilet to expel what little was left inside me. I was constantly starving, I was so hungry I would cry and yet just the smallest morsel would send me into spasms of pain and hours on the toilet. But even then, the thought of a stoma terrified me, in fact I didn’t really know anything about the ‘bag’ (3 years ago there wasn’t the positive publicity we now see) I assumed it would be like a hospital drip where you had to carry it around with you on a pole on wheels!! So when I was told I would be receiving infliximab by the Gastro Doc I was over the moon. Infliximab is so strong and powerful with so many potential side effects that you have to have tests for TB, Hepatitis and a myriad of potential underlying diseases before it will be administered. I was told there would be an 80% chance of not needing surgery. So when days later I was told surgery was my only option I was distraught. How could I wear a bag, it would be awful.
However, by the time the surgeons came to see me I was in so much agony I distinctly remember saying to them “I don’t care just get the f***er out”! Eventually I awoke from Emergency surgery with two bags (one was a mucous fistula, more of that in later posts) but instantly felt better. I was in agony from the op but could tell that my ravaged, poisoned intestine had gone! It was days before I was allowed to eat properly again, which was torture but when I could it was absolute heaven!
So why do I love my stoma?
1) I can eat anything I want without fear of mad loo dashes, except sweetcorn, it’s the devil for me, I love it but it’s a small sacrifice (missing the large intestine means certain foods can be more difficult to digest and can cause issues but it’s all individual).
2) I can exercise again – ok not so much of a love as I don’t really like exercise but there’s no excuses and the sky’s limit if I want!
3) I can wear white and whatever else I like (yes with the aid of some amazing albeit expensive knickers!) but I can still wear those things. I mean who would wear white if the fear of sh*****g yourself was always at the back of your mind?!
4) I can have a relationship, yes you can date with a stoma, it doesn’t seem to put people off. But the best thing is no longer (as happened to me) having a date over for dinner, excusing yourself to use the loo only appearing half hour later, pale and weary! Emptying the bag takes seconds so no embarrassing ‘you’ve been a while’ moments.
5) I don’t have to find a nice toilet to poo in! Obviously nice toilets are a bonus, but it’s not like having a poo, where (especially us ladies) would rather do in private and comfort, but a practical task, that can be done almost anywhere. Oh, and no more waiting until I’m home to poo, nope it’s on the go now!
6) Travelling – I can travel, on planes, trains and automobiles! No worries of being on a plane, feeling an urge to go and yet seeing a dreaded queue. As yet, I have not had to empty on a train toilet and I hope I don’t have to, but I still could, no fear about being stuck in a god-awful train toilet for ages and risk missing my stop! Before travelling I make sure I empty, eat light before hand, take a couple of Imodium and away I go!
7) I am free of medication, fatigue and pain which is just amazing. Ok, so occasionally I don’t chew properly or I eat something that’s difficult to digest and I may get a ‘blockage’ which is painful but manageable yet it’s still better than before.
There are several more reasons but I realize I’ve chatted enough so maybe I’ll leave you wanting more! 😉
But as I said, I am lucky, suffering for so long made me appreciate my stoma. But if anyone is facing a similar situation, it isn’t all bad and you can have fun with it (yep you can, but more on that later!)
So I love my stoma, really for the freedom it gave me and the fact I can now enjoy life – which is really the important thing 🙂
Your story is so refreshing! The reasons why you love your stoma are all things I am struggling to do now: eat, exercise, and wearing white is a no-no! It’s very helpful to read this! Thank you! 🙂
Thank you and I hope it helps you 🙂