what was it like adjusting to living with stoma?
one of the things that was a problem, and one of the reasons why i got into doing a bit of advocacy for other people who’ve gone through cancer treatment that includes ostomies is, in the run up to having my surgery, i had decided i’m gonna have to get myself in the best possible shape i can so i can cope with this. and one of my exercise passions is swimming.
so, i got home from the hospital and a homecare nurse and ostomy nurse came to my home to check things out. at that time, i didn’t have a clue as to how to change these things and it’s a lot more of a challenge than you think — there actually is not very good information on how to do it properly. so i asked this ostomy nurse when can i start swimming again, and she said, oh, you’ll never be able to swim again. i was a little bit crestfallen about that.
when i then went through a discovery of what exactly i could do, and frankly, i did it more from just going on blogs and websites from other passionate people who had ostomies, to learn from them what the truth was. and the thing is, there’s so much nuance to it. there’s different kinds of ostomy sizes, there’s different kinds of ostomy companies, there’s different adhesions, there’s different bags you use, there’s all sorts of nuances to how to do this. and i had to learn it, basically, on my own, even though i’m a medical professional who’s got lots of contacts and ties with the medical profession. i was really shocked at how poorly it was taught.
one thing i used to do before i got sick was a lot of volunteer work. i’ve been to a bunch of different countries around the world as a surgical volunteer, mostly doing things like cleft lips and burns and microsurgery and things. and i actually have been on a trip since my big issues — in 2018, i went on a trip to india. i had significant anxiety but when i got there i was able to do pretty much everything that i wanted to do. in some ways i was even better than i did because i had a different kind of level of compassion and insight into pain and suffering than i’d had before. and i am hoping now that covid is finally lifting then i’ll be able to do that kind of stuff again because it was important to me. so i really believe that you can cope with whatever, you just have to go through a systematic process of solving one problem at a time. and that’s sort of where i am now.