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Crohns surgery stoma help!
- Thread starter Lintel
- Start date
It saved my life I've dealt with misdiagnosed crohns for over a decade since I was ten.When I was 22 I had toxic megacolon and after a 7 hour surgery I had a stoma and I hated life it was just too much of a change too fast plus before the surgery my surgeon assured me I wouldn't have one so when I woke up with one I was less than pleased and couldn't wait for it to be gone.After about 7 months and 2 more surgeries it was gone and replaced by a J-Pouch once I got the J-Pouch I was always sick always in the hospital and after a little over a year the J-Pouch burst and I had a stoma again.I was given 2 options:have a stoma or Die....I took the first option and Seeing my J-Pouch experience was so poor I didn't mind the stoma as much but I had zero life the 13 months I had the J-Pouch so I went into having a stoma this time more open minded having a stoma is about acceptance,trial & error and sticking to what works for you.I've had this stoma for over a decade but I learn new things all the time there's so many things I can't eat but that's different for everyone and I can't drink alcohol not that I'd be a big drinker but it's simply not an option for me but that might not be an issue for other people.When I first had surgery I got in the mindset that I have no control in what's gonna happen but if I wanted to live I'll take what ever I get.Where 22 year old me was miserable about having a stoma and hating life current me has long since accepted my stoma and while it's not ideal and it isn't without issues in complete truth it saved my life and it's not really a big deal cause most of my current health issues don't really involve it it just took awhile to get used to it.
I, too, was given the option Stoma or Die! This was after years of non-diagnosis and then more years of resisting the idea of a stoma, while struggling with Crohn's and numerous surgeries for blockages, twisted bowels, fistulas...and loss of weight, embarrassing accidents, crippling pain and all the other life enriching aspects of this disease!!
Because I had left too long, my proctocolectomy operation had to remove a large amount of diseased tissue and so it took quite a while to heal but it did heal very cleanly.
As Tubes says, a stoma is not ideal but, for me, way, way preferable to life without it. It can take a while to find the right equipment (I hate the word "appliance" for a stoma bag - it sounds though I have a refrigerator or at least an electric mixer hanging off my stomach!). You should be allocated a stoma nurse and she/he will help you what suits you best. The companies that supply ostomy bags and all associated paraphernalia are very good at sending you samples (see the 'sticky' at the beginning of the Stoma sub-forum). I have just changed to Coloplast Sensura Mio bags and am finding them very good.
And since I have had my stoma I have done so many things that I wouldn't have attempted beforehand. I have just returned from my third trip to Japan and have had no problems in the communal hot baths, where you have to be naked. I have snorkelled in the Galapagos, been to Machu Pichu and Lake Titicaca in Peru, spent four days fishing off the coast of Western Australia and lots more. I have had 'accidents' with my stoma bag leaking (one on the top of the Island of the Sun in Lake Titicaca) but the positives far outweigh the negatives
Please ask any questions at all. Everyone is here to help.
Because I had left too long, my proctocolectomy operation had to remove a large amount of diseased tissue and so it took quite a while to heal but it did heal very cleanly.
As Tubes says, a stoma is not ideal but, for me, way, way preferable to life without it. It can take a while to find the right equipment (I hate the word "appliance" for a stoma bag - it sounds though I have a refrigerator or at least an electric mixer hanging off my stomach!). You should be allocated a stoma nurse and she/he will help you what suits you best. The companies that supply ostomy bags and all associated paraphernalia are very good at sending you samples (see the 'sticky' at the beginning of the Stoma sub-forum). I have just changed to Coloplast Sensura Mio bags and am finding them very good.
And since I have had my stoma I have done so many things that I wouldn't have attempted beforehand. I have just returned from my third trip to Japan and have had no problems in the communal hot baths, where you have to be naked. I have snorkelled in the Galapagos, been to Machu Pichu and Lake Titicaca in Peru, spent four days fishing off the coast of Western Australia and lots more. I have had 'accidents' with my stoma bag leaking (one on the top of the Island of the Sun in Lake Titicaca) but the positives far outweigh the negatives
Please ask any questions at all. Everyone is here to help.