This is my second battle with Hirschsprung. The first case was when I was about 2 till age 5 and had a colostomy for 3 years. Then they did a reversal. I lost, at that time, 12 inches plus I gained all the scars. Then, 25 years later, they operated on me for scar tissue removal. Then, 8 years after that operation, I landed back in for another surgery. I had a hernia in the belly button. Now, I made 14 years after the scar removal, I got sick and now I have a colostomy and have lost another 18 inches plus went through 2 surgeries in the past year. I have only found a couple people with Hirschsprung's and you both got the baggy and no reversals mentioned in the near future.
I would like to hear your stories because I am arguing with the dumb azz that isn't paying attention to all the surgeries, how long it takes me to heal, and scar tissue. 2 hernias I have had plus the 3rd waiting to be fixed and the loss of more colon for guesswork and a maybe that a reversal might work or can fail and end up back where I am, being on the bag. Don't bother me, but him being a pompous ass and setting limits then not backing them up is a big bother because he will say one thing then tell a different thing on paper so that it says I can go to my "normal" lifestyle which is no way even close to what I used to do. Manual labor jobs that required heavy lifting, bending, stooping, twisting, pushing, being an ox hunting and/or dragging the animal out that I chased for miles of walking in the mountains. If you saw me walking down the street, you wouldn't think I have a problem till I pulled up my shirt. The limit he gave me was a 20lb weight limit due to all the hernias and lo and behold, that didn't stop the 3rd one. The more I walk around, the more I change. Stoma doesn't stay the same size. I can change up to 5 times in a day depending on the heat and what I do. If I don't do anything but sit on my buttocks, I will make it 12 to 24 hours before I change.
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Hollister
Are you a caregiver for a child with an ostomy? In the summer months, this can become more challenging, thanks to heat, humidity, water activities, and travel plans.
Learn more about caring for children with an ostomy on vacation.
Learn more about caring for children with an ostomy on vacation.