My 21-year-old grandson was diagnosed with Familial Polyposis and had a colectomy with a temporary ileostomy 3 weeks ago. He lost half his blood over 4 days post-op and has had a temp 90% of the time. Last night, while in bed, he soaked the bed pad under him with pink-tinged, very rotted-smelling drainage. The smell was still horrible after washing it in bleach water. Is this normal?
carla
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Hi Carla, sorry to hear this for your young grandsons. I wish I could help in some way. I too have a temporary ileostomy. But I was 49, with no colon problems that I knew of. I had to go to the ER with severe back pain. Then, the doctor told me I had abscesses on my colon that needed to be taken care of first. Back pain was a kidney problem, on the back burner for now. So colon surgery #1, I woke up on a respirator, scary. Fine, then, poop everywhere. Healed for 4 months, then surgery again. He gave me the bag, yukkkkk! Learned to live with it. I'm so blessed to keep it on for a week at a time. I do have accidents at times, poop happens, lol! Lord knows I've cried a lot, but it's keeping me alive. My doctor left the group and turned it over to a different doctor. So I'm not ready for him to do surgery on me. Please keep the faith and I will be praying for you and your family! My hubby is from Oklahoma, Tahlequah, I've turned him into a Georgia peach, lol!
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I also have FAP and I am hoping your son can get excellent care and a team that really understands FAP.
I have a lot of organs gone now but at no point did I have a discharge --- get him to the doctor as he should not be losing blood or having any discharge either. Have they checked his stomach and duodenum for tumors?
You are welcome to send private messages or these open notes.....
There is a lot of wonderful research going on for FAP. I will ask my daughter for the sites she uses. My 21-year-old grandson has it too but is fine so far. It really tends to become a problem by 40 -----I was an exception and was in my 60s when it was discovered.
I so very much wish you folks the very best and pray he heals fast and well.