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
Jul 24, 2016 7:23 am
Searchingforafriend
Jul 24, 2016 7:51 am
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ANWONDET
Jul 24, 2016 12:35 pm
Hi Carla, sorry to hear this for your young grandsons. I wish I could help in some way. I to have a temporary Ileostomy. But I was 49, with no colon problems that I knew of. I had to go to ER with severe back pain. Then, doc told me I had absesses on my colon that needed to be taken care of 1st. Back pain was kidney problem, on the back burner 4 now. So colon surgery #1, I woke up on respirator, scary. Fine, then, Poop every where. 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 4 a week at a time. I do have accidents at times, Poop happens, lol ! Lord knows I've cried alot, but it's keeping me alive. My doctor left group and turned it over to different Dr. So I'm not ready 4 him to do surgery on me. Plzz 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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Posted by: ejbetty
Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
Ewesful
Jul 27, 2016 1:12 am
I also have FAP and I am hoping your son can get excellent care and a team thata really inderstands FAP.
I have a lot of organs gone now but at no point did I have a discharge --- get him to the DR as he should not be losing blood or having any discharge either. Have they checked jis 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 yr 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 60's when it was discovered.
I so very mush wish you folks the very best and pray he heals fast and well.
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