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Crohn's Disease
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Posted 6/12/2018 2:35 PM (GMT 0)
Some of you may remember me. Had a terrible flare with GI bleed and my upper gi track was as inflamed as the colon. Took a three weeks hospital stay to get me stable enough to come home. So im on Remicade again and now all my hair is falling out , Im wondering if it's from the remicade or just being so under nurished .Anyone else loose all their hair. The severe joint pain is back i know this is a side effect of remicade because years ago when i was on it same thing happened with my joints. Auntkay
Posted 6/12/2018 3:04 PM (GMT 0)
AuntKay, so glad to see a post from you, seems like its been forever!! But, very sorry to read you are still having issues, jeesh. I would be willing to bet the hair loss is a result of the malnutrition. Malnutrition & infections are two big culprits for hair loss. In the CP forum, one of our members named SeaShell has written an excellent post on hair loss with a lot of detail. If you will use the search feature here & type in chronic pain forum hair loss you will find her post. She responded to a new member that was losing her hair because of a perforation of her bowel & the member was very undernourished so she had a double whammy hit her.

How long have you been back on Remicade & when did you stop? Drs are usually hesitate to retry it once someone has stopped it, this is why I am asking. Other than all of the health issues, how have you been?

Take care.
Posted 6/12/2018 4:09 PM (GMT 0)
Hi Straydog, thanks for taking the time to respond. Since being on the forum many things have happened.Had to take a disability retirement due to a back injury. I had to have back surgery in 2016 l5 fusion. A year later had to have sijoint fusion. Then a particial hystorectomy thats when my crohn's disease decided to rear it's ugly head. I had not been on remicade since 2006 ,But when we woke up this sleeping dragon . I became very dehydrated and had a gastric bleed that landed me in the hospital for three weeks 2/9/18.Not only was the colon inflamed so was my upper gi track wasn't even able to tolerate ice chips. The GI decided to put me back on remicade , The infusion given to me in the hospital was done incorrectly . The Remicade was hung and nobody ever checked on me till the bag was empty. I later that night thought i was having a heart attack blood pressure shot up extremly high and my chest felt like someone was squeezing it tight and it felt like someone was trying to put their fist thru my chest. they came in gave me something to bring the bp down and did an ekg then placed me on a heart moniter . One other night while there i woke up in a pool of blood . I really thought i may not get out of the hospital. Thought my crohn's or the lack of care there would be the death of me. As you see i'm a fighter and i'm still kicking . Only to come home and start losing all my hair witch has set me back emotionaly . My husband is still fighting liver disease he's trying to get listed for liver transplant. Auntkay
Posted 6/22/2018 7:00 PM (GMT 0)
auntkay - I don't come around any more except for the occasional peek in, but I saw your name today. Was excited to see you, but so sad to see why you had to come back.
Sorry you are getting joint pain from the meds. Are they willing to try one of the newer meds instead? And for the hair loss...are you taking any folic acid? I shed like a golden retriever, but when I take 500mcg a day it seems to make a big difference.
You always were strong for me (with a good dollop of humor!)...wishing you all the healing and strength I can send.
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