Hi i'm on here for a very close friend who is shy and has Crohns. I'm doing everything i can to be there for her and help i'm hoping being on here will help. She was diagnosed with Crohns last year was taking Imuran. She was in the hospital and almost died from weight loss and loss of appetite. Her hair loss started with the Imuran. She was on it for bout 5 months then onto Humira for the last 8 months. She's stopped because she's desperate to stop losing her hair. Her lashes and eyebrows as well. She is now taking Mezavant hoping the hair loss will eventually slow down and possibly stop. Even growimg back eventually. I hope no one minds that i'm on here for her she's a sweet girl and i need to do what i can to make her smile again. Can anyone help me help her?? Has anyone else experienced these symptoms???
Need to help a friend with Crohns...
- Thread starter Drake69
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Help Support Crohn's Disease Forum:
good on you for trying to help your friend....
it is a shame there isnt at least one reply?
I think more information is needed for people to try and help...and without sounding mean, hair loss and being worried about that is quite minor in relation to living a life of pain and bewilderment.
she should be more worried about gut loss, weight loss and potentially life-loss...rather than worrying about hair loss....
work out where the crohns is and how bad it is.
it might be near the mouth,
or near the anus
or both.
work out what she is fighting and then fight it with all your might.
hair loss and all....
it is a shame there isnt at least one reply?
I think more information is needed for people to try and help...and without sounding mean, hair loss and being worried about that is quite minor in relation to living a life of pain and bewilderment.
she should be more worried about gut loss, weight loss and potentially life-loss...rather than worrying about hair loss....
work out where the crohns is and how bad it is.
it might be near the mouth,
or near the anus
or both.
work out what she is fighting and then fight it with all your might.
hair loss and all....
Thank you so much for replying. She did experience tremendous weight loss later last year, down to 80 some pounds, was in the hospital and she came close to jus giving up and dying. I'm thankful she's such a strong girl and she's made a great recovery from all that she's back to near 120 pounds. She still experiences random gut pains and faint headed with nausee. Her doctor is getting her in for a colonoscopy since she stopped Humira and is now taking Mezavant. I hope all goes well with that. The hair loss has really struck a blow to her self-esteem. She's the most beautiful person i know inside and out but she doesn't think so anymore even putting a towel over the bathroom mirror. She said she'd be the happiest and strongest girl on the planet if jus the hair loss would eventually come to a stop. I wanna see her smile again. I'll ask her the questions in your reply. All this is so new to me i'm trying to understand as much as i can. And thanx again.
good on you drake.......putting the towel over the mirror is not uncommon....i did the same for over a year, i hated the sight of myself and that was (in hindsight) because i hated my body.....i hated my body because it was causing me pain.
Of course the hair loss will stop and her hair will grow back again, it was probably a short term reaction to one of the meds.
But how will she start to love her body again?
For me it started with realising i hated my body....
its all part of denial, anger, fear, acceptance.
she is currently angry about it, which is better than being in denial.
it becomes a power of the mind sort of experiment......she hates her hair falling out and she hates her guts causing her pain........i would ask her if she hates her eyes that see the wonderful flowers and see the people she loves? does she hate her eyes? I would ask her if she hates her ears that provide the soundtrack to life and remember, many people dont have eyes and ears that work.....does she hate her brain, which probably works really well....etc......try and get her to harness a feeling of gratitude.
gratitide that she is now 120 pounds and not 80....
gratitide she has a friend like you....
to stop focusing on the one thing that bother her, hair loss, and focus on the good things......learn to love her hair again, it is only love and all its relatives that will bring the hair growth back...
Of course the hair loss will stop and her hair will grow back again, it was probably a short term reaction to one of the meds.
But how will she start to love her body again?
For me it started with realising i hated my body....
its all part of denial, anger, fear, acceptance.
she is currently angry about it, which is better than being in denial.
it becomes a power of the mind sort of experiment......she hates her hair falling out and she hates her guts causing her pain........i would ask her if she hates her eyes that see the wonderful flowers and see the people she loves? does she hate her eyes? I would ask her if she hates her ears that provide the soundtrack to life and remember, many people dont have eyes and ears that work.....does she hate her brain, which probably works really well....etc......try and get her to harness a feeling of gratitude.
gratitide that she is now 120 pounds and not 80....
gratitide she has a friend like you....
to stop focusing on the one thing that bother her, hair loss, and focus on the good things......learn to love her hair again, it is only love and all its relatives that will bring the hair growth back...
nogutsnoglory
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Drake you are a wonderful friend. The best thing you can do is just be by her side and support her and let her talk about it. It sounds like you are MORE than doing that.
If she is still very underweight she may need TPN which is tube feeding when you can't tolerate food but otherwise maybe take her out and push her to eat. She probably can benefit from nutritional shakes like Ensure.
Thanks for being a great friend to her during this tough time.
If she is still very underweight she may need TPN which is tube feeding when you can't tolerate food but otherwise maybe take her out and push her to eat. She probably can benefit from nutritional shakes like Ensure.
Thanks for being a great friend to her during this tough time.
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You are awesome!! A friend like you is hard to come by! For the hair loss, the best thing is to figure out what is causing it.. malnutrition, deficiencies, medications. She could also try Biotin supplements or hair care products. I haven't used them personally, but I know of many people that have been helped out tremendously by Biotin. Good luck! And tell your friend that she is amazing!
Thank you so much everyone. I jus wish she was on hete herself so you could all thank her instead of me for her being so strong. I wish each of you the very best with your own struggles and will stay on here to keep in touch with everyone and update on how my friend is doing...THANK YOU!!
PsychoJane
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EssieLuv made a good point. It's even more important to figure what is the cause of the hairloss. Sure the treatments can contribute to the hair loss but it is fairly uncommon side effect (I mean to cause massive hair loss).
The extreme weight loss, seconding the malnutrition related to crohn can cause an important stress. I can last a few months after the condition is back under control before it starts getting better too.
I guess she must have brought that problem to her GI already? I'm hoping they would have tried figuring out if she is highly deficient in certain nutriments and help supplementing her in these. Else, it might worth consulting a dermatologist to discuss the hair loss issue.
Hopefully for her this will resolve soon. I know how hardly hair can affect a women esteem as I've experienced some extreme side effects when I was younger. It feels a bit like vanity once you are out of the situation but when living it, it can be hard to manage along with everything else.
It's great she has you! I'm sure it helps her staying strong!
The extreme weight loss, seconding the malnutrition related to crohn can cause an important stress. I can last a few months after the condition is back under control before it starts getting better too.
I guess she must have brought that problem to her GI already? I'm hoping they would have tried figuring out if she is highly deficient in certain nutriments and help supplementing her in these. Else, it might worth consulting a dermatologist to discuss the hair loss issue.
Hopefully for her this will resolve soon. I know how hardly hair can affect a women esteem as I've experienced some extreme side effects when I was younger. It feels a bit like vanity once you are out of the situation but when living it, it can be hard to manage along with everything else.
It's great she has you! I'm sure it helps her staying strong!
Thank you! She has consulted her doctor about nutritional supplements to counter the hair loss. Such as iron, B vitamins, folic acid, etc. She is wondering about a recomended daily dose of Biotin and how much is needed daily...i took a screenshot of these replies and sent them to her she cried! She is very very thankful to all of you and so am i...
you should pat yourself on the back drake.....what someone needs is a loving friend like you...almost makes me want to cry!
Keep being there for her and helping her back to her happy place...one step at a time.
Keep being there for her and helping her back to her happy place...one step at a time.
I'm doing my best! And i realize that it is one step at a time i tell her often that time can heal all if you let it. She's so strong and all of you seem so strong yourselves it amazes me my heart goes out to each of you. She has days where she feels like giving up and i tell her that those are the days that she's lifted and carried. I got her today to read "Footsteps in the Sand" by Mary Stevenson. If any of you haven't heard of it its a great poem...
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