Hair loss

[jec1126]

hair loss

Hi everyone, I am new to this forum, but I am so happy to have found you all! I have a question for everyone- has anyone experienced severe hair loss with Crohn's Disease? I was diagnosed almost 5 years ago, and my first severe flare-up left me with alopecia, which caused me to have to wear hair pieces and head bands... it took an entire year for the hair to begin growing back. I was okay for a couple of years and I just recently was hospitalized for my flare-up. The flare began in August and I am still being treated for it (currently tapering off prednisone, down to 20 mg/day and on 125 mg Imuran... was on 500mg flagyl and cipro). My hair is coming out in huge clumps again in the shower... any advice? special vitamins or treatments? I am a teacher and so I do not want to have to worry about hair loss, also I am getting married in June and want this under control!!! Please help!
-Jess:depressed:

 

[NatalieMT]

Although I think widespread hair loss is relatively uncommon with this disease there have been a number of topics created on the subject - so you're definitely not alone. I lost about 70% of my hair from around March to June of this year, it was very, very noticeable and I now have bonded hair extensions to add volume back. It's not an ideal solution, due to the expense but for now it solves the problem atleast. You might consider investing in some for your wedding, to make what hair you do have appear as though it has more volume.

I went to see a Trichologist personally when the problem started, basically someone who specialises in hair, and she said the problem was described as chronic telogen effluvium and for me it was a combination of low iron levels, low b12 levels, general poor nutrition and taking azathioprine (which I have now stopped). I was also asked to get blood tests to confirm nothing else was going on for example thyroid problems. I was on Pentasa at the time also but I was told the chances of that also adding to the effects were absolutely minimal. I will admit this now that I was too quick to blame all the medication when actually upon looking at the bigger picture it was a number of factors.

I now take various supplements to correct the above problems along with some vitamins especially targeted at skin, hair and nails. I am also applying something called Minoxidil 4% in the form of a topical solution to my scalp, twice a day which has been proven to stimulate the hair follicles and in turn speed up regrowth. It does work, it's no myth. I believe this is available over the counter under the trade name Rogaine but only in a lesser strength.

Luckily the shedding has now slowed down if not ceased. I do have a quite a lot of new growth coming through now, although obviously hair doesn't totally thicken out again overnight. I'm just grateful this isn't going to be a long term problem, I would think in these circumstances it rarely is, try not to worry. I'd suggest maybe you bring up the problem again with care provider and see if they have any suggestions as to any targeted solutions or things you could try that might help. Hope you manage to work things out, if you want to talk about this any further just let me know.

 

[Crohn's 35]

Hi there, I am a former hairdresser and one thing I know is medications cause the hair loss, when I read your thread I saw you were on Prednisone, I lost some of my hair too, but most has been replaced, just a old scar from a child didnt grow back, also I am not 20 either lol. All medications react differently to others and I am on B12 shots monthly, and wasnt taking my vitamins especially Calcium because I am prone to Kidney stones which is crohns related. I also agree the disease doesnt cause hair loss, it is the medications and unfortunately it cant be helped. Unless you try another medication. Lots of people on here to welcome and help you too. Lets hope that by June everything is ok, congrats on your upcoming wedding.
Welcome to the forum!

 

[jec1126]

Thank you so much guys.... I am just so frustrated with this, it's like can't it just be enough that I have to deal with the exhaustion, pain, and diarrhea? Now my hair has to fall out as well? After reading your posts, I am starting to think that this is the result of the Imuran (Azathioprine) and malnutrition from the flare that I had from August until recently. I am so happy I found this forum, it is so nice to talk to people in similar situations! Lots of times it's hard to explain how you're feeling to people who just don't understand.

 

[imisspopcorn]

Sorry Jess, especially with a wedding coming up. I lost a ton of hair last year after surgery for Crohn's. It is really scary and frustrating. My hairdresser recommended taking Biotin. My hair has come back now that I am healthy again, and it is really curly now??? For me, a lot of the loss was from malnutrition. It really sucks!!! I am glad you found this forum.

 

[CanadianBella]

Oh goodness Im feeling the exact same way (minus the up coming wedding). Currently I take an Omega 3-6-9 supplent, as well as a multivitamin with Biotin in it. Since I started the Omega I can feel a difference in my hair and skins health (not as dull and dry). But as far as growth back not much difference. I do have clip in extensions I wear sometimes. I have thought about permenant extensions too.

 

[violetcreams]

Mine falls out too. Sorry it's happening to you too. It's horrible.