Chron's and EXTREME Hair loss

Over the past month I had noticed some hair coming out in my brush and in the drain. I really didn't think much of it. Though yesterday I woke up and my black duvet had blonde hair ALL over it. Still trying to keep positive I went in for my Remicade treatment at 10 am. And then to my horror at the dinner table I started pulling out globs of hair. It doesn't seem to stop. Even when I lay my head down to nap I wake up with hair all over me. My head now is getting small bald spots. This is driving me crazy because when I try to find reasons why there are 1000s: I am on 6mp, Asacal (9 a day), Remicade, Anxiety Meds. All of which my doctor said to get be a reason. Who all thinks I worry to much and that could be why. Needless to say I did not like that answer. He tried to confort me some and say he was loosing his hair. Though he is a 65 year old man. I am a 25 newly wed. SOme may call me vein to be crying of the clumps of hair. But it is like what else can this disease take from me. I have had to take a leave of absense from teaching because of several hospital stays, passed out from dehydration after a night of horrible bowel movements. Lost so much weight where I feel too weak to do sports and work out. I use to do one a day. The worst is I missed out on honeymoon because I was so weak from loosing massive amounts of weight.

WOW so sorry for the blab. I know other people have lived with worse and a lot longer. I look to you for strength. So thank you!


I guess I am looking in the mirror and trying to decide what to do. I have what was a chin length blonde bob cut with SEVERAL noticeable bald spots. I know I can get it to grow back evenutally but what until then.
I am almost to a point where I want to shave it off and start over. Maybe get a wig or something???

Has anybody else had hair loss to this degree? If so how did you cope, did you wear a hat, anybody bold enough to shave.

If you read this thanks so much. I really do appreciate any advice or words of encouragement. This is a great place.

Teacher3 -

I am so sorry. Many hugs. I went through chemo when I was 33 and lost most of my hair so I have a little bit of an idea how you feel.

Practical advice about your hair - cut it short, do the absolute minimum in the way of brushing, washing to try to keep as much as you can. If it looks truly awful, go bald and beautiful - or bald with wig. Whatever suits. If it's winter where you are I'd go for the wig or lots of hats and scarves.

I went back and read your previous posts. I was struck by the intense reaction/side effects you seem to be having to Remicade. Have you had more than one infusion? Are you being pre-medicated at all? Are you having any kind of reaction during the infusion?

It looks like Remicade is your newest medication right?

How long have you been on the other meds?

Do you mind if I ask how you came to be diagnosed with Crohn's? What your symptoms were and what tests were done?

Patricia

Teacher3- I also lost my hair when I was very sick. I was on all the usual medications at that time but I truely believe that my hair loss was caused by my severe anemia and susequent blood transfusions. What I did to hide the growing number of bald spots was to use hair clips and barrettes to pull the remaining hair over those spots and i always put what was left of my hair in a pony tail as this tends to hide those bald spots. Once I was in a solid remission, I started taking Biotin and Folic acid daily and my hair grew back thicker than ever. Best of luck to you!!

I know what you mean about how significant your hair is to how you feel about your self image. I have to admit I have kept my hair long enough to be in a ponytail to cover the bald spots. I spend about 150 dollars a month on my hair, because I am so very vain about it (I know shallow, but it is one of those things for me). I have found damage remedy by aveda to work best for me (they have little travel size bottles so you can just test it) if you have straw dry hair from crohns, and use satin pillowcases so my hair does not tangle as much. Plus biotin and folic acid suppliments helped work for me. Oh and a boar bristle hair brush.

I have shaved my head to make my helmet fit better back in the day, and it takes too long to grow it back out for me.  I have some scars on my head that my hair hides as well.  Plus wigs are itchy and my scalp is very tender right now. But I am thinking about getting some clip in pieces to see if that helps with covering the bald spots.

I like many have experienced some hair shedding. I am on Asacol and I think in my case that is the culprit. Adding in some extra Folic Acid might do the trick to slow it down some. Thats what I recently started hoping for some relief.

Just fyi even the normal head of hair sheds about 100 hairs a day.

For me, it's the asacol.  My hairstylist thought it was the prednisone, but I've been off that for more than a month and I'm not on anything but asacol at the moment and my hair just keeps on falling out.  It's really, really bad.  I'm taking biotin and folic acid as some of the others have recommended, but it doesn't seem to be helping.  I'm going to ask GI about an alternative to asacol - I just can't afford to lose much more hair!

My vote goes to the asacol, as well.  Seems my hair started falling out a month or 2 after starting asacol (on no other meds).  You might try switching to lialda, which is the same med but taken once a day - it just might help in the hair loss department?