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Posted 10/29/2009 2:21 AM (GMT 0)
It's been awhile since I've posted on here.  The end of June I ex. my first flare that required hospitalization with the close escape of surgery.  I was placed on prednisone and tapered off by mid Sept.  I am feeling good. Although not symptom free as when I was on the prednisone.

This is the new thing:  I am losing my hair with rapid and large amount of shedding.  I take only Colazal.  The thing is, I really haven't been taking it much.  I was supposed to take it the whole time I was on prednisone and didn't.  I have taken it very sporadically.  It nags at me in the back of my mind.  My primary doc checked my thryroid and it was normal.  She says it is stress.  Which I have had alot of personal stress, very bad, but things are better the last few weeks.  

I go to my GI doc next wk.  He said it could be the Colazal.  I changed my diet.  I started the SCD diet.  I occassionally cheat, but rare.  I never eat bread, wheat, rice, any grains except I have had popcorn a few times. not that that is a grain...

Wondering if it is my diet?  I've lost 20 lbs.  (i needed to).  I exercise everyday.  I know I don't eat too much or enough most days.  I eat alot of banannas and almonds and that chicken soup and salads with fish or chicken.

Could it be my med if I haven't been taking it too much?  I mean I have taken it prob for 2 weeks.. and then every 3 days or so...

or could it be from my flare and being on Prednisone??

I hate this.....amazing all the hair I've lost.  I have very thick hair, but have lost about 45%.

Anyone else had this??

Posted 10/29/2009 2:52 AM (GMT 0)
How is your folic acid? The B vits?
I went from having a ponytail the diameter of a quarter to a half dollar, to now having ponytail the diameter of a dime. Stress and vitimen def did it for me.
Posted 10/29/2009 3:56 AM (GMT 0)
I lost about 50% of my hair volume after I weaned off a 5 month stint on prednisone. The hair loss went on for about 3 months. Then thankfully it grew back. Both my primary doctor and GI said it was from the prednisone.

I also agree with MMMNavy. Have them test your folic acid and B12. When I started out on Imuran I started losing hair again. Turns out that Imuran is a folic acid antagonist. With my already borderline low folic acid, the Imuran pushed my folic acid way below normal. When I got my level back up, my hair stopped falling out.

Also, if you have a regular cosmetologist or beautician, ask her/him for their thoughts. Most that have been in the business for a while have seen the effect medications have on hair. My beautician knew immediately that my first go-round with hair loss was caused by the prednisone.
Posted 10/29/2009 4:49 AM (GMT 0)
I’ve also heard that Biotin is a good one to take regularly for hair loss. I am on imuran and remicade and had heard of the hair-loss issue, so I am taking biotin and folic acid as a preventative. I take double the dose listed on the bottle. Apparently you cannot overdose on biotin as any excess is excreted into your urine.
Posted 10/30/2009 2:15 AM (GMT 0)
Thanks for the responses. So ask for the doctor to check my Folic Acid and B 12 levels? Any other vita def. to check for?
Posted 10/30/2009 7:03 PM (GMT 0)
Biotin is fantastic for hair loss - and yes as per someone else's suggestion I got the recommendation from my hair stylist. As soon as I said I was experiencing hair loss, she asked if I was on any new meds. I took a special hair vitamin (basically biotin with other nutrients) made by Nioxin that I special ordered from the hair salon. It really really helped.
Posted 10/31/2009 12:06 AM (GMT 0)
My GI also suggested Zinc as reason for hair loss...it did seem to improve. But I can understand the emotional toll. I had extremely thick hair in which I couldn't fit most barettes or clips in my hair. Now I can see my scalp, and lost more than 60% of my hair. Glad I had thick hair to start or I'd be looking as bald as Jean Luc Picard (a/k/a Patrick Stewart). Not really a good look for a woman...
Posted 10/31/2009 4:58 AM (GMT 0)
Yes! I also am losing hair, this nutrition guy I know recommended I take fish oil and it seems to be helping some... I'm going for a shorter 'do on Tuesday to help with the volume, SO EXCITED!!! Sometimes this stuff makes me feel less like a woman so cant wait to be pampered for a bit lol! Thx for posting this question and thx to the others who answered, this place is so helpful
Posted 10/31/2009 3:55 PM (GMT 0)
I've lost half my hair in the past year. I have no idea if it's Remicade, Colazol, or something else. I'm not that stressed, my thyroids are normal, and my B12 was actually too high. Doctors have no answers for me.
Biotin hasn't helped at all in my case, and neither has Therapro shampoo (which is supposed to be for hair loss).
It's just depressing that I've lost half my hair by age 21.
Posted 11/1/2009 6:51 AM (GMT 0)
I was actually coming on here tonight about my hair lol. I lost it in huge clumps when I first got sick and realized the other day that it never really stopped. My whole apartment is covered in the hair I've lost =\ (I mean I clean...I just can't keep up with it lol)

I realized the other day that my hair has gotten really curly over the last couple of years and I wonder if it's because my hair constantly breaks and falls out. I thought about it after reading this story in class about a woman getting her hair pulled out and it growing back in curls. I HATE how curly and damaged it is. Thanks for the advice guys...I might start taking fish oil again and I'll definitely look into the Biotin and folic acid. It would be nice to feel like a cute girl again lol

Someone mentioned on here a long time ago that Pentasa makes your hair fall out. I don't know if that's true or not but I've been on it since I got sick so that might be part of my problem.

Hope everyone had a good Halloween :D
Posted 11/2/2009 5:20 PM (GMT 0)
Has anyone noticed that they're losing their eyelashes as well? Even if I wash my face or accidentally touch my eye, I lose eyelashes, which didn't happen so readily before.
And I totally have an inch or so on my scalp that has no hair.
Posted 11/11/2009 4:25 PM (GMT 0)
I haven't lost any eyelashes.. My GI doc rescheduled my appointment and now I have to reschedule....so I don't have an answer yet as I continue to shed. On another post I started, my husband is recovering from the flu.....so far I'm good.
When I get an answer on my hair loss I'll post.
Thanks all!
Posted 11/11/2009 8:00 PM (GMT 0)
dinkydee- You mentioned you are on the SCD. Corn is a grain. Is the diet working for you?
Posted 11/12/2009 12:16 AM (GMT 0)
I think it sometimes takes several months for hair to grow back after being very sick. Here is the link to the mayo clinic article on hair loss. I hope it helps: http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes
Posted 11/12/2009 1:08 AM (GMT 0)
I had this same problem too! I would lose so much hair in the shower it would literally clog the drain in the middle of the shower and I'd have to stop and clean it out. Nixoin really worked for me! My friend who had been on chemo treatments recommended it and it has been wonderful! They also have Nioxin vitamins to take along with washing your hair with the shampoo and conditioner.
Posted 11/12/2009 2:58 AM (GMT 0)
Thanks for the link gumby, alot of info and my appt has been rescheduled again, now I go in Monday.... I hope my GI doc is open to doing some labwork..

Kim, I am still doing the SCD diet, and right corn is a grain. It still is with popcorn. I am trying, lately have cheated a little. I have found that I do so much better on it. I realize you must not cheat. I have been on long road trips all day traveling and it is hard to do....I found little tuna in a can, bananas and some cheese helps to take along. I do so much better and thought I'd never be able to give up bread, rice and potatoes, but it's not too hard. The chocolate and popcorn during my movie time is what is tripping me up! I did great today, and feel mentally back on track....once I step off even a little I regret it...
Are you on it?
Posted 11/12/2009 1:37 PM (GMT 0)
how much biotin do you take to help with the hair loss??
Posted 11/12/2009 11:16 PM (GMT 0)
dinkydee- I've not been on the SCD, but a somewhat similar antifungal diet. Helped tremendously with my UC symptoms; all gone :) Continued better health to you!
Posted 11/13/2009 3:17 AM (GMT 0)
My daughter lost a lot of her hair too, after tapering off prednisone.  Thankfully she has very very thick hair and no one knew the difference, but I was getting really concerned when I would wash or brush her hair and see so much coming out. It was all over her back, stuck to her clothing all day. I did ask the GI Doc about this and if it was from the prednisone. He said maybe (when I googled I did find lots of sites talking about hair loss w/ this med) but he also said it was probably her body's reaction to being so sick for a while. The lack of nutrients caused it, he thought.  At any rate, it stopped after about a month or two.  Good tips on the Nixoin. I'm going to look into it myself.
Posted 11/13/2009 3:20 AM (GMT 0)
I think I'm losing some hair too :( I'm on pentasa and have noticed alot of hair coming out into my hands in the shower... Super horrifying for a 19 year old girl!
Posted 11/13/2009 3:34 AM (GMT 0)
I know!! Its so depressing!!!! Ive heard from others that the hair loss can last from 1-3 months and the it will eventually grow back. after 3 months, Im not sure Ill have any hair left. I have seriously thought about jsut shaving my head and dealing with it. Im so sick of my flimsy hair. It used to be so thick and wavy. I will pray for us :)
Posted 11/13/2009 2:00 PM (GMT 0)
Asacol makes me lose hair so I take a supplement I found at Target called Hair, Skin, Nails. I just checked the label, looks like it's mostly biotin. Unfortunately, I hate having any length of nail so I have to trim my nails every couple of days but at least I know it's working! I also started getting it cut into layers so it wouldn't be so heavy & found that helped.
Posted 11/13/2009 2:38 PM (GMT 0)
I've had 10-20 percent hair loss over the last few months, which I believe is from Humira. I've been taking biotin, selenium, and PABA, and have noticed less hair falling out in the shower or just through the course of the day.

Female, age 43
Crohns for 10 years, diagnosed with ulcerative colitis 10 years previous to that
Humira injection once a week
Posted 11/13/2009 4:06 PM (GMT 0)
I have thin strip--about 2 inches--on my scalp that has no hair. I want to cry every time a see it. It's getting harder and harder to cover. My doctors told me it was a reaction to being so sick last year, but I've been in remission since January and my hair has been falling out since last November! When is it going to stop?!?
Does anyone know of on-the-spot treatments for hair loss? I really want hair growth on that strip.
Posted 11/14/2009 3:08 AM (GMT 0)
I am very scared just like you. I feel like just shaving it off cause it's getting so thin you can see my scalp. I'm not sure of any on the spot treatments. Im just praying my hair will stop falling out soon!!!! Im taking so much stuff, Im not even sure what else to do anymore. Did you ever take Prednisone?
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