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Finally cut my long hair due to UC

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Ulcerative Colitis
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Posted 8/9/2011 8:35 PM (GMT 0)
Well, I finally gave up trying to save what was left of my long, beautiful hair. Before I got sick I had great hair and it was one of my favorite things about myself.
When I got my sickest and finally diagnosed I was put on Lialda. I thought it was that causing my hair to fall out but my GI still swears it is because I was so sick and lacked nutrition for so long. I am taking alot of supplements and there is new growth but yesterday I got tired of looking in the mirror and seeing my fragile, thin stringy hair and went to get a second opinion(lol). My hairdresser said she would cut all the length off and add alot of layers to appear thicker and grow out with my new sprigs. I let her do it after a bit of hyperventilating and it is a big improvement! I have always been a long hair person and I kept telling myself that if I cut it I was giving in to UC but when I would look in the mirror it was a constant reminder of this crappy disease and every strand that came out made me even more depressed, so it was killing me either way... It is crazy how this disease can make you think some crazy things, like cutting my hair was giving into it..
What is the expected for the hair loss? And regrowth? Has anyone had their hair stop falling out and grow back the same as it was before it fell out? I am so scared it won't ever be that way again...
Posted 8/9/2011 9:47 PM (GMT 0)
Hi, I lost a ton of hair when I first started taking UC meds. I am not sure if it was the meds (though it seems to be a common side effect) or if it was because I was sick. I wasn't eating right and I was extremely anemic. Regardless, my hair has grown back and I have too much again. I am not complaining because for a while, I felt like I would be bald and I was more scared of that than this ridiculous mane I am currently fighting in the heat. I don't think it's giving in to cut your hair, we go through phases in life and sometimes it looks better shorter and other times longer. I got a bad hair cut when I was a kid and I swore to never cut my hair short again that day. I guess I should face the reality that some day I may decide to cut it. I am sure you look great and it will regrow, don't stress. Have you tried biotin supplements?
Posted 8/9/2011 10:00 PM (GMT 0)
Thanks! And yes I am taking them now and I see new sprigs but so much fell out that it looked awful. And I feel the same way, everyday I was my hair and even a single strand makes me want to pull the rest of it out it is so frustrating. I know it takes time for the new hair to grow out but I worry I did some kind of perm damage by getting so sick. I was anemic also but was taking 1500 mgs of iron for over 3 months before I got really sick. Which in my opinion caused my colitis to get so bad... but wasn't diagnosed yet so who knows.
I got a bad hair cut as well and went thru a phase where I trimmed my own hair until it got to the middle of my back again. lol
Posted 8/9/2011 10:26 PM (GMT 0)
Hiya the first time I was in hospital years ago my hair fell out a few months later, and it grew back but it took a couple of years to be the same as it was (thickness and length). I was in hosp last summer and it has fallen out again so is now very thin. I got told by the doctors that when you are very ill your body doesn't bother with your hair (or nails) as it is focusing on the ill part (colon) but you don't see the damage til later when the hair you were growing when ill is what hair you have.
Posted 8/9/2011 11:19 PM (GMT 0)
Hi! I just posted about my hair a few days ago. Some people also recommended zinc. I'm also at the point where I think I may need to cut my long hair because it is starting to look stringy.
Posted 8/10/2011 1:31 AM (GMT 0)
I had to go super short during my first and worst flare. The flare lasted so long my hair was falling out like crazy. It eventually grew back and is now back to normal. yeah
Posted 8/10/2011 2:41 AM (GMT 0)
LivingAgain,

I feel for ya!!! I too was mainly a long-hair girl myself...I found that after getting sick with IBD, over time I was noticing too much of my hair falling out (not even on meds and it was still lots coming out) so I finally opted for shorter (shoulder-length) also with layers. I have alot of hair, and it's in great condition and there's always new growth coming in (thankfully) but even at shoulder-length with layers I still get tons of it wrapped around my fingers in the shower...I won't dare let it go down the drain or it will clog for sure, so I collect it and then throw it in the garbage (don't want to clog the toilet either since I really need my toilets working LOL). I suppose my falling out hair might have a little more to do with me aging now as well (44 yrs old) and since I stopped plucking greys and am now just dying it) it's looking even more full and still super healthy thank goodness for the vitamins I supplement with because I'm sure that helps me tons.
Posted 8/10/2011 4:00 AM (GMT 0)
It seems from posts here that Lialda causes hair loss to a number of UCers on the forum. My worst loss came from steroid meds in my early yrs after diagnosis, though 5-ASAs I've taken do make it fall out moreso than it did before UC-- rats! (Antibiotics also does that to me, grrrrrr.) I also decided to grow my hair long after a bad haircut from a relative's beautician in my 20s. Saves time & $$$ to wash & wear as is. Good nutrition & gentle shampoo like Neutrogena will hopefully help to regrow your hair in the coming months. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 8/10/2011 4:30 AM (GMT 0)
I actually lost about half of my hair before I was diagnosed with UC, but after my hyperthyroidism started. My hair wasn't very long at the time, but I've always had really thick, somewhat "poofy" hair. Now that it's all starting to grow back, it's decided that it wants to be almost curly, rather than slightly wavy, and I'm finding that I really like that. So think if this as a positive experience-your hair will always grow back, and it may be different!
Posted 8/10/2011 1:14 PM (GMT 0)
Thanks to all your replies!! I know that some people said their hair grew back, but I wasn't sure if it would be the same or if it would like agt13girl's post, come back different.. I have fine hair, but had a decent amount of it so it did very well long and straight. These days with this heat and the humidity it seems more frizzy and ratty looking that it ever was before. Thats when I decided to cut it off. I am alittle fearful it won't come back as sleek as it was and I HATE friz!!! With my hair being fine, it is hard to find products that will not make it sticky or weight it down so taming this friz was impossible. It is shoulder length now and very choppy layers. I like it, but can't help but look at the pictures when I wasn't sick(that I knew of) and miss the long hair. It is so frustrating! My hair was almost a security blanket to me and now it is "sick" lol DANG THIS DISEASE! I feel for all of you that are having the same problem, for women hair is important and when you collect hands full a day in the shower it shatters you emotionally. ( I too collect it and throw it away or my drain would be done!) and true true on the toilet.. always keep that in good working condition LOL!!!
Posted 8/10/2011 1:41 PM (GMT 0)
All my life, I have had super thick poker straight hair. It was down to my waist when I decided to cut it - not because it was thinning but because it was so thick and heavy it was causing me neck pain. When I had it cut, it was about the same time I started on 6mp. I lost a ton of hair when I started on 6mp, so it was shorter and thinner (not super thin) and I actually enjoyed the thinner hair after having is so thick for so long. But then my body got used to the med and my hair came back. But this time it was different. Instead of being poker straight, it came back curly/wavish. So now I have both straight hair and curly/wavy hair. It's a pain and a joy at the same time! lol

But I agree that women rely on their hair and I understand how devastating it can be to lose it. But I want to make one suggestion - I see you're only on 1000mcg's of Biotin? You might have better results if you switch to 5000mcg's or 5mg's. I tried the 1mg(1000mcg's) for my nails, which were getting deep horizontal ridges and it did nothing for me. So when I switched to 5mgs, the ridges smoothed out and my hair started looking healthier too.
Posted 8/10/2011 2:16 PM (GMT 0)
Lialda made my hair fall out! and I switched to sulfasalzine and haven't had any problems.
Posted 8/10/2011 3:12 PM (GMT 0)
Thanks Red for the suggestion.. I will try that and see what happens. And I have had this conversation with my GI doctor 4 times now, he switched me to asacol to show me it wasn't the medication. I suggested the sulfasalzines but he frowned on changing from the mesa's. I guess his point was it is helping make improvement so even if it sheds a few strands extra I am at least "well". Not that he is inconsiderate, but he is not a hair doctor, he is a gastro doc and so he treats the UC. He said I can't really be sure about which made my hair so thin since I was deathly ill when I got diagnosed. He said he wouldn't talk to me anymore about the sulfa's for 6 full months of a "healthier" me and see if it was nutritional.
Asacol didn't really do as well as Lialda so I switched back. I guess I see his point in the better to be "well" than stuck on the pot with pretty hair. LOL
Posted 8/10/2011 7:07 PM (GMT 0)
It's a long process to lose hair and have it coming back again. Anything that interferes with any of the stages will have repercussions up to a point.

One does notice hairloss on longer hair than shorter hair, and fine hair edges, if not trimmed regularly, will always look tattered than full.

You also should be on rectal meds to deal with rectal inflammation and treat flares earlier...you might be able to get on a lower dosage of Lialda/Asacol that way.

BUT...in the meantime, you're taking B complex and other vitamins that will keep your supplement intake appropriate for stress and hairloss.

Hang tough...as long as you have little baby hairs coming in....you should be able to count back at least 6 months to a year where the exaggerated process of hairloss was already happening.

Nioxin regimens are available for you to consider. Match it up to your needs and hopefully that will encourage hairgrowth and hair integrity as it's growing.

Do make sure you wash your hair more often than not...

q
Posted 8/10/2011 11:52 PM (GMT 0)
i lost my hair twice from UC - meds, nutrition, i think both played a role. I have all my hair back now and its healthy and full. Hope you feel better soon. I took biotin.

Take care
Stacy
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