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elzb
Regular Member


Date Joined Aug 2014
Total Posts : 35
   Posted 8/11/2015 7:58 PM (GMT -6)   
For the past several months I have been losing quite a lot of hair. Not clumps but many hairs are coming out each time I brush. I thin spot on the crown of my head is getting worse.

My UC has been only somewhat under control for the past year with Asacol HD. The only time it has been completely under control is with 30-40 mg of prednisone daily, which I am very reluctant to start again because of weight gain and other side effects. I'm currently having about 4-8 BM's per day with a small amount of blood and mucus.

I read that Asacol can cause thinning hair as a rare side effect, but uncontrolled D probably isn't helping either. I have also been wondering if this is causing some vitamin deficiency. My diet is mostly vegetarian currently, with limited dairy.

Any tips to save my hairs and slow this thinning process? Its so frustrating as a 24 y.o. woman to be dealing with this! Thanks everyone!
Pancolitis diagnosed 2012
Asacol HD 4800 mg/day

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 8/11/2015 8:41 PM (GMT -6)   
I have the same issue.

Normally after a very severe flare I lose my hair for 3 months. It stops as quickly as it starts.

I've been in various stages of a flare for almost 2 yrs now. Hair falling out for 5 months. Luckily I have very thick hair, but you can see how thin it's become. Very disconcerting. Unsure if anything topical (shampoo ) would work. I'm just assuming this is another concomitant effect of UC:(
female, Canada

Monthly IVIG, pentasa, Entyvio
UC/Crohns? PG

Dikid
Veteran Member


Date Joined May 2015
Total Posts : 2233
   Posted 8/11/2015 9:34 PM (GMT -6)   
Going thru the same thing for several months I lost probably half of my hair and like you said it's dispersed throughout
I saw an excellent dermatologist today and he said
It could be one or a combination of several things
Stress
Low iron or hemoglobin - get tested for both ferritin and the hemoglobin
Low thyroid function- test for tsh
Low vitamin d- get tested for vitamin d3
The blood loss from UC contributes to this greatly as well as malabsorption with some.
I was deficient in d, ferritin and hemoglobin levels were too low
So he told me to take vitamin d, multivitamin, slow fe ( brand of iron supplement) and biotin.
He also told me to try rogaine for woman to see if that helps
Maybe some of this advice will be helpful for any of you who have lost tons of hair.
On a side note my GI who has been in practice for 30+ years said it happens to most of his patients with UC and it will get better
20 year old female
Diagnosed with severe uc on 4/27/15
Remicade 10 mg/kg
Imuran 50 mg
Multivitamin, biotin, calcium, and vitamin d
Low residue diet (transitioning to regular diet)

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 8/11/2015 10:09 PM (GMT -6)   
When I was first diagnosed with UC and losing lots of blood for months, about a third of my hair fell out. It was a nightmare. I actually started looking at wig magazines but that was so depressing. A doctor told me that when you're low in iron, your body will extract it from areas when it's not essential, like the root of the hair, to use it for more essential purposes. After I got my symptoms under control, first with prednisone and then remicade, eventually my hair started to grow back and within a few months it was thick again. Try to eat foods high in iron, esp. protein. I had used rogaine in the past and it worked pretty well but that was before I got UC (my hair thinned out while I was on plaquenil for RA). I don't think rogaine will work though if the problem is iron deficiency but that's just a guess. As Dikid mentioned vitamin D is very important too - make sure you get that tested. If you're low, get on a therapeutic dose to increase the level to a healthy number. Until all your hair grows back (and I'm sure it will!) a shorter haircut might make it less obvious - maybe with a few layers. I had long hair when it was falling out and I cut it, and it looked a little better (but still not very good). Good luck and try not to worry too much - I'm sure it will grow back.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use Bentyl, peppermint oil capsules and Gas-X which all help with various UC symptoms during a flare. VSL3 didn't work for me.

Cadillacwomen
Regular Member


Date Joined Jun 2015
Total Posts : 209
   Posted 8/12/2015 4:50 AM (GMT -6)   
I think it is a problem with nutrition as well. When I'm in a flare my hair gets thinner and my nails get really awful looking. Taking a multiple vitamin with minerals helps a little.
diagnosed April 2015 UC
MEDS for UC Lialda and Endacort 3mg
Florastor, B complex, vitamin D10,000 weekly and multi vitamin.

Other MEDS zocor, levothyroxin, estrogen replacement and allergy MEDS.flonase.

Worriedgirl3
Regular Member


Date Joined Jan 2011
Total Posts : 270
   Posted 8/12/2015 6:38 AM (GMT -6)   
I'm so sorry that you are going through this. I have now experienced hair loss twice within the last year. I have tried minoxidil foam, biotin, and the Elon hair product line. The first time, all of these things helped. The second time (which I'm currently going through), nothing helped. Eventually, it stops though. My current shed is slowing noticeably these past few days and started in early June.

I asked my GI about this the other day and he actually said that hair loss can bea sign of healing and going into remission as your hair starts to grow again and pushes the old non-growing hairs out.

I know how depressing this can be especially as a young woman. You may want to try the elon,minoxidil, biotin combo and see if it helps. Even if it doesn't though, it will stop on its own eventually and you will not go bald. You'll just thin all over. I'm amazed at how much hair we can lose without going bald.
Diagnosed with ulcerative proctitis in 2010-canasa
Many flares along the way
Hospitalized with major flare and diagnosed with UC in June 2014- taken off of canasa, put on pred (off now!), 4 lialda/day
Flared again (minor) in Feb 2015. Tried Cortifoam (no luck). Was put on Canasa (no luck), Anusol (nope)
Current meds: 4 lialda a day, 1 budesonide suppository nightly

elzb
Regular Member


Date Joined Aug 2014
Total Posts : 35
   Posted 8/12/2015 8:05 AM (GMT -6)   
Thanks so much for the replies everyone! Feels good to know I'm not the only one experiencing this. @Dikid I think I will request a blood test for vitamins and thyroid, especially with my vegetarian diet I may be low in iron. Great to know this process is temporary for most people!
Pancolitis diagnosed 2012
Asacol HD 4800 mg/day

TotesMagotes
Veteran Member


Date Joined Mar 2013
Total Posts : 733
   Posted 8/12/2015 8:26 AM (GMT -6)   
The prednisone can also play a role. My first flare I lost 1/2 my hair. I had the perfect storm...first flare, malnutrition, post partum, and prednisone. It finally stopped as fast as it started and then I looked like a chia pet as it all grew back in. Haha.

Knowing you're not alone is a huge support. Hugs.
Diagnosed 2012 after birth of first child, Left sided UC
Remicade / Lialda
Enemas & Suppositories (as needed), VSL#3 DS, prenatal vitamin, fiber
Tried: colazal, apriso, asacol, 6 mp

You gotta learn to dance in the rain

ElpisUnbreakable
Regular Member


Date Joined May 2015
Total Posts : 468
   Posted 8/12/2015 8:46 AM (GMT -6)   
I had my hair fall out very suddenly in clumps. I had very thick hair before a bad flare and now about 40% is gone. It is still coming out and I see a lot of breakage.

I think DiKid already hit all the major reasons. A blood test should definitely help so you can target the those problem area. I too am low in hemoglobin, ferritin, and iron. I actually think the ferritin is a major one to target. This is your iron "reserve" so when it gets low, yes your body starts to take it from elsewhere. Think of it as your first line of defense against anemia. I would be VERY careful taking iron or ferritin supplements. These are super irritating to the gut. The best sources are simply food. Do you like clams? They are super high in iron. I make a low fat clam chowder which literally gives me a sort of high after I eat it. There's liver too. ick. I can never stomach it. It irritates my stomach.

A few things that have helped me deal....

I love the Remi hair extensions. You can get them on ebay. They are real hair. Just don't wear them every day because they clip in at the root of hair which does put stress on the hair.

Dry shampoo at the root really makes your hair look thicker.

I also am a big fan of Phytolium 4. You can get in on Sephora.

Keratin helps to strengthen the hair. You can get any sort of keratin spray or cream at cvs.
Diagnosed with UC in 2013. Had 3 month remission period on Asacol before it stopped working. Prednisone has consistently caused flare to worsen.

Medications: Asacol HD 800mg, Pred, Uceris, Canasa, Remicade
Aloe Vera Enemas
Gluten Free low carb diet
Turmeric, VitD, Fish Oil, Grape Seed Extract, Adrenal Fatigue, L-Theanine, D-Mannose, Q-Zyme Ultra, Marshmellow Root,VSL #3
Hope. Lots of Hope

atwoodt
Regular Member


Date Joined Feb 2014
Total Posts : 213
   Posted 8/12/2015 9:08 AM (GMT -6)   
Yes, hair loss is very common; especially with/shortly after prednisone use. I noticed that my hair never really came back while I was on 6MP either, it was always much thinner than my pre-UC days despite multivitamins, thickening shampoos/conditioners, biotin supplements, etc.

kamakya
Regular Member


Date Joined Jan 2014
Total Posts : 422
   Posted 8/12/2015 9:12 AM (GMT -6)   
My daughter had same issue and her GI recommended biotin and that seemed to have helped her a lot.

Dikid
Veteran Member


Date Joined May 2015
Total Posts : 2233
   Posted 8/12/2015 10:19 AM (GMT -6)   
I see you are vegetarian. You might want to get tested for pernicious anemia as b12 is very hard to come by without consuming animal products.
My dermatologist recommended slow fe iron. My GIs np recommended something chewable as its less irritating to the gut. Do not take a huge amount at a time like elpis said you should try to get it from food. Eating it with vitamin c helps absorption.
Don't take it at the same time as calcium as they mess each other up. I give at least two hours in between.
20 year old female
Diagnosed with severe uc on 4/27/15
Remicade 10 mg/kg
Imuran 50 mg
Multivitamin, biotin, calcium, and vitamin d
Low residue diet (transitioning to regular diet)

ElpisUnbreakable
Regular Member


Date Joined May 2015
Total Posts : 468
   Posted 8/12/2015 10:38 AM (GMT -6)   
oh yes, that's just reminded me....There are foods that inhibit iron absorption.

Eggs are a big culprit. (boo...I love eggs)
coffee and black tea will also prevent iron absorption.

Foods that should not be consumed in that 2 hour window of your iron rich foods or supplements - calcium rich foods (already mentioned) walnuts, almonds, lentils, and worst of all.....cocoa.

beets have the perfect combo of vitamin C and iron. I never used to like them but I have found ways to prepare them that are not so bad.

I have found that when I get out of the anemic zone....by hair starts to come back.
Diagnosed with UC in 2013. Had 3 month remission period on Asacol before it stopped working. Prednisone has consistently caused flare to worsen.

Medications: Asacol HD 800mg, Pred, Uceris, Canasa, Remicade
Aloe Vera Enemas
Gluten Free low carb diet
Turmeric, VitD, Fish Oil, Grape Seed Extract, Adrenal Fatigue, L-Theanine, D-Mannose, Q-Zyme Ultra, Marshmellow Root,VSL #3
Hope. Lots of Hope

L Rachel
Regular Member


Date Joined Mar 2015
Total Posts : 204
   Posted 8/12/2015 11:09 AM (GMT -6)   
I experienced hair loss too, particularly during one terrible month on Lialda. I found that birth control pills help (me). Unless your medication works very well, it may be worth trying another mesalamine.

zengrrl
Veteran Member


Date Joined Jul 2014
Total Posts : 613
   Posted 8/12/2015 7:24 PM (GMT -6)   
Iron levels should be checked but don't supplement until then. High ferritin is indicative of inflammatory state.

I also lost 1/2 my hair, now in retrospect I understand due to low B12. If you are vegetarian or vegan (I was) you MUST supplement B12 methylcobalamin sublingual (under the tongue). Serum B12 levels are not accurate to determine intracellular B12. When you are vegan and have UC your absorption of B vitamins is even worse. If things are really bad force yourself to eat grass fed beef liver once a month. Alternatively pay $20 for a B-12 injection twice a month.

Find out if you have MTHFR genetic mutation by enrolling in the (free) IBD study at 23 and Me. If you are positive for MTHFR there is even more reasons for you to have IBD, and more reasons to be super low in B vitamins. Best of luck.

GloGirl504
Regular Member


Date Joined Feb 2015
Total Posts : 388
   Posted 8/13/2015 6:46 AM (GMT -6)   
I've definitely been experiencing this. Like you said, not clumps falling out but LOTS of strands at one time. It's getting so old having to constantly pull loose strands of my chest, arms, shirt, etc. When I wash it, I get this big "bracelet" of hair wrapped around my wrist. Then after I blowdry it, I have to get down on my hands and knees and collect all the hair off the bathroom floor. If I didn't do that, after about a week, I'm sure you wouldn't be able to see the floor anymore. I clog the bathtub drain every few days. I'm developing bald/super-thin spots, too. And I had very fine hair to begin with. It's depressing for sure.
Female, 27
Dx'd w/pancolitis 1/13/15
Finally off Prednisone but will be starting Humira shortly
1 Ultimate Flora probiotic per day
1 Freeda Quintab multivitamin per day
50mg sertraline (Zoloft) per day
Tylenol Extra Strength as needed for cramps/headache

MNBeachgal
Veteran Member


Date Joined Jun 2008
Total Posts : 867
   Posted 8/24/2015 1:51 PM (GMT -6)   
I haven't posted in awhile, but I had to chime in on this one. After about 10 years on mesalamine-based meds (Asacol mostly) I lost about 1/3 of my hair. I had very thick hair though, so it mostly just made it 'normal' to thin in thickness. I switched to Colazal and it seemed to stop. I was in remission for those 10 years by the way, so a flare wasn't contributing to the hair loss.

Then about 3 years ago I went on Prednisone for a year and when I tapered off I lost 3/4 of my hair. Very devastating for a woman and really depressed me. I had to get 3 inches cut off my long hair and it still looked horrible. Had all the tests done (which I've had done SO many times in the past). Thyroid, iron, all vitamin levels were fine. Found out my DHEA was a little low (from an alternative medicine doctor - regular doctors would not test this for me). So I started taking 10mg of DHEA a day. Also my dermatologist finally suggested a laser hair comb, which actually really helped. It made my hair grow back much, much faster (and trust me it couldn't grow back fast enough for me!). It's not cheap though, I think it was over $300, but I was desperate to try anything. It definitely is the one thing that helped me the most and was worth it - 2 years later and I still use it 3 times a week. Still have hairs growing in everywhere, even though my hair is mostly back to normal now (although not as long as it was before, but getting there!).

It's horrible for any woman to go through this. Rogaine never did a thing for me - it's expensive and if you stop using it the new hairs just fall out (my dermatologist confirmed this). I hope you find something that helps out and I"m sorry you are going through this. It's hard for people to understand, they think 'it's just hair', but it is a big deal!
--------------------------------
UC - diagnosed 1994, in remission again
Meds: Colazal 3 pills/3x day, 1 mesalamine enema/day, VSL #3 DS 1 packet/day, Ultimate Flora 50 billion, iron, calcium, folic acid, L-lysine, Zyrtec, Yasmin, multi-vitamin, evening primrose oil, zinc
Tried Imuran but it affected my pancreas

Dizzy2002
Regular Member


Date Joined Mar 2011
Total Posts : 118
   Posted 2/8/2016 12:07 PM (GMT -6)   
Hiya, I have this problem too. Every time I have been in hospital, once I come out and start to recover, my hair falls out. Not completely, just much thinner all over.

I was in hospital in august and my hair has fallen out again. It is very frustrating as it usually takes about 2-3 years to grow back. Also annoying is that the doctors don't seem to care or even take it seriously.

I was told that the cause is that when you are very ill, your body doesn't bother with things like hair or nails, and sends the blood to your colon instead.

My GP had a rummage about on my scalp the other day, he said that it is starting to grow back, but I am so sick of this with it being the 3rd time!

I was recently diagnosed with a vitamin D deficiency, I am now having B12 injections every couple of months and colecalciferol pills once a week. The doctor said that this is very common in UC patients, as we don't absorb vitamins and minerals properly. Have also been on folic acid for a while (as I can't tolerate iron without antisickness pills and mine are not recommended for long term). I seem to mostly be anaemic even when not bleeding. Also have been on biotin for a while, hair did seem thicker at first but it did not prevent it falling out when I got ill.

Fed up so have been shopping online for last couple of hours, the things I picked out were:
1. 'FAST' shampoo and conditioner (ordered today)
2. Laser comb (ordered today)
3. Minoxidil hair treatment for women (ordered today)
4. Sea kelp pills (not sure on this one after reading reviews, as I get lots of nausea anyway)
5. Cod liver oil pills (not sure as it says contact your doctor first)

Am going to try the topical things first, am seeing GP soon so will ask about others. Good luck to everyone, hope all our hair grows back!

MNBeachgal
Veteran Member


Date Joined Jun 2008
Total Posts : 867
   Posted 2/8/2016 12:11 PM (GMT -6)   
The laser comb has helped me tremendously. Minoxidil does nothing other than grow tiny little fine hairs that never get long and just fall out when you stop the med. Plus it makes your scalp feel oily. I've tried many vitamins, diet change, shampoos - the comb is what has worked the best for me. It actually helped my hair grow back and calmed redness on my scalp. I've been using it for almost 3 years now. Definitely worth the money.
--------------------------------
UC - diagnosed 1994, in remission again
Meds: Colazal 3 pills/3x day, 1 mesalamine enema/day, VSL #3 DS 1 packet/day, Ultimate Flora 50 billion, iron, calcium, folic acid, L-lysine, Zyrtec, Yasmin, multi-vitamin, evening primrose oil, zinc
Tried Imuran but it affected my pancreas

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1919
   Posted 2/8/2016 5:22 PM (GMT -6)   
How awful for you. I bought some special shampoo online for my husband who was worried that his hair was thinning a lot and we have been quite impressed with the results, his hair looks thicker, and appears to be growing more, and so it has definitely worked. The product name is called Regenepure and I bought it from Amazon, it might help some.
Samantha, 45 yrs
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Pentasa 3.5g daily, Vit D, Multivitamin, Vit B12, 500mcg Molybdenum
Gluten, Dairy and Sulfite free.

noelhelp
Regular Member


Date Joined Jan 2016
Total Posts : 155
   Posted 2/9/2016 4:35 PM (GMT -6)   
This happens to me when I am flaring, my doctor told me to take Biotin, which I have started about a month ago. I already can notice less hair falling out. I take 10,000 MCG a day. I buy the Biotin with Keratin added to it which gives our hair even more nutrition. Eat healthy food, I believe that plays a huge role in everything UC related. I also take Vitamin D, 200 IU per day and Viactiv Calcium chews, 2 per day. I also believe Vitamin E will help with your hair growth. You can put Vitamin E oil directly on your scalp and it can help with growth. I wish you all the best.
noelhelp-UC since 1990

Current Meds: Lialda 1.2 MG 4 times/day, Anusol Suppositories 2 times/day, Mesamalamine Enemas 1/night for UC. Biotin-10,000 IU per day, Vitamin D-2000 IU per day, Viactiv Calcium Chews, plus D for Osteoporosis, Black Cohosh-540 mg 2 times per day for Menopausal Hot Flashes (Reduced hot flashes by 90%) Adavin .5mg anxiety,and valium, Fe 65 MG/day, EnteraGam 2 packets/day

ArkyM
New Member


Date Joined May 2016
Total Posts : 4
   Posted 9/29/2016 8:46 AM (GMT -6)   
I am currently going through this. Did you find that anything worked for you? I'm a 26 y/o female diagnosed with uc Oct 2015
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