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Posted 8/8/2018 9:44 PM (GMT 0)
Hey Guys,

I am finally recovering from a flare up that lasted about 4 months! I have been shedding a lot of hair, and I also noticed around May that my hair was thinning out on top. This is really scary for me. Last year, after recovering from a flare up that lasted 3 months I started to lose a lot of hair. I was really worried because I was losing clumps of hair. I ended up going to the doctor and she basically told me that I was shedding so much because of the stress my body went through while I was sick. She told me it would eventually stop after 3-6 months. I was worried but I never really noticed my hair thinning on top. The shedding did stop after three months and my hair gradually returned to its normal thickness. Fast forward a year later, I am also recovering from a flare up but now I can actually notice my hair thinning on top. I am only 22 years old and this might not seem like a huge problem but it is for me. I feel extremely insecure and do not know what to do to make it stop. I've always had medium to thick hair and my hair has never really been an issue. Does anybody have any advice for me???

Thank you
Posted 8/8/2018 11:40 PM (GMT 0)
I think we've all dealt with this at one time or another. It's difficult to handle, but it does grow back. I think you just have to be patient and stay healthy, hopefully you don't flare up for a very long time, and you don't go through this again. What medications are you on for UC? I feel like when I started mesalamine I had crazy hair loss, but eventually it stopped, and grew back. It was probably the flare and not the drugs, but the timing all coincided, and it really seemed like it was the medication. Interestingly, future flare ups, I never lost hair like that first one.
Posted 8/9/2018 12:23 AM (GMT 0)
I am currently taking Apriso!! I have been using it ever since I got diagnosis in 2015, and I personally don't feel like the medication is causing my hair loss. When I first started taking it, I didn't notice an increase in shedding.
Posted 8/9/2018 1:22 AM (GMT 0)
Are you anemic? My hair is thinning (massive clumps come out every time I wash my hair) and my GP referred me to a dermatologist. The derm told me that the anemia is what is likely causing th hair thinning. He also told me to aim for a ferritin level of at least 50 and once I’ve been there for 6-9 months I’ll start to see regrowth apparently.

My thinning has been going on for years, prior to my diagnosis, so I’m confident mine is not a result of meds.

I’m sorry to hear you are dealing with this. I’m also relatively young (29) and its really frustrating to only be able to style my hairs a couple of ways in an attempt to minimize how noticeably it’s thinning on top/my crown. I’
Posted 8/9/2018 1:49 AM (GMT 0)
I do not think I'm anemic! I had blood work done in June and my doctor did not mention anything about me being anemic.. My vitamin D levels were extremely low, so he prescribed me a high dosage of vitamin d! I went on vacation and forgot to take the supplement. I just recently started taking it once I noticed my hair was thinning. I did some research and saw that vitamin d3 is connected to your hair health. I am just hoping that over time my hair will stop shedding and will grow back. If it starts getting worse, I think I'll just go to the doctor. I don't want to go to the dermatologist because I feel like she's going to tell me the same thing she told me a year ago. I guess I was just wondering if anyone went through this and their did in fact grow back.
Posted 8/9/2018 2:45 AM (GMT 0)
The process would have started a long while ago, and i can almost guarantee it's not the apriso.

Thinning on top, many times is hormonal....i suggest you get thyroid checked. B12 and D, zinc and iron are important.

Did you make any changes regarding diet?

Were or are you on the pill or have changes with periods?

One thing.....shedding means a new hair coming in is pushing a dormant hair out.

q
Posted 8/9/2018 2:53 AM (GMT 0)
about a month and a half ago, I started to notice large clumps of hair coming out when I would wring my hair after a shower, or comb it (I only use wide tooth combs, too). My GI sort of brushed it off, but this board and the internet confirmed that it is likely a result of the stress my body has experienced with the onset of my UC and the flare not being controlled by meds. I have super thick hair to the point every hair stylist I have ever had has commented on it, so it is not noticeable, but very alarming. I am working to make sure I am getting appropriate nutrition. I am also not washing my hair as often, so I don't have to brush my hair as often. I also am only using a wide tooth comb and doing it softly so as to not pull.

I am getting a new GI next week (a woman!) so I am hoping to bring this up with her as well. I will report back what she says.
Posted 8/9/2018 2:57 AM (GMT 0)
My colon flared up in April and it wasn't until recently that I started noticing that my hair was thinning out on top. In the beginning of June, my doctor ran multiple tests and I believe my B12 levels were fine. He was planning on changing my meds and putting me on biologics , however, my flare up cleared up late in July! I haven't seen my doctor since June because I have been traveling. I don't know if I should go ahead and speak to someone about my thinning hair. I'm just hoping that my hair will go back to normal like it did last year. The only difference is last year I was shedding more hair but there was no noticeable thinning on top. This year I'm shedding less but there's visible thinning on the top! I just don't get it

My periods are normal and I have never been on the pill!
Posted 8/9/2018 3:13 AM (GMT 0)
I just checked my ferritin levels from my blood exam from the first week of June. It says the standard rage is from 10-154 and I was at an 18. During the months of June till just now I was taking an iron supplement. I always take iron during a flare up and just stopped two weeks ago ever since my stool returned to normal!
Posted 8/9/2018 12:54 PM (GMT 0)
Hair loss is a frequent complaint of UC patients who are flaring. The flares are the likely cause. Hair loss is a delayed-reaction to the worst of a flare. We can be malnourished, have low blood iron (be anemic), have low vitamin B, B12, or D, and any of those things individually can cause hair loss. Hair regrowth is often a delayed reaction to a recovery from a UC flare. Give it time, the loss will slow, stop, and then regrow. Always look at the long-game, and not the short-game. And make sure you have the underlying problems reversed. We're much more prone to having anemia, low vitamins B, B12, or D than the general population (genetic variants more common with UC patients); not guaranteed by any means but just higher odds of having them. Eat a varied diet of healthy foods high in those things, and consider supplements if still needed.
Posted 8/9/2018 2:44 PM (GMT 0)
Hair loss accelerates for me when I increase my mesalamine dose (both oral and rectal) when I am trying to fight off a flare. It is a known but fairly rare side effect of mesalamine (probably 2 or 3 percent of people who use mesalamine) and it seems to be dose related. Flaring likely makes hair loss worse too for the reasons that iPoop mentioned.
Posted 8/9/2018 3:43 PM (GMT 0)
I went through this somewhat recently. Had a HORRIBLE flare in December 2017 which put me into the hospital for about two months. I went anemic, had blood transfusions, the whole 9 yards. Initially, I didn't lose any hair during the actual flare.

But once I was released and the flare began to calm down a little bit, my hair started falling out LIKE CRAZY! It kept getting worse and worse and I got so scared because I didn't know how much hair I was really going to end up losing. Even my co-workers were finding my hair on their clothes, and the entire inside of my car was blonde. It was insane.

But slowly, the hair loss halted and I began noticing a bunch of baby hairs at the top of my scalp (which can be annoying because they STICK UP and cannot be controlled).

My doctor explained to me that it's actually an odd phase that your hair can go through when your body goes through this type of stress. It's actually a sign of healing, as crappy as that sounds. But it'll get better. Grab some biotin gummies. That's what I did. And I believe it helped.

I'd say all in all I lost about 80% density. :/
Posted 8/9/2018 4:09 PM (GMT 0)
I greatly appreciate everyone's comments! They are making me feel better about this situation. I will try not to stress as much about. Hopefully with time the hair loss will come to a halt and I'll see regrowth soon.
Posted 8/9/2018 5:48 PM (GMT 0)
It takes a month or more for it to grow to the scalp, then another to even see them a quarter to half inch.....expect 3 -4 months for it to be noticeable.

q
Posted 8/10/2018 1:11 AM (GMT 0)
It is very likely that your recent flare is the cause of your hair loss. I wanted to mention though that I went through a very similar experience and was told the same as you, but for me it turned out to be Lupus. I may have been low on vitamin D as I wasn't taking any supplements for a long time.
Posted 8/11/2018 7:47 PM (GMT 0)
I understand hair loss frustrations!! I went through chemo a year ago for breast cancer. I cold capped to try and save my hair but still lost up to80%. If you are looking for ways to conceal thinned hair, I can not recommend anything other than Toppik. If you are in the US,you can buy at any Sally Beauty store. You should buy the applicator pump the first time and the powder. There are YouTube videos to help with the application techniques.

Until your hair rebounds from UC, I also recommend using as little hear styling on your hair. And less frequent washes in cool or room temp water (not hot). This is all the guidelines given to chemo patients who are cold capping as you really have to baby your hair.
Posted 8/28/2018 9:55 PM (GMT 0)
I'm at the tail end of a one year flare. I lost about 60 - 80% of my hair about 4 - 6 months into my flare and finally have regrowth. I invested in a hairpiece that added a lot of volume to my head of hair. I purchased it at a wig shop. It was about an 1 1/2" by 3" and had 4 clips that attached to what was left of my hair. The gal at the wig shop cut it to match my current hairstyle and also helped me pick a color that closely resembles my natural hair color. It really helped me have the confidence to be back at work and not feel as sickly and people could not locate the hairpiece on my head. Downside is I was limited to one hairstyle (trying to pull it back or wear it half up did not look as natural). I only just stopped wearing it this past weekend because I finally have enough regrowth to provide enough volume at the top of my head and enough confidence to leave my house without my hairpiece.
Posted 8/29/2018 12:03 AM (GMT 0)
I've had this and did a lot of research on it. The most common reason for temporary hair loss is high cortisol, either due to extreme stress or extreme pain or both. Also when we take steroids our cortisol level gets unnaturally high.

When my iron was totally replaced my hair darkened and thickened, but the bald areas did not regrow until I started taking DHEA and pregnenolone to supplement my ailing adrenals that were suppressed by years of steroid use. It's tricky though because too much DHEA and you could actually lose more hair. I take 25mg in the morning only. Some people take it twice a day. If you're under 40 you need to be careful.
Posted 8/29/2018 10:32 AM (GMT 0)
I know someone mentioned a hairpiece. I wear hair extensions. Salons/Hair supply stores have little pieces of real hair you can tape into your real hair to make it look fuller. There are also bands and clips of hair you can use as well. I lost of ton of hair last year and it hasn't been the same. People want to speculate what caused it but the main point is it's gone and the regrowth has not been anything like what I had before. The extensions are great because I can hot curl them, they are longer than my natural hair ever was and they look good. I'm sick enough as it is, the hair makes me feel better when I look in the mirror.
Posted 9/4/2018 12:21 PM (GMT 0)
I had a particularly bad experience with this following my first flare up and course of steroids. It happened quite suddenly and gradually thickened back up over a phase of 2-3 months. It happened again following my second flare (more mild) and steroid dose (lower dose) but was more mild. My doctor recommended taking folic acid supplements the second time around and, it may have just been coincidence, but it seemed to improve quite a bit. Best of luck! It is upsetting at first but does recover.
Posted 9/5/2018 5:42 PM (GMT 0)
Yes - I lost about 45%-50% (maybe more?) total density of my hair shortly after the worst flare of my life.

Google around about it. It's a very odd thing. The blood loss you experience from your flare can actually put your hair into a very strange dormant phase. Once you begin to heal, it begins falling out like crazy and you'll see weird little sprouts of new growth.

But genuinely, it's due to flaring. Don't worry. Grab some Biotin gummies from Amazon or what have you and drink lots of water. It'll come back soon and A LOT OF IT!
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