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Really Upset :(

Im so Sorry but i just need to have a moan about this ,my Friends and family are sick of hearing me talk about this problem , and i just really need to vent about it.So i've been losing my hair and not coping at all well with it :(
I went out on Friday after work with some of the girls for some drinks , and was left a little upset but the amount of hair i left everywhere (my plate , the table, My drink , the sink in the toilets) Got home feeling very low and proceded to take the scissors to my long hair and chop it into a bob ,the outcome : 1 Hubby seriously worried about my mental health and 1 seriously bad haircut. I really just want it too slow down now , im getting very weird about it , I check it in the mirror all the time , i count how many hairs fall out and even keep the piles of hair that have come out (until Matty shouts at me to throw them out) I cry all the time.I know its just hair and it shouldn't bother me this much but i really can't help it. At least with the moonface the GI said it would be gone after a few months of being off the steroids ,but with the hair loss he can't give me any idea if it's going to slow down, stop, Will it come back, Im 27 yrs old and a girl ! I need some hair ,I've spent so much money on nioxin treatments, biotin supplements with no avail. I feel so ugly. Why does this stupid disease keep doing this ??? I get under control with the symptoms then moonface.....arthritis.....Hair loss! Come on Crohns give me a break !!!
 
I am not a girl, I cannot begin to profess an understanding of how you feel. I am losing my hair, but thats not unusual for a guy. I can imagine the emotional strain this is putting on you, and therefore, also on your other problems as stress doesnt help people like us.

That being said, I find that reading these forums helps be in ways that I hadn't begun to comprehend before. When I read about the man in the UK who died from being misdiagnosed, I feel grateful that I have docs who actually listen. When I read about the person with the oozing abscesses and how it hurts to urinate, or shower, or even just to sit still, it helps me to put my pain in perspective. It doesnt diminish our own suffering, cause to each of us, our pain is the worst. We wouldnt wish our pain and suffering on anyone else, and we question what we did to deserve it and why its happening to us. My point is that you are not alone, that we are all suffering with you, if not in the exact same way. We all want Crohn's to leave us alone and for someone to figure this thing out and fix it.

I am truly sorry that you are feeling as you are. Depression to me is the worst of all the Crohn's symptoms, as it depletes our desire to keep moving forward. Never give up, never surrender. You can and will beat this. Your hair will regrow. (mine wont, I had an uncle who was bald at 19) You can and will be strong. We will be strong with you.

I wish you well. I encourage you to talk to someone, on here, and face to face. Press on and keep the hope alive!
 

Jessi

Moderator
I hope I'm not out of line when I share my beliefs with you... Forgive me if I am. I have good intentions.

I believe that the God can be related to an excellent baker. Imagine making bread. It needs to be kneaded. We let it rise, then we punch it down, then let it rise, then punch it down, etc. The yeast is releasing gas, making air pockets, expanding the dough, refining it... It's important to punch it down to refine it.

We get knocked around quite a bit with this disease, don't we? I use this analogy to remind myself that God loves us and "punches us down" only to refine us. We may be some of His most refined children.

I know how you feel. I ran my fingers through my hair yesterday. With one stroke, my hand was filled with strands of hair. I counted - yes, like you - 39 hairs from one stroke! I was mortified! I called my mother, worried. She calmed me down and offered a couple of really fashionably modern wigs that she owns. Wigs are expensive... especially the good ones. Do you have access to any? It may turn out to be a good investment for some.

Frankly, I think you are beautiful, from the pictures I've seen of you. You having stunning eyes! Your eyes would stand out even more if you didn't have hair. ;)

Hang in there! Remember you are beautiful and that God's a great baker! He made you perfect!
 
@ Jessi. That is a wonderful analogy.

I'm not losing my hair, TBH. But, I think I understand how you feel. People who don't have these kinds of issues would pass them off as trivial, but they've never actually had their hair fall out at such a young age. Sure, it's just hair. But, on top of the Crohn's, and the terrible things the Crohn's does to your head, these kinds of things matter. So, don't beat yourself up because you're upset.

Buy a bandana. Be a pirate. <3 We love you.
 

xJillx

Your Story Forum Monitor
I am so sorry you are losing your hair, Joleen. I'd be really upset to. I sure hope that this side effect is only temporary.

Did you get your new do cleaned up by a professional? I bet you look great with short hair!!
 

LOSTnut

Poopy
Have you heard about Biotin? I used it when my hair got really thin and I lost a lot with every comb stroke, washing, styling ... you name it. My hair dresser recommended it and I was able to stop it with one daily dose of 5000 mcg. Although, I do not remember how long it took. Just all the sudden noticed that it didn't happen anymore and the hairdresser confirmed that the thinning had stopped.

On another note, my hair dresser herself wants to let her hair grow out from a pixie cut (she is healthy though) and told me she takes 20,000 mcg daily when I commented on the length of her hair between visits. I really thought she had extensions put in. Shows you what I know.

To caution you, I have read here on the forum that Biotin seems not to work for everybody .... probably we should start a thread on its effectiveness?

Good luck, girl! :)
 
Hi,
Have you had your iron (ferritin levels) checked ?
Iron deficiency can cause hair loss even if you are not anaemic. The level should be above 60-70 to allow regrowth and stop further hair loss.
 
Hi Joleen,

I logged on today and searched for "hair loss".... I am 24 and in the exact same boat as you. I was in the hospital for about 2 months total starting in may..... and ever since then I have been losing big hunks of hair in the shower.... when I brush it and even by not doing anything it would just fall out.

For the holiday I spent the night with my boyfriends family... I showered there... and was sobbing in the shower this morning. Just hand full after hand full my hair was falling out. I brushed it and an entire brush full came out. I combed it and even more came out.

I can't tell you how many times I cried today because of this.... and every time there is a lot falling out. My boyfriend's mom just got done with chemo for breast cancer... and her hair is just starting to grow back. She politely walked over to me and tried to brush the hair off my back and shoulders. She knows the pain and shame that comes with female hair loss. I don't know why I am losing so much hair. Some woman have a lot of thick hair and therefore a little thinning doesn't bother them.... but I have fine/thin hair and with all the hair I pulled out of my brush today.. I am surprised I have any on the top of my head still.

Could is be stress that we are losing our hair? My doctors say I let stress get to me too much. Maybe our medications? A lot of crohn's medications have that side effect. Or poor diet? I know healthy foods hurt me just the junk food goes down just fine. I am crying while typing this...because for the longest time the only thing I ever liked about myself was my hair - it always looked good - and it was the only thing I was proud of. Now ... or soon I may not have anything I like about myself.

"Jessiam" your words struck me today. Although what we are personally going through is bad to us. Its not the worst. And some times I really think the depression and shame is the worst part of crohn's....the cramps I can usually sleep off but those stay with you no matter what.

Well, I guess through all this what I am trying to say is - don't let people tell you that losing hair is not a big deal - because it is. Don't let people be little your worries - because they are real. You are not alone, and I too am in my 20's and am struggling with unknown hair loss :( I hope you can figure out why this is happening.
 
Hi,
Have you had your iron (ferritin levels) checked ?
Iron deficiency can cause hair loss even if you are not anaemic. The level should be above 60-70 to allow regrowth and stop further hair loss.
I second this. I have fairly significant hair loss as well, apparently due to low ferritin, although I am not anemic. My ferritin was 16 last year, and its up to 32 now (geez, that took awhile!) but at least it's moving in the right direction! I was told that around 40 the hair will stop falling out and then around 70 will actually regrow.

My dermatologist is the one I talked to about this, and when I mentioned I had some hair loss as well as fatigue at the time, she did a whole slew of bloodwork. She tested me for hepatitis, thyroid issues, ferritin, metabolic panel, cbc, etc. So apparently there are a lot of reasons that women can lose hair.

Try to hang in there. I hope you figure out what the problem is, b/c I think that is important to getting it resolved.
 
Hey Hun
I have really bad hair loss an I can't pin point what exactly causes it but in my case my docs put it down to .....

Malnutrition ( poor diet , or lack off lol)
Steroids ( I'm stuck on budesonide max dose , since bloody April )
Stress
And anemia .

I'm lucky that I have no bald patches yet coz my hair is thick but I end up with frizzy baby hair where I get regrowth, what a pain lol
I'm sure it all goes hand in hand with crohns an meds , as I had no problems before I got ill.
I hope things get better an maybe introduce a few more vitamins etc if u can !
I hope it gets better for u soon ( all of u )

Jen XX
 
Hey Hun
I have really bad hair loss an I can't pin point what exactly causes it but in my case my docs put it down to .....

Malnutrition ( poor diet , or lack off lol)
Steroids ( I'm stuck on budesonide max dose , since bloody April )
Stress
And anemia .

I'm lucky that I have no bald patches yet coz my hair is thick but I end up with frizzy baby hair where I get regrowth, what a pain lol
I'm sure it all goes hand in hand with crohns an meds , as I had no problems before I got ill.
I hope things get better an maybe introduce a few more vitamins etc if u can !
I hope it gets better for u soon ( all of u )

Jen XX
 
Thanks everyone , Im feeling a little better today , I keep telling myself it's just hair but somedays i just feel i can't cope. I spoke to my GP and am back on antideppresents and anxiety meds again.
Hi Jesse : Thankyou for your post , im trying to remember how bad it was before the infliximab and how much pain i was in , It really could be a lot worse, thanks again :)
Hi Jessi & Ben: Thankyou , I havent bought a bandana but did buy a wig online yesterday - it has a fringe which i've wanted for a while but because of my hair's natural parting never managed to have one before - so kinda excited to see it on (hope it arrives soon) :)
Hi Jill : Im booked in with my hairdresser on Wed so im gonna see if she can put some layers into it to give it some volume.v I've been growing my hair for a year so it was about time for a change :)
Hi Heike : Im takin Biotin and using Nioxin shampoo , i have some new hair growth coming through , so it is still growing so going to keep taking it, Thankyou :)
Hi Littlemiss, Mayflower : My iron was low , i take iron tablets and also had an iron infusion 2 weeks ago , have loads more energy since then :)
Hi Misfit : Sorry your losing your hair too, My hair was never thick anyways so i do notice how much its thinned a lot. I am a little stressed , i've just started back on my anti anxiety meds and some antidepressents. My Gi thinks it's the Remicade doing it :( But it works so im just going to have to except it now, Just oredered a really pretty wig , much nicer than my old hair :)
Hi Jen : i Am a little anemic , have had an iron infusuion recently. My diet could be better so really need to start making an effort there , and i am stressed , have as of yesterday been put back on my anti anxiety meds and anti depressents so hopefully they will help calm me down :)
Thanks for your kind comments everyone , this website really is so helpful and it really does help me to feel better when i speak to some of you who are going through the same or worse , it really helps to keep things in persepective , Thanks again, hope everyone is well :) x
 
Hi Joleen,

Just wanted to say I know how you feel. I have alopecia (scraping the shallow end of the gene pool for sure!!), a bit different to losing your hair from meds but I have definitly been thru the whole run of emotions that losing your hair brings up. It's not just hair, it's part of your identity and it's an incredibly hard thing when you lose it. When my hair got to the point of no return I bought a wig and shaved the rest off, was the best feeling EVER!! No more hair in my food, bed, clothes etc etc, was such a great feeling to get rid of what had been making me so miserable for such a long time...so I can understand your compulsion to cut it off, you're not crazy you're human and you definitly dont have to apologise for that. You've been thru such a big thing with the chron's and with the hairloss on top you must be starting to wonder who you are...I'm the same just in a different order! It's tough going and just wanted to let you know that there's someone out there who knows what you're going thru, really appreciated your advice when I was first diagnosed so hope this has helped in some way xx
 
Hey Soretum,
I just feel like such a wimp for moaning, They've said that it's likley it will come back so moping about it seems quite silly when there are people like yourself who will always struggle with it. I feel better today , Some days i just get really down about it all but i am really trying hard to get on with it. I think because i've been growing my hair for so long and just got it to a lengh and style i like , then it falls out. At least when (if?) it comes back it's going to be in good condition :)
It seems like so many of us on here are going through this , so i don't feel so alone anymore + Ordered a really nice wig , kinda excited to recieve it lol.
Thanks for your support , i really appreciate it :) x x
 

Carrie630

The Prettiest Princess
I had really long hair when it started to fall out. The longest it had ever been. It was really bad in the front. I couldn't stand it one day and, like you, cut it all off. I saved some in a bag though and gave it to my wife. She still has it.

I'm lucky in that I do a pretty good job cutting hair so I've been cutting it myself, but basically I have a short hair cut. I snip at it so that it easily covers up the two side spots, and I moved my part to a thicker section of hair.

I wash my hair about every other day. If I'm sick and moping around the house it may go two days. I rinse my hair most days that I don't wash it. Now that it's short there isn't much to do combing-wise. I use a wide tooth comb and then finger style. I don't know if its medication or the change in hair grooming or a combination, but I have baby hairs that seem to be encroaching on the bald parts. I'm going to be taking cam pics so that I can compare them over time. I lost my old pictures when my computer died.

I still lose hair, of course, but it's a lot shorter so my fingers don't get tangled with shed hair when I wash it, or comb it, or touch it, etc.. It's just not as in your face that it's happening.

(my avatar is an older pic, but it was after the start of the hair cuts so you can see how it covers the sides there)
 

Carrie630

The Prettiest Princess
yeah I can't wait to see the wedding pics :) I have a couple lace front wigs, but I haven't quite figured out how to wear them yet. I need wig glue or wig tape I guess.
 
Hi Joleen,

Sorry to hear about this problem. I have this same problem, I have thinning in my bang area. I'm guessing mine is due to my vit deficiency, iron, vitD, vitb12, calcium...etc...so I do this. I know it stimulates blood flow, which is good for your scalp. So here's the thing:

Get some coconut oil, preferably some goopy thick kind. Make sure it's natural, no weird chemicals or anything. Its thick and weird but you just scoop it up and start gently rub it in to your hair Line, scalp massage very gently with your fingertips. I put enough in, and do this like once w week and massage it for like 15 min. Is tiring so if there is some one do it for you it's probably more practical that way. Rinse with warm water, it's supposed to help I think it does, my hair falls out a lot. It's bad. I totally feel your pain. Best wishes, enjoy your new wig. I hope this helps. Some?

Best, lots of hugs,

Ceci
 
Im also wondering how the wigs may attach, Double sided tape or something. Maybe check youtube they have everything on there (thats where i learned to curl my hair with my flat iron/Straightners) Wig still aint here :( im like a kid at christmas , really want my wig now lol :)
Im going to try upload the wedding pics tonight off a diffrent computer , my hair looked great (lots of padding and extensions lol)
I will get some coconut oil ASAP , I've tried everything but not heard that one before , so will give it a go , thankyou Ceci :)
 

Jessi

Moderator
My momma will be here tomorrow with the wigs that she's lending me. I'll let you know what I learn about how to wear them. Of course, there are different kinds.

I feel like a kid waiting for Christmas, too. My wigs should be here by noon tomorrow. I think she said that they are brown with blonde streaks, so I guess I'm saying goodbye to my red hair. I'm kinda sad about that, but more happy that I will have hair - whatever the color. :D
 

Jessi

Moderator
I got my wigs a couple days ago. One of them is held on with a built in net type thing, with adjustable elastics in the back. It is beautiful and looks so real. It even has a skin-colored plastic-like base that is visible in the part, making it look more real. It's red with blonde streaks, so very similar to my real hair. The other is dark brown and very long. It's styled with a thick black headband that holds in onto my head very comfortably. No need for glue or anything for either one of them.

Did you get your wig yet?
 
Hey i got my wig , It's awful lol
Cost me about £100 and when i put it on i honestly look a little like Rod Stewart.
Im going to Send it back and order one from somewhere else i think.
Im Glad yours where good , Put some pictures up if you can , Like to see what they look like :)
 
Hi guys,

I have my hair custom made in NZ now but when I got my first one I was still living in London and got it from a place called Trendco in Notting Hill, not sure if they do internet orders but might be worth a look. Lace front wigs are probably the best, look really natural along the hair line. You can use double sided tape to keep them on but I didn't, they will just sit there but tape is good for a bit of security. You can get them styled by a hairdresser as well, my first one was synthetic and I got my hairdresser to fix it up a bit, the ones I get now come completely unstyled so you can cut them how you want.
THere's also a website called simply wigs, I've never got one off there but they do some nice looking ones and have good accessories like stands and stuff.

Good luck girls!
 

Jessi

Moderator
Hey, Jo, I told you how great my wigs look, but when I put them on, I had different feelings. The dark one looks hideous on me, because I am so pale. I think it looks marvelous on my daughter, though. :) The red one could look better, but it's not terrible. I think I'll get it cut a bit shorter. The bottom flips out, but the curls are too big for my taste. Plus it has a lot of layers. Maybe a long a-line would work. My wigs were a gift, so I'm not wasting money when I tweak them. ;)
 

xJillx

Your Story Forum Monitor
I am sorry your wig wasn't what you expected. Is there any shops near you that you can go and try them on before you purchase?
 
My new wig just arrived ,It's a 3/4 one (as i still have some hair) so it sit's a little back from my hairline andyou cover the join with a hair band. It's really nice , very thickand dark and about the same lengh as my old hair (very Kim Kardashian looking) So im quite pleased with it. Also found a really nice lace front one that i liked. I didn't realise that you can get glue for the lace front ones that holds them in place. Going to order one just incase i lose the little bit of hair i have left. Glad your all sorted Jessi. It's proper hard work this wig shopping lol :)
 

Jessi

Moderator
It is hard... and expensive!!!!

I am so glad you found one that suits you. I bet you look gorgeous in it.

Keep smiling. :D
 
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