Living with hair loss from inflammatory bowel disease (IBD)

Gemma Cleary was first diagnosed in 2001 with ulcerative colitis but in 2012 she went through a serious flare and it was discovered she actually had Crohn’s colitis - a form of Crohn's disease. In 2011 her hair started to fall out.

In this interview with IBDrelief she talks about what it’s like living with hair loss. You can read her full IBD story here.

Q: When did you first start to lose your hair?

A: My hair first started falling out May 2011. It wasn't just strands either, clumps were coming out when I washed my hair, brushed it, ran my fingers through it. It started around my hairline first, so I had no way of hiding it.

Q: How did it make you feel when you started losing your hair?

A: I was heartbroken, hair is a massive thing for a woman. It plays a huge part for me as I've always had big hair! I actually thought ‘how can I be pretty with no hair’?

I was 29...not old enough to be losing my hair! I had question after question that no one could answer. I think I cried over it, thought it would pass and it would be a phase. It wasn't, it got worse!

I took some time to get my head around it and started researching about it on the internet. I would love to tell you all there is some magic potion or it will pass in a few weeks but I don't have an answer for that.

People deal with things their own way but me, personally, I couldn't bear watching it fall out! So I took control and shaved it off!

Q: Do you know why you lost your hair?

A: My hair basically fell out due to my medication, trauma to my body & stress. At the time I was on Infliximab, steroids, Azathorpine and numerous pain meds.

The hair is obviously embedded in pores and all the toxins etc were trying to push out and it killed my hair roots. Little bit frustrating as the hair didn't fall out of my legs though!

Q: Have you received any treatment for your hair loss?

A: I had a few appointments with my specialist and gastro nurse. No one seemed to have any specific answers for me. I was far too tired at this point and poorly to question it too much. I guess I just took it on the chin that that's how it was going to be!

Q: What was the reaction from your family and friends?

A: Amazing! I'm a very lucky lady that I'm surrounded by love. Nothing seems to phase my kids - but the first time I shaved it off they were upset. It was hardest for my eldest as he was starting high school. Who wanted a bald mum?!

But that changed, they got very use to bald mum and then a mum that had many different hair colours! My other half likes to say: "Bald is beautiful". He's shaved my hair off, had my wigs on and his love for me has never changed. He truly does make me feel beautiful and doesn't bat an eyelid when I'm bald!

My friends, the same. Nothing but love and support. We have seen bad times together and my hair falling out was just a drop in the ocean. If anything I was encouraged to just be as I am.

The amount of times my wig has been on a child/friend/hubby-to-be's head is ridiculous!

Q: What was the reaction from strangers?

A: Now this was an interesting one. The sympathy eyes, the half smile...I wasn't dying I had lost my hair! Most occasions I had my wig on so many didn't know (it gets cold really quick with nothing there!). I can't say I had any bad experiences really. I even remember once being out for a few drinks with the girls and having a conversation about my hair and taking my wig off in the bar! I have accepted it, the ones important to me have accepted it. I couldn't care really what others thought.

Q: When did you decide to start wearing wigs?

A: I ordered my first wig when my hair had started to fall out and I knew it wasn't getting any better. I needed it for me, for when I didn't want staring at. When I just wanted to blend in and be ‘normal’. It was a protection blanket.

Q: Where did you get the wigs from and what are they made of?

A: Now I can get technical. I have lots of experience!

My first one was blonde, real hair, ordered from the States on eBay. It was quite expensive actually but looked amazing! With it being blonde I found that it needed to be real hair as artificial hair that colour is too shiny and looks fake!

Now, I am much darker. The darker colours can be fake hair as once the shine has gone a bit and you've had some usage out of it, there is no telling that it's fake!

My favourite website and, one I've recommended to friends is Celebwigs.com - hair by MisTresses. Very reasonably priced, packaged discreetly and delivered quickly! Also you can style the fake hair just like the real thing with your straighteners etc...just check that it can withstand the heat first!

Q: How many wigs do you have?

A: 2x blonde, 2x auburn, 2x bright red, 1x brown, 3x black = 10. See, I told you I like my wigs!

It's so easy to swap colours - no sitting at a salon, building colour, deciding you don't like it...with a wig it’s instant! Get out of bed in the morning, do my face and taaddaaarrr...perfect hair and far too many selfies to show everyone my new colours!

Q: How do the wigs make you feel?

A: Like me...

I have hair, I’m no different to anyone else. My wig is a security blanket, if I’m not feeling brave enough, on goes the wig. Having a rough day, not feeling great or looking really rough, on goes the wig. It just makes me feel like I did before I lost the hair I suppose.

Q: You are getting married soon - are you going to wear a wig?

A: I am indeed getting married soon and I can't wait! April 2016 can't come soon enough.

Everyone knows me as having long curly hair. My natural hair is growing now and the rate it's growing I think I should be able to put clip in extensions in to lengthen it as I daren't take the risk of pulling it back out with extensions. If it's not long enough then, yes, the wig will be on. My hubby-to-be isn't bothered whether the wig is on or not, it's purely for me.

Q: Has your hair started to grow back?

A: It certainly has and it's healthy. It's growing quite fast - or seems to be. It's a bit of a novelty to have hair, it moves in the wind and everything! Although, I have noticed I'm starting to get strands of grey...I'm getting old!

Q: How do you feel about your hair loss now?

A: Hmmm at first, I was heartbroken, then I got a wig and all was fine. After that it got annoying - it's quite difficult to tie a wig back in a ponytail out of the way so I just got used to not wearing it when inside.

Now, I think I'm lucky. My hair is growing back, it's healthy and will get to where I want it to be at some point. I'm currently using Plantur 39 shampoo and conditioner...it's amazing and helping so much too. It promotes hair strength, thickening and growth.

Q: What would your advice to anyone losing their hair be?

A: That's a hard one as everyone is different. There is no point in saying ‘it will grow back, it's only hair’ as that's not what you want to hear! So... look into why exactly your hair is coming out.

If it’s patchy...can you hide it? All coming out? Empower yourself and take control, shave it off - after all ‘bald is beautiful’!

Invest in a good wig that makes you feel amazing, get a few, different colours, different styles, have some fun with it as losing hair is hard enough. Get some decent shampoo and conditioner that promotes strong hair growth and health.

Be sad, it's an awful thing to lose your hair. So cry for it, be angry...but then let it go, smile, move on from it.

Take some pictures of your journey with it. Just because life has taken a different route than you want to go down keep going until you find the right route. Embrace it! Don't hide from it, confront it and be brave...we are all warriors.

Life doesn't stop because you've lost your hair - it could be worse!

Maybe it will grow back, maybe it won't, but just remember...there's always wigs!

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I was diagnosed in 2001 with ulcerative colitis, but in 2012 after a bad flare (and losing my hair) I was diagnosed with Crohn's colitis. I have six children and am due to get married in April 2016.

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