I got down with Kahlia Billiet, long-time frankfurt and full-time babe. She was diagnosed with Crohn’s Disease when she was 14-years-old. She’s one tough cookie (and is also oh so sweet). I wanted to get to know her a little more, and spread her glass-half-full attitude.
First things first, how do you take your coffee?
I actually don’t drink coffee; I love the smell of it but I’m more of a tea person. Black iced tea for me, thanks!
When were you diagnosed with Crohn’s?
I was diagnosed with Crohn’s Disease in 2008 when I was 14 (however my doctors are now unsure whether it is Crohn’s or Ulcerative Colitis), although I was dealing with symptoms for about 2 years before that.
What was life like then?
I had a hard 3 years after my diagnosis. The medications that would usually work for someone newly diagnosed with inflammatory bowel disease (IBD) weren’t working for me and I dealt with symptoms such as fatigue, blood loss, severe diarrhea, abdominal pain and anemia while trying to finish school and my HSC. I was having multiple hospital admissions each year and had many blood transfusions and iron infusions. 3 years into diagnosis I was put onto a biologic infusion that suppressed my immune system and I got these every 4 to 8 weeks. This medication worked great for me and I was in remission for 7 years, it got me through 4 years university and my first few years of my career as a primary school teacher.
At the start of 2019, I caught salmonella in Vietnam which made my IBD flare severely. I spent months in bed and in hospital and I was unresponsive to all medications used to treat IBD. May 2019, during a hospital admission I was told my only option was to have a total colectomy (where they remove your large bowel–this is where most of my disease was) and was wheeled into emergency surgery about 2 hours later and from that I gained a stoma and ileostomy bag.
Since then I have had ups and downs; I have had to have another two emergency surgeries to fix complications that came from the colectomy and my psoriasis (which is linked to IBD) has flared due to the stress of surgery. This year I will be going in for two more planned surgeries to reverse the stoma- basically they will fashion my small intestine into the shape of a ‘J’ to do what the large bowel would do and I will no longer need to have an ileostomy bag.
How has your experience impacted your hair?
IBD has contributed to hair loss and thinning immensely. When I was younger, the harsh medications I was on caused my hair to thin out dramatically, I didn’t know what products to use so I kind of just dealt with it, I had to buy hair extensions for my year 12 formal just so that the hairdresser had something to work with.
Last year I experienced significant hair loss and thinning again, this was from the harsh medications they tried on me, the stress of surgery, scalp psoriasis and malnutrition/anaemia from being so sick, blood loss and being unable to eat.
You’ve been through a lot. Amidst it all, what do you like to do for self-care?
I love having a long bath with a bath bomb or some bath salts and using a face mask after. Meditation or going for a walk along the beach in the afternoon is always great as well.
We’ve already met many times, in your bathroom. Can you tell me which frank products you love?
I actually started out with the original body scrub for my guttate psoriasis which helped it out so much. Guttate psoriasis isn’t localized to one spot on the body; it spreads all over so topical creams aren’t really the best to use and light therapy is usually recommended. Since I have a suppressed immune system, light therapy isn’t great for me as I have an increased risk of skin cancer. I saw some before and after photos of people with psoriasis using the original body scrub and decided to give it a go, and I’m so glad I did.
The second product I started using was the scalp scrub. I saw people using this for their scalp psoriasis and saw on the website that it promoted healthier, longer and thicker hair. With the hair thinning and loss that I went through last year I thought that I should just give it a go. And I’m extremely happy I did, 6 months after starting to use it, my hair is looking so much thicker and healthier.
I also love the face moisturizer, scrub and mist.
I don’t like to pick favourites, but you can. Have you got one?
Definitely the original body scrub. Not only did it help control my guttate psoriasis, it leaves your skin feeling so soft and smooth.
What message would you like to give to other people living with Crohn’s Disease?
You will go through bad times, it’s inevitable. But there is always something that will work for you and life will get better (as drastic as it may be). In my case it was infusions for a good few years and now going through surgery and having a stoma has made my life worth living again. And just know that you are not alone. There is always someone to reach out to, if not in person, reach out to someone on Instagram. The IBD community on Instagram is somewhat large now and there will always be someone going through something similar to you who can offer advice.
Stick together and stay positive, babes.
And when in doubt, you’ve always got @ucrohn_kahlia and me.