IBD is an invisible disease.
So, appropriately, the theme for World IBD Day this year is, “Making the Invisible Visible.”
There’s so much more that goes on than some sassy bowels. In my ulcerative colitis journey, there have been five major ways that the disease has stealthily infiltrated my life.
We’re about to dive into part three, so if you haven’t read the previous posts, you can do that here:
- Introduction to World IBD Day
- Invisible Aspect #1: Joint Pain
- Invisible Aspect #2: I Dropped Out of College
Without further adieu, number THREE is that I deal with hair loss.
I was on Remicade for a while, and within six months of starting, I noticed that my hair was becoming so thin and brittle that it would fall out.
Eventually, I stopped Remicade for nearly a year, and during that time my hair grew back thick and luscious like normal. Now, I’m back on biologics—this time, Entyvio—and my hair has started to fall out again!
The interesting thing is that it only falls out in certain parts of my scalp. It follows a circular pattern—starting under my bangs and closely hugging the stretches behind my ears, and then down to the nape of my neck.
Not everyone on biologics experiences hair loss, but it certainly seems to be a recurring theme. At this point, doctors aren’t sure exactly why people on biologics experience this.
How Hair Loss Affected Me
When it was at its worst, my hair would fall out in the shower and whenever I brushed it. It made me pretty emotional, at first.
I love dressing up and letting my long hair flow without it looking like my hairdresser gave me a botched haircut.
I also enjoy going outside, exercising, and playing sports, and it’s much more comfortable when all my hair can stay tight in a ponytail. But I rarely wear my hair up anymore because my brittle, wispy hair is too short to stay inside the ponytail!
If you also experience hair loss, here are some tips I’ve learned to disguise it and prevent it from getting worse:
Beanies and hats and scarves, oh my!
The simplest solution is to cover up what you can—in style! If you have hats, beanies, scarves, etc. they can be used to conceal the hair loss both around your forehead and the scraggly bits hanging around your shoulders. Also, you’ll look fly.
Billions of bobby pins
Use tons of bobby pins. Take them with you literally everywhere. The only way my hair looks cute in a ponytail now is to pin up all the baby hairs with bobby pins. It may take a little longer to do your hair, but it’s seriously worth it on those hot days.
Lay off the heat
To prevent any more thinning or damage, I refused to apply any heat directly to the crown of my head. No hairdryer. No straightener. No curling iron. I’d still dry my hair in the winter months, but I’d spare the emaciated strands.
Add a protective layer
To play it extra safe with the blow drying, I purchased a heat protectant spray and doused the damaged hair with it, just in case any already-thin hair caught wind of the blow dryer.
Hair growth serums
Experiment with hair growth serums. There are many brands out there! I used a brand called Grow Gorgeous, and although it didn’t make my hair look like it used to, I noticed that consistent use would definitely help the wispy hairs grow faster.
My GI doctor recommended the supplement BioSil (I buy two-months-worth on Amazon for $50). It’s filled with biotin and gives the body extra proteins that aid in the strong and healthy growth of hair, skin, and nails. For me, this is a wonderful long-term treatment, and I plan on taking it as long as I’m on a biologic!
Nutrients in the Diet
Also, there are some natural ways we can sneak extra hair-strengthening nutrients into our diet.
WHY: Protein can aid in hair growth because hair follicles are mostly made of protein.
HOW: Great sources of protein include shrimp, red meat, poultry, and lentils.
WHY: Biotin is required to produce keratin, a structural protein that makes up hair and nails.
HOW: You can eat up some biotin in yummy eggs, almonds, avocados, and beans (like we need any more reason to eat avocado toast! 😂)
Omega 3 Fatty Acids
WHY: Omega 3 is an anti-inflammatory, so it can especially help stimulate hair growth if the hair loss is related to inflammation (which is great news for IBDers since that inflammation is an autoimmune response.)
How: Get some Omega 3s into your diet by consuming salmon, spinach, chia seeds, and flax seeds.
A Note to My Fellow IBDers
We are fighters. Even though some side effects or symptoms might knock us down, there’s always a silver lining if we choose to find it.
For me, it’s never leaving the house without at least ten bobby pins in my purse.
An Invisible Disease
The point is: almost every medication will have side effects. It’s up to you to get creative, do some research, and think outside the box to come up with solutions that will help with your unique situation.
IBD is much more than an intestinal disease. It’s an invisible illness with sneaky, stealthy side effects and symptoms that no one would notice unless we decide to share them.
But I choose to share my story because AWARENESS → FUNDING → RESEARCH → CURES 💜💜💜
Follow me on social media for more comical misadventures!