Let’s talk about hair loss and Inflammatory bowel disease (IBD). A 2015 study stated that 33 per cent of people with IBD reported experiencing hair loss. People with Crohn’s disease and ulcerative colitis can lose their hair for a number of reasons, so let’s explore some of those.

Hair loss after trauma

The most common cause of hair loss in IBD is Telogen effluvium. Telogen effluvium is a form of temporary hair loss that usually happens about 12 weeks after stress, a shock, or a traumatic event.

People with Crohn’s disease and ulcerative colitis may experience all of those things, as a direct result of IBD. Traumatic events may include diagnosis, the onset of a flare, distressing symptoms, or surgery. It will obviously depend on each individual’s personal experience and perception, as to what constitutes a “traumatic event”.

Hair loss due to malnourishment

There are multiple reasons for malnutrition in people with inflammatory bowel disease. We might eat less because of poor appetite, nausea, or pain. Malabsorption could also be a contributor, which might be the result of disease activity or surgery. Blood and protein loss can also contribute. Plus, many of us can’t tolerate certain foods, which can lead to a non-varied diet and nutritional deficiencies. B12 and iron deficiencies are linked to hair loss.

Hair loss as a treatment side effect

Some of the medications used to treat Crohn’s disease and ulcerative colitis are associated with hair loss. Azathioprine (Imuran) and Mesalazine (Mesalamine) list hair loss as a rare, or uncommon (may affect up to 1 in 1000 people) side effect. With Azathioprine, if you have an inherited NUDT15-gene mutation, there’s a higher risk of hair loss.

Hair loss is a common side effect (may affect up to 1 in 10 people) according to the patient information leaflets for Infliximab (Remicade), Methotrexate, Humira (Adalimumab), and Golimumab (Simponi).

Hair loss as a “related condition”

It’s quite common for people who suffer from immune-mediated inflammatory diseases to be more susceptible to others. IBD and alopecia, particularly Alopecia Areata, appear to be strongly associated. Alopecia areata, much like IBD, is unpredictable. Some people lose large amounts of hair, and others just small patches. It might grow back and fall out again later, or it might grow back and never happen again!

Surgery for IBD, such as a resection, or the creation of an ileostomy, colostomy, or Jpouch, will often include more than one of these factors. It can be traumatic, a shock to the system, stressful, and can involve periods of not being able to eat well. New treatments might also be introduced at this time.

My experience

For me, it’s been a fairly regular occurrence since my diagnosis of ulcerative colitis in 2007.

Emergency surgery followed that diagnosis. I was nil by mouth for a few weeks following surgery because post-op ileus meant my intestines wouldn’t work. Then, I needed further surgery due to sepsis, which might have been a factor in the post-op ileus lasting so long. I was incredibly weak and obviously malnourished.

It’s one of those things that I find particularly triggering. Whenever I notice I seem to be losing more hair than “normal”, I begin to panic. I’ve spent years trying to grow my hair back, but flare after flare, and surgery after surgery, have resulted in me constantly having multiple stages of regrowth at one time. In periods of feeling well, any hair loss causes me to worry that my health is worse than I realise.

The thing I have to constantly remind myself is that healthy people also go through stages of losing hair. It’s a completely natural process!

The natural hair growth cycle

The four stages of the hair growth cycle are anagen, catagen, telogen & exogen.

Anagen is known as the active, or growth phase. The follicle pushes out new hair growth; faster in Summer than in Winter. This phase typically lasts 3 to 5 years, but it can last for up to 7!

Catagen signals the end of growth. Hair remains in place, but blood supply is cut off, follicles shrink, and hair growth slows down. This phase typically lasts 10 days.

Telogen is a resting phase. Hair remains attached to the head but is no longer growing. New hair is already starting to form in the follicles during this stage. It’s estimated that around 10-15% of our hair is in this stage at any one time. This phase typically lasts 90-100 days.

Exogen is the shedding phase. Hair strands are released from the follicle and fall out, helped along by brushing and washing. This phase typically lasts 2-5 months. Anagen then starts again in that follicle.

So, next time you think you’re experiencing hair loss, take a breath and try not to panic.

Firstly, maybe it’s nothing ominous at all.

Secondly, if it’s IBD related, it will likely grow back.

Thirdly, if it’s any comfort, you are not alone! Hair loss IS common in IBD. Science says so!