If you are an Inflammatory Bowel Disease (IBD) patient, and you’ve experienced hair loss, you are not alone
A recent cross-sectional study found that “Thirty-three percent of [IBD] patients reported a history of hair loss”. 1http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284339/
Count me in as one of those 33%!
But, what causes an IBD patient to lose hair?
There are multiple factors to consider when an IBD patient is experiencing hair loss. Many patients have reported hair loss as a side effect of medications used to treat their IBD.2http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284339/ And, some medications can be associated with hair loss in some patients. 3http://www.ncbi.nlm.nih.gov/pubmed/19420815/ But hair loss in Inflammatory Bowel Disease is also associated with nutritional deficiencies, hormonal imbalances, and both acute and chronic illness.4http://www.ncbi.nlm.nih.gov/pubmed/23624889
The focus of this article will not be to look at all possible factors that contribute to hair loss in IBD. Just like IBD, itself, hair loss associated with IBD is a complex thing that needs to be addressed on a patient-to-patient basis with the help of qualified medical professionals. However, I would like to focus on the one thing that is associated with most cases of hair loss in IBD patients: the IBD, itself.
Hair loss can be a symptom of Inflammatory Bowel Disease
Hair loss has been observed in IBD patients enough over the years, that it can be considered an extra-intestinal (meaning outside of the intestines) symptom of Crohn’s disease and ulcerative colitis 5http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188947/. Although not a terribly common scenario, hair loss can actually be the first recognizable symptom of Inflammatory Bowel Disease for some patients.6http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1292143/ 7http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188947/
Although hair loss has long been reported by IBD patients and observed in various studies, it’s still a lesser known and understood aspect of Crohn’s and ulcerative colitis. Fortunately, thanks to ongoing research and an ever-improving understanding of these diseases, there are some basic things we can understand about hair loss in IBD.
In 2013, Guy’s and St Thomas’ Hospital in London conducted a scientific literature search spanning 46 years (1966-2012) to better understand the prevalence of hair loss experienced by IBD patients. Their search found that:
“Telogen effluvium associated with acute or chronic flares of IBD is probably the commonest cause of disease-related hair loss…” 8http://www.ncbi.nlm.nih.gov/pubmed/23624889
So, this thing called “Telogen Effluvium”, which is associated with active disease in Crohn’s and ulcerative colitis, looks to be the most common cause of hair loss among IBD patients…
Ok, so what is Telogen Effluvium?
To understand Telogen Effluvium, we have to know a little about the growth phases of hair. When describing the growth of human hair, there are three basic phases: anagen, catagen, and telogen. 9http://emedicine.medscape.com/article/1073488-overview Anagen is the “growth” phase of hair, catagen is the “transitional” phase, and telogen is the “resting” phase of hair. Individual hairs start in the anagen (growth) phase, then become catagen (transitional), and finally become telogen (resting) before being shed to make room for new anagen (growth) hair. Catagen is a very brief phase 10http://emedicine.medscape.com/article/1073488-overview and, for the sake of this article, we only need to worry about the anagen (growth) and telogen (resting) phases.
To put it simply:
- The anagen, “growth”, phase is when your hair is actively growing (complicated stuff, I know 😉 ).
- The telogen, “resting”, phase is when your hair is not growing (shhhh… it’s resting! 😆 )
When you’re healthy, the vast majority of hair on your head will be in the anagen phase at any given time, while about 5-15% of your hair will be in the telogen phase. 11http://emedicine.medscape.com/article/1071566-overview#a0104
There can be quite a bit of variation in how long these phases last in people, but typically the anagen (growth) phase lasts about three years, while the telogen (resting) phase lasts about three months. 12http://emedicine.medscape.com/article/1071566-overview#a0104
When a hair is in the telogen (resting) phase, it remains where it’s at for a few months or so, until it’s shed to make room for new anagen (growth) hair. 13http://emedicine.medscape.com/article/1071566-overview#a0104 So, if you normally only have 5-15% of your hairs in telogen (resting) phase at any given time, you probably won’t be noticing much difference in the thickness of your hair even as you are actively shedding it to make room for new anagen growth.
But what if a lot more than 5-15% of your hair is in telogen (resting) phase?
Well, then you’re definitely going to notice when all of that telogen hair falls out to make way for new anagen hair! And, that is when “Effluvium” comes in to play. Effluvium means “an outflowing or shedding, as of the hair”. 14http://medical-dictionary.thefreedictionary.com/effluvium So, “Telogen Effluvium” refers to a noticeable outflowing or shedding of telogen hair.
But, what triggers this mass shedding of telogen hair?
According to Dermatologist Elizabeth CW Hughes, MD:
“Telogen effluvium is triggered when a physiologic stress or hormonal change causes a large number of hairs to enter telogen at one time. Shedding does not occur until the new anagen hairs begin to grow. The emerging hairs help to force the resting hairs out of the follicle. […] The interval between the inciting event in telogen effluvium and the onset of shedding corresponds to the length of the telogen phase, between 1 and 6 months (average 3 mo).” 15http://emedicine.medscape.com/article/1071566-overview#a0104
Ok, let’s break this down a bit:
You know how when you’re in a stressful or frightening situation, you can go into “fight or flight” mode, which causes your body to stop focusing on mundane, everyday tasks like digestion and, instead, prepare the body to run from or fight off a lion? 16http://www.ncbi.nlm.nih.gov/pubmed/7570024 That’s an acute stress response. (And that’s a cute lion →)
Well, Telogen Effluvium could be looked at as an extreme sort of stress response 17http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1868104/ 18http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2111110/
This is an oversimplification, but in many cases of Telogen Effluvium, it’s like your body is under so much “stress” that it decides it can’t focus on growing hair right now. For IBD patients, that “stress” is likely active disease and/or surgery. 19http://www.ncbi.nlm.nih.gov/pubmed/23624889 20http://journals.lww.com/anesthesia-analgesia/Citation/1984/01000/Telogen_Effluvium_after_Anesthesia_and_Surgery_.17.aspx
Of course, Telogen Effluvium can also be associated with hormonal changes. But, Inflammatory Bowel Disease is also strongly associated with hormonal changes and problems 21http://www.ncbi.nlm.nih.gov/pubmed/6384458 22http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959350/. So, in many ways, we keep coming back to the IBD, itself.
To summarize, here is roughly what happens when you lose hair due to Telogen Effluvium:
- Physiologic stress or hormonal change occurs (possibly because of active or recently active Crohn’s or ulcerative colitis, or surgery)
- This triggers a large number of hairs to enter telogen (resting) phase
- The telogen (resting) hair begins shedding around the end of a typical telogen phase (1-6 months)
Pay close attention to #3 above. With Telogen Effluvium, you are shedding your telogen hair pretty much like you always do: 1-6 months after it enters the telogen phase. The difference is that far more of your hair is in a telogen state. This means that you will lose a lot of hair in a relatively short amount of time. It also means that you may mistake the cause of your hair loss, because it was triggered by something that happened months earlier!
This is the really important part to understand, so I’m going to say it again in much bigger letters in a fancy quote box, and then I’m going to reiterate it with some nice images:
You may mistake the cause of your hair loss, because it was triggered by something that happened months earlier!
Here is a possible scenario that may happen because of this:
- An IBD patient enters a severe flare-up of his disease, which triggers a large amount of his hair to enter the telogen phase.
- One month later, the patient is started on a new medication to treat his severe IBD.
- Another month passes. The new medication is starting to help control the damaging inflammation caused by his IBD. Coincidentally, all of his hair that was in telogen phase is shed to make room for new anagen growth (as it generally does after 1-6 months), causing massive hair loss.
- The patient assumes the new medication is causing the hair loss, when in fact, the severe IBD, which is now being managed by said medication, is what triggered the hair loss.
- The patient becomes non-compliant (stops taking the new medication), or insists to his doctor that he needs to be taken off his medication because of the hair loss.
This is just one possible scenario, but it does happen. I have made the mistake, in the past, of thinking my hair loss was caused by a new medication. Fortunately, I had a knowledgeable doctor who was able to confidently explain Telogen Effluvium to me. He provided me with reassurance (something we will come back to) that my hair loss was not permanent. And he also reminded me how important it is to control any damage being caused by my Crohn’s disease.
The purpose of this article is not to convince people that medications can’t cause hair loss.
There have been associations found between certain medications and hair loss. 23http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0014051/ 24http://www.ncbi.nlm.nih.gov/pubmed/11305380 But, associations do not mean that one thing caused the other. With more research being done, it is becoming clear that medications are not to blame as much as we might have once suspected. 25http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284339/
IBD medications like Remicade (infliximab) and mesalamines may help prevent hair loss in patients
A very recent cross-sectional study showed that IBD patients who had been on anti-TNF medications (for example, but also most significantly, Remicade) and/or mesalamines (aka 5-ASA drugs, like Lialda) were actually less likely to have experienced hair loss. 26http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284339/ In addition, they did not find a difference in hair loss between patients that had been on immunomodulators, or steroids, and those that hadn’t. 27http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284339/#__sec5title.
And, very notably, among the patients included in the study:
“Sixty-two percent of patients with hair loss experienced their hair loss around the time of an IBD flare.”28http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284339/#__sec5title
So, here we see more evidence to suggest that hair loss in Inflammatory Bowel Disease tends to be associated with the state of the disease itself. But, hair loss is very distressing, whether or not you know what triggered it! I’ve experienced significant hair loss on multiple occasions over the years, even as a child, so I know this from first-hand experience. If you’re like me, knowing what Telogen Effluvium is will not be enough. You will want to know:
Will my hair grow back if I have Telogen Effluvium?
While losing hair is absolutely an unwanted additional stressor on top of already being sick, it’s important to receive reassurance that, in most cases, your hair will grow back in time. According to Dr. Hughes:
“Because acute telogen effluvium is a reactive process, which resolves spontaneously, treatment usually is limited to reassurance.” 29http://emedicine.medscape.com/article/1071566-treatment
In other words, as long as the underlying cause is treated (which, in the case of IBD patients, is most commonly associated with active disease), the telogen effluvium will resolve itself.
Now, let’s tie all of this knowledge together by looking at a real-world example
Hearing about a documented case of hair loss and regrowth in another IBD patient may help provide you with some reassurance. Well, here is just such an example of a recent case study about a child with Crohn’s disease:
“Telogen effluvium was the first symptom of Crohn’s disease in a child, and […] should be considered as an extraintestinal manifestation of Crohn’s disease.” 30http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188947/
This 10 year old girl experienced Telogen Effluvium one year prior to her diagnosis with Crohn’s disease. Being that it is an extra-intestinal manifestation of Crohn’s disease, it was one of the signs that led to her finally being diagnosed.
Here is what her hair looked like before she began treatment for her Crohn’s disease:
And here is what her hair looked liked one year later, after receiving proper medical treatment (involving Remicade, immunomodulators, and steroids) for her Crohn’s disease (the underlying cause of the Telogen Effluvium):
Here are some main points to take away from this article:
- Hair loss is a common problem among IBD patients.
- Telogen Effluvium associated with active IBD seems to be the most common cause of hair loss among patients.
- Telogen Effluvium can seem like it’s caused by something other than active disease or surgery (such as medications) because of the timing of hair loss.
- Telogen Effluvium hair loss is reversible.
- If you experience hair loss, discuss it with your doctor. Please do not make any decisions about your IBD treatment without discussing it with the physician treating it. This part is important, so it bears repeating in bigger letters:
If you have IBD and you’ve begun experiencing hair loss, please speak with your doctor about it.
There are many reasons why an IBD patient may be losing hair, and it’s important to work with a qualified medical team to determine the cause so you can work towards a solution. Fortunately, the causes of hair loss generally associated with IBD, such as nutritional deficiencies, hormonal imbalances 33http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188947/, side effects of medications, and acute and chronic illness, can be reversed. 34http://emedicine.medscape.com/article/1071566-treatment