Someone recently asked me to describe Crohn’s Disease using only three words. My response…”two faced devil”. Yep, that’s right. Crohn’s Disease is a two faced devil. See, Crohn’s is a very complex disease that NEVER presents the same way in any two given patients. Honestly, it rarely presents the same way in the same patient. I used to refer to it as “Dr. Jekyll & Mr. Hyde”…but recently realized the inaccuracy of that description. Now, before those of you unfamiliar with Dr. Jekyll and Mr. Hyde get all upset and click away, I will give you the 2 second overview. Dr. Jekyll was an attractive and social doctor. He was able to function around others peacefully, but for some reason decided to create a potion to free his inner evil. That inner evil…Mr. Hyde. Mr Hyde, unlike Dr. Jekyll, was an ugly sociopath that ended up beating someone to death. While both characters absolutely had flaws, even with limited information, I think we can all agree that one is identifiably more evil/sinister than the other.
Well friends, unlike Dr. Jekyll and Mr. Hyde, everything about Crohn’s is evil. Crohn’s doesn’t have a peaceful side. Now, some of you are probably thinking, “wait a second, that can’t be right. Surely Crohn’s is peaceful when it’s in remission”. Well, I am so glad you shared your thoughts, so I can give you some little known information. News flash, even in remission, Crohn’s is a HORRIBLE DEVIL. Mind blown? Mine was a few year ago when I found this out. A lot of the medical books or articles on the web give you the impression that remission is some symptom free euphoria. If it is, I sure haven’t seen it yet despite having been deemed in remission off and on since 2011. Truthfully, I cannot identify one day since my earliest memory of symptoms at age 7, that I could classify as a symptom free day. If anything, I would say remission means nothing more than despite the horrible symptoms a chronie (as we call each other) is experiencing, no irreversible damage/inflammation is occurring.
The more I thought about how to describe Crohn’s using only 3 words, the more intrigued I became with quotes about Crohn’s or just general quotes that may apply to Crohn’s. To my surprise, I found a very interesting and relevant quote from Marilyn Monroe. Ms. Monroe is credited with saying “if you’re gonna be two face, at least make one of them pretty”. Nice words, right? When I came across this quote recently, it tickled me. Who knew Ms. Monroe was so insightful? A lot of auto-immune disorders need to take heed to her words. It sure would make living with them a little more tolerable.
Lately I have received several surprise visits from my Crohn’s Disease. As many of you know, I was hospitalized in August for 3 days and October for 6 days. Well, I was also hospitalized in January for several days as well. Each time that my Crohn’s paid me a surprise visit and disrupted my life, it was done in different ways; and no surprise visit looked like the other. The only similarity between the surprise visits is that each of them left me baffled by how my Crohn’s had chosen to show up.
I was diagnosed with Crohn’s Disease in 2011 after having battled with symptoms since I was 7 years old (roughly 1987). Historically, my symptoms consisted of mouth and/or nasal ulcers, severe bone pain, intense sharp abdominal pains on my right side, fatigue, nausea, severe diarrhea, and periodic constipation and rectal bleeding. Given all of this, you would think that the universe of symptoms that Crohn’s has to choose from is pretty much covered, right? Well, if you thought that you were wrong…just like me. Friends, I had no idea that MY Crohn’s could present with severe constipation, intestinal ulcers, clot like rectal bleeding, and blood flow loss to the intestines, in addition to the other fun symptoms I described above.
Like most auto-immune disorders, Crohn’s constantly changes how it presents in patients. This, in my opinion, is what makes Crohn’s difficult to diagnose or treat. This disease is constantly one step head of doctors, as if it is constantly mutating to combat medication. That, dear friends, is one of the things that makes Crohn’s difficult to live with. But, it is possible to keep the two faced devil in check. See, unlike Dr. Jekyll who was eventually overrun by Mr. Hyde, it is possible to keep Crohn’s in line and not have it rule your life. I am still trying to figure out how to do that, but I will share what I have come up with so far:
- Ensure you have a great medical team. This team should include great doctors. In my opinion, a great doctor has BOTH phenomenal clinical skills and bedside manner;
- Always take your medications. Listen, I know better than anyone that taking daily medication is a pain. I mean seriously, I am LITERALLY on 20. But, I also understand the consequences of even one missed dose. Crohn’s is difficult enough to tame if you do everything right, so don’t make it even harder by failing to take your medication;
- Monitor your stress. While stress does not cause Crohn’s, it also does not help keep Crohn’s in check. Let me say that again. Stress, DOES NOT cause Crohn’s, but being stressed does not help keep it in check. So, look at the stressful things in your life and find ways to address them. That may including parting ways with people, jobs, or etc.;
- Sleep is key. I LOVE sleep. I am LITERALLY in L.O.V.E. with sleep, and turns out that is a great thing. Sleep is a time for your body to repair itself, so getting a sufficient amount is critical. Like most people with auto-immune diseases, I battle with insomnia so it is not always easy to get enough sleep. But, I have enlisted the help of my doctors and will take sleep aids the nights my insomnia refuses to allow me to sleep; and
- Compose a great support system. I have said this numerous times, but cannot stress enough the importance of a great support system. Battling with Crohn’s or any other chronic illness will become overwheling at times, so you will need someone to help you carry the load.