Melvin & Me, Part 21: Crohn's Disease 101

It has occurred to me that while I have had some extensive conversation on my blog about life with an ostomy, I have not dedicated nearly as much time to the condition that required it in the first place, namely my experience with Crohn’s Disease.  It’s time to talk about that.

I think one of these is warranted here, too.

What up, my Crohnies?

So, I don’t know if anyone else uses that term aside from myself, but it makes me smile.  This isn’t to purposefully exclude those with other Inflammatory Bowel Disease (IBD) such as Ulcerative Colitis (UC), but to recognize that specific camaraderie, that set of shared experiences that persons with this disease have as a collective.  As a general disclaimer, the following pieces are elements that I have cobbled together from my own reading, consultations, and experiences.  If anyone needs further references, I would be happy to help you find them, but for the most part they will not be listed out here.  

ANYWAY, let’s start at the actual beginning:  What is Crohn’s Disease?

Great question.  I’m glad you asked. 

Crohn’s Disease is an autoimmune condition, where the body’s natural responses to pathogens (a bacteria, virus, etc. that can cause disease) is skewed in some capacity to perceive the body itself as a threat.  “Auto” in “Autoimmune” means “self,” so literally it means an immunological response to oneself.  This means that the normal immunological response of eliminating a dangerous/foreign substance and all of the potential firepower that your body has to complete that action is now aimed against the body that it was designed to protect.  Pretty messed up, right?  For example, my body  particularly targets my large intestine in the intent of protecting itself from some perceived threat.

Let’s compare it to a more normalized condition:  allergies.  When you are having an allergic reaction to something, your body has identified a foreign substance, something flagged as “doesn’t belong to the body.”  Logically, you could recognize that the pollen is, in fact, NOT harmful to your body.  But your immune system is trained to react, not to be logical.  So it closes off orifices to keep more of that substance from coming in, such as your eyes and throat; you are compelled to sneeze and/or cough to expel the allergen or even tear up uncontrollably; your body is responding to a threat as best as it knows how.  In short, anaphylaxis is a bit like burning down your home because you found a spider in it.  Again, the immune system is doing the best it can do within its genetic programming and with the data it has. 

Most autoimmune diseases, then, have the same principle ideas but are specific to different parts of the body.  Hashimoto’s is when your immune system has “decided” the thyroid and its byproducts are a threat and begins to attack there.  Rheumatoid arthritis is when your body thinks your joints are awfully shady.  In the case of Crohn’s, my entire digestive tract—from mouth to anus—is flagged as suspicious.  I have had sores in my mouth, ulcers in my large intestine, and a few issues with my rectum that have made sitting a difficult activity. 

So how does the body undertake this immune response?  One of the big signs/symptoms is inflammation; there will be an increase in certain white blood cells as the body gathers its metaphorical army; and it will be awfully difficult for the afflicted body part to continue its normal function while under constant assault.  How are you supposed to do your "normal" functions when you're under fire?  Another of the major symptoms as a result (and understandably so) is fatigue.  Fever is there, too, as a common weapon in the body's arsenal against infection.

What are some other common symptoms of Crohn's Disease?  

Let's start with the more obvious list, mostly things related to the digestive tract:  nausea, diarrhea, indigestion (dyspepsia), constipation, lack of appetite, pain (the kind and duration of pain depending on what areas are chiefly under friendly fire), blood in stool/poop, increased frequency in pooping, increased urgency in pooping, gas/bloating, sensitivity to certain foods and alcohol, sudden weight loss (no, this is EMPHATICALLY NOT a blessing in disguise), and along with some general infection points of fever/chills and night sweats.  

Here are some of the less obvious:   that idea of feeling better after having a big poop?  I haven't felt that in years.  I have a bevy of experiences and situations where knowing that I might need a bathroom suddenly and urgently has led to a great deal of anxiety--I still reflexively will estimate or make note of where the bathrooms are when I go to a place we plan on being for any considerable duration.  Constant pain from those seriously afflicted parts wears you down in more ways that one.  Too much blood in the stool (and not absorbing iron as well in the large intestine) has made me anemic more than once, meaning that since I had less iron in my blood (and overall less blood) I was not as efficient as I could have been in respiration and thus felt even more tired.  I have such a weird relationship with food:  when things are bad, I know that I need to eat, but I might A) have no appetite and B) be fully aware that eating at this time might hurt the whole way through; forcing yourself to eat is a pretty messed-up emotional nightmare in those times.  My skin has had some intersting breakdown points--if I'm not absorbing vitamins, they're not getting anywhere else that needs them either.  Pain near the rectum makes sex much more difficult and sometimes impossible. Depression.  Additional anxiety about finances, given how messed up our insurance/medical system is.  Organs that have been under constant assault from your own body not only decrease in their functionality, but they might become so scarred that they no longer work at all, for all are part of the tissue.  

Now, some of these signs/symptoms might not be happening ALL the time--when I am experiencing a flare up, where the body is on "red alert," so to say, that's when I'll be much more symptomatic, meaning that I'm experiencing a high amount and/or severe level of those symptoms.  With some aggressive tactics and time, I can be brought out of the flare-up and back into remission, a truce instated within my body once more as all parts begin to pick up the pieces once more.  

I went to a Crohn's Colitis Foundation (CCF) conference some years back and I still remember one talking point that went something like this:  there are approximately 168 genes that are tied to Crohn's and Ulcerative Colitis.  110 are shared between them.  There are twenty to thirty that are Crohn's specific and the rest are UC specific.  What does this mean?  It means that Crohn's and UC can have a lot of variation, that one patient might be able to have a glass of wine, another one could find that triggers flare-ups for them.  In fact, there are a few instances of Crohn's where the immune system isn't overzealous but rather is underperforming:  a complete restructure of thinking about the disease!  What I mean to say with this is that my experience is not specifically going to be the same as anyone else.  There will be a great deal of commonality between my Crohn's and someone else's, perhaps, but their own unique body chemistry and their particular situation might be very different.  

I have known folks who have had a less aggressive version of Crohn's--please don't assume that Crohn's equates to an eventual ostomy or even surgery.  In my case, it was the best path forward.  Other people are quickly tidied up with a round of steroids.  

But we'll get more into treatment in another post.