In early 2016, I followed other members of my family in dealing with a quite awful stomach flu. It wasn’t a fun thing, but it passed on as those things do.
Until it didn’t.
See, while the symptoms at first subsided, things got weird not too long after I thought I’d recovered. What do I mean by “weird”? Well, for starters, I worried that I was having appendicitis.
There was a spot in my lower right abdomen that just hurt. It was particularly bad if anyone pressed on it, as happened often when playing with my young children. This started in February. In March, I went to urgent care, who sent me to the ER. An MRI didn’t show anything abnormal, but the pain persisted. I followed up with my family doctor who eventually referred me to a gastroenterologist.
I wound up having a CT scan, gallbladder ultrasound, and, eventually, my first colonoscopy. The colonoscopy sealed the diagnosis. It turned out that my small intestine, particularly the end part where it connects to the large intestine (called the ileum) was really angry. Lots of ulcers and other problematic things. Diagnosis: Crohn’s Disease.
What’s Crohn’s Disease?
Crohn’s Disease is one of the Inflammatory Bower Diseases. Note, it’s
inflammatory bowel disease or IBD, not irritable bowel syndrome, IBS, a completely separate condition.
IBD is Crohn’s Disease, Ulcerative Colitis, or Indeterminate Colitis. In all three diseases, the body’s immune system decides that it doesn’t like a part of it’s own digestive tract. In the case of Crohn’s Disease, this can actually be any part of the tract from the mouth to the anus. The whole shebang is a potential target.
When the body attacks itself, the disease is part of a spectrum of diseases called Autoimmune disorders. You probably know a few of them. Type 1 Diabetes (the body attacks the pancreas), Rheumatoid Arthritis (the body takes personal offense at joints), Psoriasis (the body sics its army on its largest organ, your skin), and Celiac disease (where the body gets particularly ancy when in the presence of gluten, a protein commonly found in wheat and some other grains) are just a few of the common ones. The lead singer of Imagine Dragons has one called Ankylosing spondylitis, where the body decides it doesn’t like the back (well, spine), like, at all.
What does Crohn’s feel like?
Crohn’s presents itself differently for different people. It depends on the part of the digestive tract the body is angry at. It can range from mild but ignorable pain to writhing anguish. Because it’s the digestive tract, other common digestive issues come into play. Crohn’s and other IBD patients wind up spending a lot of their day on the white porcelain throne (the toilet). Diarrhea, bloody tools, and similar symptoms are common.
In really fun parts, those with Crohn’s Disease can see symptoms in lots of other places, too. Skin problems are really, really common. Joint pain is, too. There can be mild or very serious eye complications. Along with mouth ulcers and something called fistulas, painful tunnels the body can create between two parts that aren’t normally connected to each other.
In my case, I’ll get pain in my abdomen where my ileum is located. I have rashes on my skin, particularly on the backs of my hands. I’ll have bloodshot eyes more frequently than others. And I might have to take a lot of long trips to the bathroom.
How do you get over it?
Um, you don’t.
Crohn’s Disease and other autoimmune conditions are lifelong, chronic things. There may be treatments for some of them to help mitigate or bring the symptoms under control. Lifestyle changes (diet, exercise, etc.) may also help.
I take a type of medicine called a biologic. Mine targets a particular immune marker and reduces how actively my body pursues that marker. So, I’m immunosuppressed as a result. Not like someone on chemotherapy or with a transplant or HIV might be. But suppressed nonetheless. Every eight weeks I go get an IV put into the back of my hand and sit in a chair for 2 hours while several thousand dollars worth of medicines infiltrate my veins and keep Crohn’s at bay and my life fairly normal.
Without these meds, I’d be dealing with lots of pain, lots of bathroom trips, and probably a much shorter lifetime in and out of a surgery bay having portions of my small intestine removed as they became too diseased to do their job anymore and actually become an impediment to my health.
The medicine helps stop that, though. And I’m grateful. My doctor considers me to be in deep remission. This means that I don’t experience any symptoms of the disease and that when he checked my intestines during another colonoscopy recently, he did not see any signs of active ulceration and disease. (Just the scarring from the previous times.)
But the medicine is not without risk. I am immunosuppressed. Which means I have a higher than normal risk of getting infections. I had to get several vaccines and vaccine boosters before I started. The medicine makes me even more susceptible to melanomas and other skin cancers than I already was due to my light skin and reddish tinted hair, so I have to be very vigilant about sunscreen and time in the sun. And the medicine also comes with a higher than normal risk for a pretty nasty lymphoma (a kind of cancer). All of these things are constantly in my mind, and something that I discuss with my GI at every appointment (currently every six months).
Crohn’s is known to be a very fickle disease. I’m in deep remission now, but anything can cause the disease to ramp back up and start causing me problems again (this is called a ‘flare’). My body has already learned to fight against a previous biologic medicine I was on, rendering it not effective. There’s a risk it might do the same to this one. Fortunately, research and pharmaceuticals have come up with a pretty robust list of potential treatments against Crohn’s Disease (and other autoimmune conditions).
I consider myself pretty fortunate. While clinically, I had moderate to severe disease at my worst point, my symptoms have stayed relatively mild. I never had surgery. My condition never interrupted my work where I couldn’t go to work. There were certainly life impacts, but not dramatic ones in my view. Other Crohn’s and IBD patients have very different stories and experiences, some much more dramatic. Many fatal.
So Crohn’s is one of my biggest life challenge upgrades I have to face. There are others, to greater and lesser extent, of course. But this is the one I carry with me most front of mind most of the time.
What about you? Everyone faces a challenge of their own in life. It’s just how life works. Maybe yours isn’t a chronic disease, but you have one. Everyone does. But if we share the loads with others by talking about them (maybe not quite as publicly as I am here), it really does help.