Last week I was off sick for the day, sleeping 24 hours and still not feeling up to par. I fear I’m on the verge of a flare-up. And I don’t mean fireworks, fires, or torrid love affairs; I mean Crohn’s disease. I’ve had it for over 30 years and have been in fair remission for several years. Uh oh.
Crohn’s disease is an auto-immune disorder that causes damage to the digestive system; it falls under the umbrella of inflammatory bowel diseases. Basically it causes inflammation to the lining of your digestive tract and often results in diarrhea, among other things. The cause is unknown, but is thought to be a combination of genetics, environmental issues, and an abnormal auto-immune response. (The doctor that diagnosed me called me a mutant since no one in my family had it; loved this doctor for his off-the-wall humor).
And because it is an auto-immune disorder, it may be paired with other auto-immune disorders, such as Ankylosing Spondylitis (AS, a form of arthritis, which I also have) which mostly affects the spinal joints. Episodes of iritis (inflammation of the iris) can also occur.
My history with Crohn’s and AS goes back to my mid-20s. The AS was diagnosed during a time when I was having trouble walking due to intense lower spinal pain. After finally getting a handle on the chronic pain, things were looking better. I had learned a type of bio-feedback where I could “see” myself on a summer day, at the beach, and I would be warm and toasty. This tended to open up my blood vessels for better circulation, and the pain (especially in my hands) would ease up a bit. Basically, I just got used to chronic pain. Deep breaths are often the only way people can now tell when the pain gets too bad.
Then came the Crohn’s diagnosis. Continual abdominal cramping, diarrhea, and loss of appetite. And the diagnosis involved a colonoscopy (kind of like a camera up the butt) among lots of related tests to rule out other issues. Medicine to attempt to control the inflammation did the trick, along with diet changes. Or so I thought.
A few years after my diagnosis, I moved to Florida. Things seemed to go well, but then everything started going crazy with my auto-immune system. I started have trouble walking again and would keep canes in the car, at home, and at work. I would be OK one minute, almost frozen in pain the next minute, and then be OK a few minutes after that. Then the Crohn’s took a giant leap and really started in on me. I ended up having emergency surgery twice because of severe inflammation. The Crohn’s had eaten away though part of my intestines and created little tunnels to the outside of my body. Fistulas, what a lovely word. The surgery was to drain the pockets of infection, and insert mushroom catheters (they look like they sound) to keep the inflammation draining until it was over. Gross, huh? YES IT WAS!
Then came the iritis. Inflammation of the iris of the eye that is so painful, especially to any light. I would lay in a dark room with a dark washcloth over my eyes, and it still wasn’t dark enough. I had to put drops and a gell-like substance in my eye every hour. Try getting any sleep with that regime. I felt like a pirate; a patch on my eye and limping with a cane.
At one point I was pregnant, but had severe iritis and other nasty symptoms which required several months of Prednisone medication. Some concern by everyone (including doctors) about taking corticosteroids while pregnant. Due to these concerns, I had amniocentesis done. I had low folic acid and there was potential for spinal bifida, and because of my AMA (advanced maternal age of 39), Down’s Syndrome. Thankfully, everything checked out OK. I had to have a caesarean though due to previous fistulas, and my daughter was born earlier and small (5 lbs, 10 oz.). Again, all turned out well though.
I soon moved out of Florida and all seemed well; arthritis and Crohn’s seemed to be in remission. Could it have been the weather? Hot and humid vs. cold and dry? And then I started having little flare-ups. But they would come and go, so I didn’t pay a lot of attention to them. After about 18 months of these little flare-ups getting closer together, there was a diagnosis of a blockage in my intestines. And major surgery was required. Doctors removed 7 inches of my colon. I spent 7 days in the hospital trying to recuperate. Does that correlate to 1 day per inch? I was extremely nauseous, although everyone told me I can’t be because I had a nasogastric tube and there was nothing in my stomach to make it so upset. Nothing makes me angrier than someone telling me I am not nauseous when I tell them I am. To fix them, I usually just puke on their shoes, but this time I couldn’t, so I just vomited all over the bed (and myself too). That took care of those naysayers. Bad move to vomit on myself though. The doctor came in and said, “oh, your gastro tube is in too deep.” He then just grabbed it and pulled it out about 3 inches. OMG – the shock and quick pain, much like when you get water up your nose. And then after a few minutes, the nausea disappeared! I went home 2 days later.
The surgery was a calculated risk. Crohn’s people don’t like surgery because it just fixes the current symptom; the disease is always still there. And statistically, once you have big surgery, there is a very high percentage (use to be 70-75%) of having to have surgery again within a couple of years. Apparently, Crohn’s gets pissed if you tinker with it, and to prove who’s boss, comes back with a vengeance.
It has been 12 years since my big surgery and I have been in fairly good remission. My arthritis has been bad, requiring cortisone shots in various joints, but that is settling down a bit now. And apparently just in time, because I feel like a flare-up is in the works. And I feel shitty (pun intended).