I heard it again. As I sat in the waiting room of the nearby Medical Emergency Clinic following my latest Crohns attack and subsequent twisted bowel, I was greeted by an acquaintance who asked "What you here for?
I explained to him that I have Crohns disease and last night had experienced an especially severe attack that left me dehydrated and in a lot of pain. I suspected I might either have a partial blockage or a twisted bowel and was waiting for x-rays to confirm,
As he wiped sniffles from his nose and sneezed into sleeve numerous times, he looked me over and said, " You sure don't look sick".
Like many other Crohns sufferers I have become accustomed to hearing that comment so I searched for an answer that might even contain a little sarcasm to answer this comment so often made.
I suppose it is nice to be told you don't look sick but at times it does become a little bit, no a whole lot annoying.
You see Crohns is an internal disease. You can look me up and down over and over and you won't see any visible signs. I'm not emancipated; in fact I am probably a few pounds over weight. My hair isn't falling out and really there are no apparent visible signs that I have this horrid disease. I suppose I could have lifted my shirt and show him a large ugly scar across my abdomen running both horizontally and vertically. The scar a visible, to me at least, reminder of a bowel resection done in 1998. But instead I repeated again to all who ask, Crohns is an internal disease, not visible to others, but nerveless an awful, painful disease having many consequences.
He then asked if Crohns is the disease that makes you crap a lot. Yes, it is. It is that and a whole lot more. But the frequent bathroom trips again are only a small part of the story of Crohns Disease. In addition to the frequent diarrhea Crohns Disease results in
2) Severe stomach pain and cramps
3) fevers and sweating
4) loss of appetite - food often becomes the enemy
5) night time heavy sweating
6) the constant feeling of a full bowel even though you know you just went
7) weight loss
8) serious bleeding
9) in some cases constipation
10) the dreaded ring of fire.
Now if you don't know what the dreaded ring of fire is, you are lucky. You probably don't have Crohns Disease. As Johnny Cash sang I went down, down in the ring of fire. That's what it feels like to a Crohns patient. You have so many bowel movements in such a short period of time that the toilet paper literally rubs you raw and leaves you with excruciating pain. Then one annoints thyself with Vaseline or some other soothing ointment to get rid of the burn. And let me tell you putting ointment on your finger and applying it to THAT part of the anatomy is not fun.
Maybe we as Crohns Disease sufferers are part of the problem allowing people to think; well it's not serious. It's just a pooping disease. But the pooping part is only a symptom or a side effect of the Crohns Disease. It's not the disease.
What Crohns is is inflamatory bowel disease. You may have heard of it referred to as IBS. The inflamation can occur in any part of the bowel. Crohns Disease is a chronic condition, which really means you are going to have it for a long time….like forever. It cannot be cured and it will not go away. Yes you can have surgery. You can have the inflamed parts of the bowel removed but often, as in my case, the disease returns. Despite the Doctor's confidence of " I got it all" somehow it came back.
Again there is no cure and it is not going to go away. You can go into periods of remission where you are free from the symptoms although in my case even in remission times I never experience a truly normal bowel movement. And lurking around the corner is food. Something I might eat that triggers another nasty attack. And the funny thing is, I can eat something one day, no problem. Eat it again some other time and a nasty attack of Crohns takes place.
So yes I may not look sick to you, it is a pooping disease and it is an awful disease with dreaded consequences including death and dying. Trust me I am sick. Trust me it is something I would never wish on another human being to go through.
As the nurse called out my name to go for my X-ray, I asked my acquaintance friend, " so what are you here for. Got a cold he said. Going to ask Doc for some anti by's. Oh how I wish I were at the clinic for a cold instead of another round of pushing, poking and prodding as they try to get this twisted bowel to go back to where it is supposed to be without having to go into surgery.
Here's something else you probably didn't know
Canadians have more reasons to be concerned about Crohn’s disease and ulcerative colitis than anyone else in the world.
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