When I tell people I have Crohn’s Disease, the first question is usually “what is it?” The second questions is “That’s really painful, isn’t it?”
It is. It sucks to have to say that but, damn it, it hurts!
Now, I should say first that I’m very fortunate. My Crohn’s is well-managed through lifestyle and diet and any IBS is practically non-existent. That’s part of the reason that it took me about 10 years to get diagnosed. Due to misdiagnoses (or doctors that thought I was faking) I spent 10 years basically just dealing with the symptoms and the pain on my own. Occasionally, doctors would give me painkillers, but more often than not I piecemeal together my own personal way of dealing with it. (It usually involves rolling myself in a ball and existing on smoothies.)
After diagnosis, I’ve gotten even worse for self-treating. Sure, I could go to a doctor every time I have a flare up, but all there going to do is tell me I’m having a flare up (which I’ve already figured out) and give me drugs. They’ll probably tell me to watch my diet and try to eliminate any stress in my life, but I’ll already be doing that. So, why bother? I mean, except for the drugs, all it’s doing is wasting money and a doctor’s time. I’m NOT saying this is the best way to handle things…it just the way I do it, right or wrong.
Part of it is quite definitely pride. I don’t want people to think of me as being sick and 90% of the time, I keep my Crohn’s very well controlled. But, my current flare up has my fella asking some very specific questions about what exactly it FEELS like. So, I’ve been racking my brain trying to think of how to explain it, without making it seem overtly dramatic…or make me sound like some sort of brave martyr (which I am, most definitely, not! *lol)
So, here’s my view on it: When I’m having an attack, it feels like I’ve swallowed broken glass and it’s slowly working its way through my system. Those wire brushes you use to brush off metal? Yeah, one of those getting dragged through your intestines, usually in waves. Awesome. It’s intense, but also achey and throbbing. You’re exhausted. Most times you lose your appetite, but not always. A lot of the time it’s accompanied by nausea, but it doesn’t have to be. Your bathroom habits become…erratic. (Let’s just leave it at that.)
It also affects your weight. Usually, you lose weight and you lose it fast. At my worst I dropped down to 98 pounds. Once they put me on steroids and medication I gained weight fast and ballooned up to 190 pounds. The crazy part is that 90lbs of weight gain happened over 9 months..AND, superficially enough, my weight is probably what bothers me more than even the pain and other physical symptoms! I am nothing if not, slightly, vain 😉
So, that’s my take on it. It seems to affect everyone a little bit differently. I have friends that have had massive sections of intestine or bowel removed. I have friends that have to get bi-weekly shots whose side effects are almost as bad as the disease itself. I know people with colostomy bags. I’ve heard of people that have died. All from Crohn’s Disease. I am so fortunate to not have any of those things happen to me.
But there are days when I’m tired and when I hurt that I start to feel a little sorry for myself. So, I’m just going to cuddle up with my girl, Blue, and get over myself!