Justifying Illness - or why I can't celebrate good days

[brooklyn23]

I'm struggling with something right now.
I was Dx back in 2010 with Crohn's, but never presenting typically. Scopes showed ulcers but most of my pain was linked to ovulation. Eventually I sought a second opinion, seeking out gynecological reasons for my pain. In short, there were none. I was able to abate the worst of my symptoms by taking birth control to stop ovulating, but clearly whatever the underlying mechanism behind the pain has never gone away.

I have returned to the GI and went through the scopes to compare to previous ones. While I show virtually no ulceration and my doctor said inflammation was equivocal at best, I'm still showing symptoms. I'm in pain and I'm constipated, I'm fatigued with occasional joint pain, loose stools are incredibly rare however.

But on my good days, rather than celebrating feeling well, all I can wonder is if maybe I'm not sick. And that thought horrifies me. Because the debilitating pain that comes a few times a year, that makes me lose days off my life... I need a reason for that. I need to know. And if I'm not sick...what does that make me?

 

[InkyStinky]

:ghug:

Last summer there was a CCFA webinar (http://www.ccfa.org/resources/webcasts.html#webcast1) - the doctor presenting said that he fully expects "IBD" to turn out to be 50 to 100 different diseases. So the "Crohn's" "Colitis" "Indeterminate" etc terms sound like they are really umbrellas, or catchalls for tons of different things.

That was supposed to be comforting - hope it wasn't just confusing!!!! Anyway, the point is that you don't have to look like a "typical" IBD patient type. The fact that medical research isn't able to find answers within it's current body of knowledge/ability doesn't mean you aren't sick or it's all in your head or anything. I was dx with Crohn's in 1990 ("the bad old days"!) when half the doctors thought I was just depressed or unhappy about my life or something. And look at all the progress that's been made since then!

Are there any research/teaching hospitals in your area? Wonder if you could find some better help at a "cutting edge" facility.

:ghug:

 

[brooklyn23]

I live in NYC, so I am sure there is something. I guess I'm just afraid of seeking things out? Especially since my worst problem is the debilitating ovulation pain (the day to day pain is more of a nuisance than anything else). I just don't know where to turn since all the gyno stuff was a wash.

 

[buttER]

I know what you mean. I feel like the menstrual cycle/IBD is hanging over my head and I find it hard to celebrate the good days when I know that it's only about 2 weeks until it all starts again. I am always looking anxiously in the calendar hoping that important events don't coincide with those days. Last year it was mybirthday, my brothers wedding and Christmas......

I am looking forward to the menopause!

Sorry I can't help you in how to improve your daily outlook. I do have moments of appreciation, especially when I am outside.