Hi Brandon and everyone--
I sympathize so much with what everyone has been saying, from the lack of understanding from close family members, to the embarrassing and personal nature of this @#$)(*@) disease, to the conflict between wanting to be strong and self-sufficient and needing/wanting people to understand how significantly this affects our lives. I get it all, and I, too, am profoundly thankful for this forum!
It's funny this topic should arise now, when I just duked it out with my husband over this very topic about a week ago. He is one of those frustrating people who seem to be able to do whatever they want and suffer no ill effects. To his credit, he is and always has been *very* physically fit. But he also eats garbage. If he makes a meal, it is something like cheese fried in bacon fat with fried eggs and some white toast on the side with a huge glass of juice or Gatorade, no fruit or veggies in sight. (OK, I exaggerate, but not much.) I, even before this UC business, am MUCH more careful about my eating habits, in part because I have family histories of heart problems to contend with. His cholesterol is fine, his heart is fine, he is just fine (as far as we know). ANYWAY, the other night, he asked why I was so crabby, and I said I was sick to death of feeling sick. To make the longer story short, he said, "Well, I have problems, too. I just don't talk about them." Well, that set off the fireworks for sure. He basically suggested that, since the mind and body are linked, to talk about ailments only makes them worse. This after living with me for the past 2 months when I can't sleep through the night, have seriously reduced my own active lifestyle, etc. We really had a to-do that night. I think people who haven't suffered something chronic and beyond their control just don't get it, period. Some are better at empathizing and listening than others, but some just aren't. (This is the same guy who, when a marathoner at the Twin Cities marathon broke down and cried on the side of the street because her calf was cramping, rushed to her aid and massaged it till she could move on. "Anyone would have done it," he said. So if I was suffering some kind of sport-induced diarrhea, he'd have tons of sympathy.)
Now, I must admit I was in a bit of denial myself when first diagnosed in March. It was a mild case of UC, my GI said, and I had NONE of the typical symptoms. I remember getting the little card that you can present to stores or public venues that authorizes us to use non-public restrooms and -- forgive me! -- kind of laughing about it, saying I'd no idea there was such a secret club out there. Now I need to go find that darn thing. I didn't have any symptoms until this flare that has been going on since August. So if I was in denial, no wonder others were. Deny it no more, however, and I would think my husband couldn't, either. I definitely think finding out you have a chronic illness involves those stages of grieving; it is definitely a loss. I'm just waiting for acceptance and a new normal to set in, and for some of the meds or something to FINALLY work to kick this flare!
Sorry for the rant; my husband is in many other ways a good guy. He just has this particular blind spot that drives me mad!
Diagnosed proctosigmoiditis March 2008
Started 400mg Asacol, 3 pills twice a day
Started current flare mid-August 2008
Now on 400 mg Asacol, 4 pills three time a day
1000mg Canasa bedtime
Mesalamine enema at bedtime