I've been at this for 9 long years. At first I felt compelled to educate others. I was responsible for getting 8 or 9 people to schedule colonocopies (I'm a colorectal cancer survivor). Some were in their 40s, thinking they had lots of time before they had to worry. But if they had a close relative with colon cancer or polyps, they started asking their doctors if they should get one or not. I had many people thank me for that gentle reminder. In fact when someone would tell me they were 50 now, I would quietly pull them aside and remind them - you know, you need to get a colonoscopy now, don't you? If they scoffed at my suggestion, I would tell them all that I went thru at age 43. They usually listened to me.
Fast forward to 9 years later, and I don't even bother telling anyone what I experience 24/7.
They all look at me think I am back to normal, that I poop once a day like they do and can eat anything I want again.
If they seem surprised I need a bathroom this much, I just explain that I've lost a vital part of my colon and I will never be the way I was before. I explain as simply as I can - I need to eat small portions, plain food and know where a bathroom is.
And then I launch into - get a colonoscopy - if they're 50 or older. LOL
But you are correct, most people with normal colons will never, ever understand what we go thru. Sometimes I feel compelled to ask them if they've ever had mild food poisoning, or an intestinal bug (who hasn't had one?). They of course nod their heads yes, I then say, well that is how I feel, most of the time. Then the light bulb comes on.
As for work, social functions, etc. it's a fine line I personally walk. I am lucky, I work part time. If I had to work full time, I swear but I don't know how I'd do it. I would have to severely pull back on eating. I have had said no to many social functions, though. Not formal, invite types but spur of the moment invites. I have a busy in-law family and I have said no to invites if they fall on the third day or so of being out and active. I cannot have 2 or 3 days in a row of run-run-run (not D, but always on the go). I tell people I have appointments (if during the day), or conflicts, or other plans. Even if those plans mean sitting on my couch, with TV remote in hand and my dog curled up next to me. Yes, I've come a long way in 9 years, in protecting what I know works for my situation - the low residue diet, the less busy schedule, the quiet/down time that I seem to need now. I don't feel guilty if someone thinks I've retreated from the world. It's usually the pushy relatives who have a chock-full social calendar, that think I should do more with my time. I've been known to say - because you choose to live your life this way, you think I should choose to live my life YOUR way? No thanks......and then I walk away, saying I need to use the bathroom (hey, I can always use the bathroom! LOL).
What I am trying to say in a wordy way, sorry, is that once you figure out that others will not understand what we go thru, what usually gets thru to them is OUR attitude towards IBS. If I treat my situation with a positive, eh, this is what I have to do now, they leave me be. If I cry about
it, they want to find solutions for me (as if I haven't even tried on my own to figure all of this out....yeah right!).
I usually just smile and evade looks and questions. Because it doesn't seem to help if I even try and enlighten the normal colon people. They mean well but their questions, looks and reactions sometimes make things worse for me, that's why I don't even bother trying to explain any of this anymore.....
That's my 2 cents on the matter......
Post Edited (Marsky) : 8/30/2008 7:31:45 AM (GMT-6)