Hope for a normal life???

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littlelefty
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/29/2008 10:39 PM (GMT -7)   
Im new to this site, and somewhat new to ibs. My question to all of you..... How do you go to school, have relationships, talk to people about ibs/explain whats wrong with you???????? All the websites i have visited say 20% of americans suffer from ibs, if so many people suffer from it, why is it that no one understands it???

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 8/29/2008 11:07 PM (GMT -7)   
So sorry that you have IBS. When you say understand do you mean "make it better". The reason is that it is really not a disease but a syndrome of symptoms and they are different for everyone. Some have diahrea, some are constipated, some go between the two. Some don't have either but just have the intestinal part so it just isn't a one size fits all problem. Sure wish it was. Frankly, in my opinion it is probably overdiagnosed when often it is a temporary problem caused by perhaps an food allergy, too much of the wrong food or something like that. Since they can't find a physical problem with the person they say it is IBS and when you think of it Irritable Bowel syndrome can cover a lot of things.

crampygrammy
Regular Member


Date Joined Aug 2008
Total Posts : 85
   Posted 8/30/2008 4:41 AM (GMT -7)   
littlelefty said...
How do you go to school, have relationships, talk to people about ibs/explain whats wrong with you????????
Those who care about you will understand and be supportive. The rest don't really matter anyway do they? Sometimes it's hard getting through a day for an IBS sufferer but millions of us do. Sorry you have to live with this but you are not alone.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 8/30/2008 6:28 AM (GMT -7)   
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.

WRONG!

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......
Mary/Marsky

Post Edited (Marsky) : 8/30/2008 7:31:45 AM (GMT-6)


7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 8/30/2008 10:51 AM (GMT -7)   
 
Please donate to help HW continue to help us... http://www.healingwell.com/donate/
 


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 8/30/2008 12:45 PM (GMT -7)   
Lil - thanks for that link. It actually made me cry!

Now, I'd love to email it to a few people (my immediate family mostly). But they'd take as I'm asking for more attention.....I'm going to bookmark it and keep it for a while. I could always whip it out before the holiday season (because this is when my gut can really act up! No wonder, we're all so busy that time of the year.....).
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