Thursday, May 19, 2016

World IBD Day and Reality


I jacked this picture off of Instagram to post on here because today is World IBD Day! This meme states what the biggest problem with knowledge about IBD is - people generally think it's just a pooping problem.  Even I, a seasoned Crohnie, used to think that my biggest problem was diarrhea but really it isn't.  It's one of the biggest problems I have, yes, however it is only one of an all encompassing disease that has me constantly rerouting my life.  Fatigue, nausea, insomnia, cramps, bloating, bleeding, hemorrhoids, anxiety, eye problems, skin, hair and nail problems, nutritional deficiencies, back pain, joint pain, pretty much constant pain somewhere in my body, the list of problems associated with having IBD is endless.  I hate it.  I hate everything about it.  But it is who I am.  I am a what a person with IBD is.  I'm what they look like.  I'm what they feel like.  I am Crohn's Disease.

The saying goes - "I have Crohn's Disease but it doesn't have me".  Well, that's bullshit.  It does have me.  I live with it every day.  I have had to change my whole life because of it.  I had to quit working because of it.  I'm on disability because of it.  I am constantly trying to find relief in all kinds of ways from the problems associated with it.  My daughter has been effected by it, as has my husband.  My life is different because of Crohn's Disease.  My body is not the same - inside or out.  My whole being is changed forever because of Crohn's Disease.  It will never go back, it will forever be broken and damaged because of surgeries and drugs and disease.  I have been able to carve a life out around the illness.  I am quite happy with my life by and large - outside of being sick.  But Crohn's Disease does have me.  It always will have me in it's clutches slowly, quietly destroying my insides.  Waiting to cause a full blown attack, to destroy what happiness I have found in life.  But it's really just a matter of perspective, right?  Don't think about it too much.  Don't focus on it too much.  Concentrate on other things.  Work around it.  Plan around the unplannable.  Do what you can.  Get by.  Be positive.  That's also a huge part of living with IBD.  People generally don't understand how difficult that is to do day in and day out either. 

Let's all try to be like Tim's loved ones and understand that having IBD is much more that just pooping a lot.  Let's remember how devastating having a chronic illness is on a person in all aspects of their life.  Even if it isn't something visible.  Keeping IBD in the bathroom is the worst thing we can do.  Because honestly, all of the problems associated with IBD spill out into every other room of the house and I don't just mean the smell.


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