Your Experience with Crohn's

[medellia97]

Hi guys,

I was diagnosed with Crohn's back in 2000 and am doing a research project about people's experience with the disease. I really want to know:

1. What's the worst thing about having Crohn’s?
2. What would help you cope better with your Crohn’s, other than treatment?

Thanks everybody,

Leigh

 

[amor151]

the worst thing about crohns for me personally is probably the tiredness. i use to be a very active person playing sport around 6 times a week and so when crohns hit it was a big shock to have to reduce this amount dramatically. i get so frustrated sitting at home doing nothing, feeling like cr*p and it really gets to me. i miss just going in to the garden and kicking a football (soccerball :S) around for an hour or so as at the minute after about 15 minutes im very tired and need to go inside and rest.

im not really sure about the second one probably better maintained public toilets and more than one cubicle at my school with a door that actually locks!!

 

[Kev]

Leigh

Worst part of this disease? Lack of respect it receives, both in the public eye and in the medical community. You never see a celebrity endorsing a fund raising drive to find a cure. People afflicted are treated with derision, contempt, dis-belief, even scorn. Media rarely plays more than lip service to this disease, despite it's prevalence. And few or no 'members' of a typical community offer any special services to those afflicted. Whether it is a private establishment or a civic site, in Canada there are no special washroom facilities or privileges for those who are oft in desparate need due to their health situation. Would those who are in wheelchairs relish going back to the days when there were no sites set aside for parking, or wheelchair accessible restrooms? Would those who are blind prefer stoplights/crossing lights that are equiped with 'audible alerts' revert back to the era when there were none? Do people with Crohn's NOT merit similar consideration, equitable treatment? The same level of protection?

2 What would help me to cope? Take care of the 'worst' thing about having Crohn's. Educate all of those without it, provide for us with it so that we can try to live as normal a life as possible with this disease, while we are in public. I shouldn't be made to feel ashamed of having this disease, embarrassed by it. I didn't opt to get this illness. I don't think I did anything, or neglected to do... something, anything, whatever.. that caused/resulted in me getting Crohn's. I don't think people with HIV/AIDs should be 'villified' for getting their disease, and I believe anyone, or at least everyone who is either truly intelligent or at least politically correct, would dare try to villify them.. But, for those of us who suffer from Crohn's? All bets are off. We are either dismissed as con artists or shams, or else we are the fodder for inappropriate jokes or insensitive remarks

And no one, absolutely no one, seems to care. After all, Crohn's won't kill you!

 

[Guest]

hi leigh great idea to research this, it may go a long way to helping crohns patients in the future!

my thoughts are:

1) the tiredness, lethargy and apathy i have since my crohns recurred. and the blues

2) i think it would be great if there was an automatic offer of support from the hospital, not just for meds and symptom advice, for emotional support and help coming to terms with crohns etc. sometimes we have fears and worries which dont get a chance to be aired because our hospital appointments are taken up with the medical side of things, and are pushed for time.

 

[cindypat]

The worst thing about the Crohn's is the stomach pains. I have recently been put on (I think the name of it is Bentayl) for the stomach spasms and it has really seemed to help ease them some.

 

[D Bergy]

1. What's the worst thing about having Crohn’s?

Not knowing if another stricture is forming right now. I also feel badly that I have passed this on in different manifestations to my children.

Other than that, I really have no concerns since it is under control as far as i can tell. I have never had much pain associated with Crohn's. I also would like some more energy. While lately it has been pretty good, sometimes i just feel so beat.


2. What would help you cope better with your Crohn’s, other than treatment?

I cope fine with it. I have no problems in this department. But, I am not nearly as affected as many others are.

Dan Bergman

 

[ITSMEAGAIN]

First let me say that i'm glad there is this site, cause i didn't realize the lethargy i've been experiencing is part of the disease.
so for me...
1) The loss of energy.
2) Better support from my family doctor. I felt like i was wasting her time, when i went in to see her (upon her request).

 

[youngheart]

Worse thing about Crohns from the mother of an 8yr old girl who was just diagnosed. Lack of emotional support other than sites such as this one.
Handed a bunch of pamphlets & forms from the hospital and sent home with my daughter to work with the news they had just been given. Thrown into a fish bowl and not knowing how to swim for myself or my daughter.
I don't know if this is applicable for your research project but I felt the need to respond to your question.
Thankyou

 

[jed]

1) worst thing about crohns, wondering when the next bad flare is coming
2) really cant think of an answer for this one.

 

[drew_wymore]

The worst thing?
All the time this disease has stolen from me whether it be from the insane fatigue or because I've been at doctor appointments or hospitalized. It has stolen time that I can never get back.

What would help?
Its already been said, the complete abject disregard for Crohns and autoimmune disorders in general other then MS. We don't have ribbons, bracelets or telethons. We are forced to be embarrassed because we have a disease that none of us asked for and did absolutely nothing to get.

 

[katiesue1506]

Hey drew... I thought I'd let you know that we do have ribbons and bracelets... they are purpleish and say "GOT GUTS?" and I think the CCFA is who sells them. I have a couple bracelets my neighbor bought me in my honor. Of course all proceeds go to research.

 

[drew_wymore]

Thats Katie .. will check out the CCFA site and get a couple =)

 

[My Butt Hurts]

The worst for me has just been the fear of crapping my pants in public, and always trying to stay near a toilet. Feeling exhausted for so long is up there too, but the worst is the urgency to go.