What is your No.1 problem?

[AmandaC]

Hi,

I run a business that supports people living with Crohn's Disease. I'm doing some market research and am looking for your HELP!

What is the No.1 problem you face everyday living with Crohn's Disease/Ulcerative Colitis?

With this information I will be able to better support my clients by offering them exactly what they need.

In advance, thanks for helping me and the many people out there living with Crohn's.

I will get the ball rolling...............
My biggest problem living with Crohn's Disease is that I can never plan too far ahead into the future as there are alot of unknowns. I never know when another flare is going to happen.

I'm looking forward to hearing what other people have to say!!

Thanks,
Amanda

 

[Nyx]

Having a stoma, my biggest problem is taking tests at school and worrying that Oscar is going to make his presence known! So far, I've been lucky and he's kept quiet (even during the 2 hour exam I had today), but it's always an unknown.

Probably not the worst thing to worry about, but it's foremost in my mind these days.

 

[Scifimom]

The two Ds Diet and Diarrhea I have so many restrictions in my diet I acnnot even go out with friends for dinner any more. And diarrhea, if I want to go to the theatre I eat nothing at least two hours before the show, if I do The whole line I am sitting in will have to stand up to let me go to tha bathroom and then stand up to let me go in again and I lose half of the movie anyway.

 

[Jennifer]

I think this is one of the most important things that people with a chronic illness need help with:

My biggest problem living with Crohn's disease is that I'll never be normal again and I feel so alone.

Depression, panic and anxiety are MAJOR issues associated with people who suffer from Crohn's disease.

 

[Rebecca85]

I second Crabby's post

 

[Cat-a-Tonic]

I third Crabby's post.

 

[Liverpool FC]

That many don't understand it isn't just a dodgy stomach that will go after 24hrs!

Seriously though I'd say the pain and the tiredness of which there seems to be no escape!! Oh yeah and the inability to put weight on.

You said number 1 problem... well i suppose i'll say tiredness then (probably cause that is the worst presently)

 

[bushydougie]

Mine is definitely the fatigue and thus not being able to do anything most of the time. Everything is such an effort...
This is what frustrates me the most and means I see a lot less of my friends

 

[reidyjo81]

bloody diarreha !!! Hate it

 

[Welsh-bird]

For me it's the uncertainty of not knowing when I'm going to need the loo, and then when I do, I just have to run for my life! Closely followed by the fatigue.
Andrea

 

[Astra]

For me it's joint pain, then D, then fatigue, then styes, in that order!

 

[MapleLeafGirl]

Fatigue, diet and uncertainty.

Fatigue is self explanatory.

Diet - As mentioned earlier, it so so hard to go out and eat or even to go to lunch meetings at work. I am so tired of looking like I'm just being picky when in reality - eating one wrong thing means a week of hell for me.

Uncertainty - Again as mentioned earlier, you just never know how you're going to feel on a given date. I hate committing to things and then cancelling. My husband wants to go on a trip but I am so scared to plan one.

 

[Jer's Girl]

I think keeping a Job is the number one concern for me.

Pain and bathroom urgency are right up there too.

 

[Domsmom]

For me my first concern is how I'm going to be a good mom and wife when I feel so rotten.

 

[MADiMarc]

Feeling anxious all the time not knowing if I am going to have to dash to the restroom or if I will even be able to make it in time to the restroom. I used to love to travel. Now that is something I dread. I hate getting on the airplane to take a 4 hour trip to visit my family on the east coast because I never know if we will hit turbulance (spelling?) and need to stay in our seats. That is of course when I MUST go to the bathroom. And the worst part is that most of the time, I am worrying about it and that just makes it worse!

So...short answer for me...anxiety.

Michele
Diagnosed 1985

Current Meds:
None because they have all lost effectiveness and just make me sicker!!

 

[acg101]

bathroom runs, fear of not making it in time, not making it in time, stoma blowouts, severe pain, side effects of medications.

 

[Squadinho]

I've only been diagnosed for a few months, but for me its the never knowing if/when I need to go to the toilet. Its not so bad for me at the moment because the my medication seems to be stabalizing things, but you just never know.

And, as others have said. A lot of my friends don't seem to understand what it is and how serious it can be. They just see it as a bout of diarrhea but it is so much more than that.

 

[Pirate]

All of the above plus, worrying about work and insurance to help cover the costs of my meds. How do I continue my Remi treatments if I were to get laid off. This causes stress enough to cause things to start flaring.
I cannot pin point it down to 1 specific thing because it is a combination of every thing we deal with every day.

 

[effdee]

What Crabby said, for sure. My most recent flare up has been hardest in those aspects.

Aside from that, a big concern is not really knowing when I'll need to use the bathroom (or when any of the symptoms might crop up).

 

[can1991]

All of the above plus, worrying about work and insurance to help cover the costs of my meds. How do I continue my Remi treatments if I were to get laid off. This causes stress enough to cause things to start flaring.

That is exactly what worries me also. I am on weekly Humira injection and could not afford them without my health insurance through work.

 

[Entchen]

I was working on this one for a few days and couldn't come up with my #1 concern until I saw the posts about affording meds, and that reminded me: I'm afraid of losing my home. I no longer have permanent employment, because both of my past two "permanent" positions were at places that closed down (who knew an entire university could shut down?!). If I am sick and unable to work, I'll have no protection for keeping my home, other than saving as much as possible during the times that I have employment, which I'm trying hard to do. I opted to be unemployed this past summer because I was so sick, and it was a huge help, but I did use up my existing savings and am starting from scratch this year. At the moment, I have work until the end of April.

 

[Rossy]

For me its got to be the joint/bone pain, its very unpredictable and very debilitating at times.

Oh yeah, try telling that to folk that you're a cripple due to your stomach:eek2: they look at you as if you've lost yer mind:lol:

 

[nomad]

at the moment: the seton that was inserted 1 month ago... painful and embarrassing.

long-term: the prospect of becoming incapacitated; the possibility of having to wear a permanent pouch.

 

[ameslouise]

Fatigue, diet and uncertainty.

Fatigue is self explanatory.

Diet - As mentioned earlier, it so so hard to go out and eat or even to go to lunch meetings at work. I am so tired of looking like I'm just being picky when in reality - eating one wrong thing means a week of hell for me.

Uncertainty - Again as mentioned earlier, you just never know how you're going to feel on a given date. I hate committing to things and then cancelling. My husband wants to go on a trip but I am so scared to plan one.

Ditto all.

 

[mario]

I am welll compared to some members but oh so tired!!!

 

[Pirate]

Well my #1 concern today is also the joint pain. Man I ache. Between just having my Remicade treatment last week and all the rainy weather we have had, my joints are literally killing me.
I'm sure tomorrow it will be something else.