Wednesday, 5 January 2011

Plea to the silent majority of you - anonymity preserved

For those of you who like to be private and send me messages rather than write on my wall or discussion topics (I know there are well over 100 of you), here is an opportunity to be vocal anonymously and your views be seen by others. 

Please add your comments - you don't need to add your identity unless you want to, or you can make up a ncikname. Here is the first of my topics  - a request for help with my research:
Please tell me: 
How you would live your life differently if you didn't have Crohn's / Colitis? Please comment anonymously below!!

Alternatively you may go to my Crohn's help discussion page where there are more topics for you to review and comment on if you wish: Link to FACEBOOK Discussions topics page
Thank you very much - I really appreciate your help!
Joyx

13 comments:

  1. I am a teenager and so is my sister I am constantly jealous of her that she can go out whenever she likes and for however long she wants to, if I didn't have Crohn's I would feel like a proper teenager and be able to do things like go to concerts, go shopping, maybe even get a job and so much better in my school work.

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  2. Can I ask you to be more specific about what stops you from doing what you want to do? Thsi might sound obvious but the details are the important differences - write as much as you like. e.g. one guy wouldn't go out because he feared not being near a toilet, even thoough he hadn't had an episode in over a year. - Thank you so much for your contribution - I really appreciate it!! - Joyx

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  3. I would eat WHATEVER I wanted. Not that I would over indulge, but having Crohns, I tend to eat only the foods I know work for me and when sommething new comes my way I tend to pass because the first thought I get is...how is this going to effect my stomach. It takes all the joy out of eating. It makes eating more of a chore than something to enjoy.

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  4. I seem to have a mild case but wearing certain things, being a bit more active would be things I would be able to do without Crohn's.

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  5. I starting having IBD problems in the late '60's during my teen years and was finally DXed with UC in the early 70's. That diagnosis was changed to Crohn's in 1986 after my first of 10 intestinal surgeries (so far) and 14 surgeries total.
    With the exception of having so many hospital stays, having to take so much time off work, and finally being forced to take a disability retirement at the age of 50.
    I didn't let the disease rule my life and remained almost as active as I every was so
    I'm not sure my life would have been all that different.
    I know the crohn's did effect the outcome of several job interviews for promotions but I didn't let it keep me from doing anything I wanted to do, and with the exception of pain from arthritis I STILL do not let the disease keep me from doing the things I want to do.
    sometimes i do have problems with the ostomy, but after dealing with that for almost 25 years now I well aware how to handle any situation that may crop up.
    http://chronnieschat.yuku.com/directory

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  6. Thanks for your perseverence ttomkat! I do appreciate it. And thank you also for your very fullsome answer. It's really inspiring to hear how you have the confidence and the courage to push the envelope!

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  7. My life would be so different if i could stop being sick, stop the pain, i could go out more have a life, stop people judging me because i have a stoma, i would be able to have sex normally, eat what i want when i want!

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  8. Hello, im not anonymous(Technical hitch) my name is Rob and im 27.

    If i didnt have UC i would go out to Night Clubs and enjoy my life more. The problem i find is that, the toilet facilties in the local bars etc are extremely limited: Often 1 Cubicle, 3 Urinals = Not good enough!

    I also HATE explaining my condition to somebody new and it puts me off relationships unless i am in remision. Is there an easy way of telling someone you may get caught short??

    I also hate having other people in my car... Just incase.....

    All the best people.

    Rob x

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  9. To be honest, I wouldn't live life any differently. You adapt to the crohns and admit defeat when it restricts you and your body can physically do no more. That doesn't mean that I don't try and push myself, it just means that I know when my body has had too much. Without the Crohns I would do exactly the same, but my body may just allow me to do a little more.
    You have to adapt and embrace the crohns, as awful as it sounds to some. But until a Cure is found, unfortunately, it's going nowhere.

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  10. I'd laugh more if i did not have the Gerd, IBS, and LS that i have. I am 64+ now and been dealing w/ each of these diseases for yrs now.
    I have had Colitis since puberty. I thought i had it under control in my 30's but then lost my husband @ 39 and the trauma did me in again.
    Then since my mid-40's i have had Vulva Lichen Sclerosus, another Auto Immune Disease that i can only control w/ topical corticosteroid.
    And now feeling my Colitis has become Crohn's i am more depressed as i have diarrhea frequently and need a bathroom RIGHT THEN.
    My Mom has Crohn's and had Colitis before that, so i guess it is part of my heredity that i have same?
    I also would go more places if i did not have the frequent stomach pain and diarrhea like i do, as now i have become a hermit.

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I would be delighted to hear from you.