Any good storys

[desch]

any good storys

have you ever noticed that when you meet someone and they find out you have crohns they always know someone you has it, or had. it seems all i hear is ''ah my (friend, family member etc) had that they died from it or something related to it'',
today i was round a friends house and she said "i have a article about crohns in this magazine... you should read it" so i sat there and read about a guy with a wife and kids who felt ill for about a month or so, and ended up dying on christmas day, i have to wonder why she thought i would want to read this, then realised i have yet to see on tv or magazine about someone who has found a way to beat this thing,
so if you have a story about somehow surviving or at least putting up a better fight than i seem to be able to, feel free to tell me, could do with a pick me up.

 

[shazamataz]

I totally understand where you are coming from. The majority of the time if I tell someone I have Crohn's, all I get is a rather uncomfortable 'Oh...' followed by something extremely negative about someone who has it really bad. HOWEVER< I have also had some stories/words on a more positive note with people who live pretty normally and such, so they DO exist!

 

[razz]

I'm in remission (still have afew symptoms BUT nothing I can't handle). I take B12 shots for my fatigue and I feel pretty darn good.

My GI pretty much says its a rollercoaster.. but I know I hear of people being in remission for 7-10 years or maybe more? Actually that would be a good thread to start.

Anyways....I think alot of the ones who end up having quite a mild cases can treat their symptoms and they go off and have normal lives that are not likely of your friends even knowing their 'story' you know what I mean?

I just hang around the forum, because I remember what it was like and I like to know I have somewhere to go if I do have a question.

 

[imisspopcorn]

I think most people only hear about the really severe cases...I know I usually don't share my disease with acquaintances, only close friends and family....It seems the people who are doing really good with their Crohn's/ UC are the athletes for the Remicade commercials. I would really like to know how they are on a day to day basis. Those drug commercials are so misleading, 'take this miracle drug'...blah, blah. I've had family ask why I just don't take what so and so takes so i will get better.....

 

[Fog Ducker]

I used to be real ashamed and embarased to tell people about my CD, but lately I have been more free with who I tell, yeah some tell me about the horror stories but I have had some tell me some good things and even introduce me to the person they know, and talk and share experiences. Its really good talking to people who have been through it, thats the basis of this forum.
Its human nature to only talk about the bad, when do you hear about what a great job youve done, but when you do a chitty one....

 

[mwb3779]

I have an interesting story. I spoke with someone who used to work for me a couple years ago when I was working like a mad man and was always gogogogogogogogogo. Well he found out from someone else that I went into the hospital. Somehow it got to him I had a tumor of some kind. He thought I had cancer! I told him I had been diagnosed with Crohn's. He said "I'm so sorry, that's pretty bad isn't it?" I said to him "Well its not the best time. It can have its good days and bad." He said that sucks, if I had a tumor at least then I can have it cut out. That got me thinking. Why would I ever want cancer? I just think so many people have no real idea about what Crohn's is. All they know is that someone they know has or had it and it was really bad. I wish there was more spoken about it. Whether it was online, tv, or books/ magazines.

On a good note. My cousin has had Crohn's for 10 plus years. She's been in remission for the last 3 years. She said the best thing to ever happen to her was getting pregnant. Well, I can't do that... But she is able to eat pretty much whatever she wants now. She has been a blessing in my life. She has been someone I know personally that knows and understands what I'm going thru.

 

[CrohnieCarolyn]

I handed a teacher my disability paperwork in case I get sick and miss some classes I told her I had Crohns. She said "Oh I had a friend that had that and he died" Nice huh? Do I need to hear that?

 

[Guest1]

I remember the first time I had ever heard of Crohn's. Some friends and I (10-ish years ago) were talking about an old neighborhood kid and I remember my friend saying that he had severe Crohn's and wasn't going to make it. I had no idea what Crohn's was, but had it instilled in my head that it was a death sentence. Several months ago, I ended up getting in touch with his sister and while he IS in bad shape, he's still kicking. He's about 32 now? He's too sick to live on his own or work, he's had I can't even count how many bowel resections, abscesses drained, etc. and he's on disability. I saw a picture of him and was shocked at how he physically looked. I say this with no offense, but with his frail frame, colorless skin and dark bags under his eyes, he resembles an AIDS or cancer patient. It's really hard to look at those pictures of him and see someone unrecognizable that I grew up with.

 

[Guest]

i think it's true that the stories which hit the gossip headlines regarding Crohn's are always going to be those with extreme outcomes, either a 'miracle cure' or a tragedy. fortunately, i think that most of us with Crohn's carry on with our lives and find ways of coping as each hurdle comes up, with the help of diet, medication and/or surgery.

i would imagine that the Crohn's related deaths we do hear about are more to do with complications than Crohn's itself. i nearly died in ICU, but it was because of post-surgical problems.

back in my teens, around the time my Crohn's was really bad and i hadn't yet been diagnosed, i knew of a guy locally who'd had so many operations for Crohn's he virtually had no colon or ileum left... but he managed well, was fed by a feed line, got married, had kids, and as far as i know, is still around. i also know one lady who has 'dumping syndrome', has had most of her stomach removed, and also is fed by line.... and is ok.

these are extreme cases, i know, but it just shows how much our bodies can adjust... and how life can go on despite severe illness and surgery.

 

[merrywidow]

you want a good story with crohns?
i did a firewalk 3 hallowens ago, the picture is on here somewhere. if i cant find it i will post it here again.

i did this to raise money for a local hospice that help me my husband and myself, when we desperatlty needed it.
we have alo swum with the dolphins in florida.

 

[merrywidow]

i found it. it wass fancy dress!!!

 

[razz]

Thats such a cool picture...I hope you weren't walking on fire because your pain tolerence is now so high!! :eek2: :lol:

 

[crazycanuck]

When I was first diagnosed I was playing pretty high level hockey and was very nervous telling my coaches but I knew they had to know. When I told my coach who I though was hard a$% he took me for a walk right before our game and said how are you doing? and I said ok i guess a little worried and he told me not to worry his dad is 95 and has had Crohn's since he was 20 and hes doing just fine. At practice he brought me in a newspaper article about a univeristy student from Ohio State's hockey team who lost 40 lbs. to Crohn's and is now leading his team in scoring. It was very cool to hear and his concern for me and askign how I was doing regularly was very refreshing and it was so nice to have him understand what was happening.

 

[Peggy]

We had not heard of CD until my Hubby was diagnosed some 25 years ago. After that it seemed that everyone with a poorly tummy had CD. Then I was told I also had this nastything. Life can be very cruel sometimes. Peggy

 

[HealthyforYears]

I have a good story for you (worth the read)

I was finally diagnosed in 1995, after being misdiagnosed for 3 years by 8 different doctors. After 1 surgery in 1996 and a year of awful medications I was finally put on Imuran (150mg). I couldn't eat anything green at all, no salads...nothing. Other than that, I was pretty healthy until about 2002. Doctors couldn't really pin point what was causing my issues, so I went to a naturopath. He put me on a really strict diet that related to my blood group (AB+). He told me to stick to it super, super strict for 6 weeks, then to start eating broccoli and other greens. I explained to him that I hadn't eaten ruffage for 7 years and that I was scared to (because I'd wind up in the toilet 10 minutes later). He said that broccoli contained "vitamin U' which is excellent for the colon. He told me to try a little bit, since my system was now "cleaned out". It changed my life! I've been eating broccoli, salads and other greens with no issues since then and I'm 100% healthy. I've been in complete remission now over 7 1/2 years. I don't stick to the diet 100% anymore, because I managed to pin point the foods that hurt me and I avoid them. I avoid coffee, chicken, processed corn, a lot of cow dairy and a few other things.

Other than being in complete remission, here's the best part of the story! When I went to my GI in 2002 he gave me tons of new prescriptions (even though he couldn't pin point the root). At that time, my poor little bum was so flared up that they couldn't even do a colonoscopy! I hobbled to the naturopath, who put me on the diet and told me NOT to take the new medications. i never took 1 pill (other than my regular imuran). 6 weeks later I went to my GI for a colonoscopy and he told me there was NO sign of Crohn's in my system! He even asked me to turn around and look at the screen to see how good my colon looked! In my valuim induced state I proceeded to tell him it was the diet. He looked at me, laughed and said, "No sweety, it's the medication". To which I responded with, "No doctor, it's the diet. Open my purse an you'll find the 4 pull prescription bottles". He was dumbfounded, shook his head in disbelief and said "I wish all my patients were as healthy as you!"