Intro to my life with Crohn’s
August 23rd, 2008 Posted in Videos
This is the “getting to know you” video about me and my life with crohn’s disease. More to follow.
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August 23rd, 2008 at 12:18 pm
Hello.
I was diagnosis 3 weeeks ago with CD
Asacol cause me bad secundary effects.
Which medication or diet do you recomended
I will apreciate your opinion.
Sorry for my english .
August 23rd, 2008 at 12:18 pm
i can’t tell anything good on Crohn’s, which rules my life since 38 years, had parts of small and large intestines taken out.
and now i’m on IMURAN 200mgrams a day, seems it helps, but the technical problem is there now, i was hospitalized two times this year for blocked intestines nothing came out anymore !!
August 23rd, 2008 at 12:18 pm
yes i took seven years steroids, and they are very bad to me, my teeth fell out like apples from a tree and i never could sleep good woke up crying and all the shit, i was rejected by my family and several ’so called’lovers left me behind,i live alone now and enjoy myself listening music and the nature is good and so much of positive energy.
August 23rd, 2008 at 12:18 pm
Huge problem with Crohn’s patients (or anyone with chronic condition) depression. Have had crohn’s 35 years.. suffered depression since I was 13 but didnt know it till like..mmmm.. 8 years ago. Get help.. get meds.. they dont make you zombie like.. they can help..bottom line crohn’s sucks.. going for my third resection soon..will put up videos of recovery.. hang in there.. you are not alone.
August 23rd, 2008 at 12:18 pm
I would like to talk to you, I have crohns and been on the Remicade/Imuran combo for almost 6 years, just seems I’m getting worse all the time though, I had a colon resection about a month ago, I truely sympathize with you, I have been going through depression cause I am just sick all the time.
August 23rd, 2008 at 12:18 pm
In what way?
August 23rd, 2008 at 12:18 pm
Well, as you’re inflamed, you’re not absorbing enough nutrition to feel lively.
I don’t tend to feel depressed like I used to.
Before I was diagnosed, I was literally on deaths door, I had a wheelchair, I’d lost 6 and a half stone, amongst other stuff, and I guess I’m greatful for actually coming out of that.
The only time I get really depressed is when I have to go up to 5 steroids a day, they turn me insane!
August 23rd, 2008 at 12:18 pm
Have you noticed any problems with severe depression that go along with this disease? I’m having a big flare up now and I havent felt this down since I had surgery to take out some of my small intestine. I wonder what percentage of people with crohns also suffer from depression…..
August 23rd, 2008 at 12:18 pm
BTW, I know how you feel about steriods.. (prednisone) THEY HELPED MY INFLAMMATION but RUINED my BODY for LIFE!!!
August 23rd, 2008 at 12:18 pm
Hey girl.. I’m 26 and was diagnosed with Crohn’s back in 1990.
;(
I had one helluva childhood.. you could imagine.. several surgeries, appendicidious, fistulas, jusst in and out of the hospital for months at a time..
But luckily for me.. (KNOCK ON WOOD).. I have been in remission (pretty much) for the past several years…
I hope you are doing well now girl!
Peace & Love
If you ever need to talk.. hit me up, alright?!
Ness
August 23rd, 2008 at 12:18 pm
Thanks.
August 23rd, 2008 at 12:18 pm
Great Poem. It could have been written about my inter-personal stuff too. Or lack of it.
August 23rd, 2008 at 12:18 pm
Im so glad people on here actually respond. I’ll let you know how everything goes for me. Me second infusion is in just over a week. Seriously:) Thanks again for the response both of you.
August 23rd, 2008 at 12:18 pm
In my experience, it took 7-14 days to truely see the results. I hab many side effects: fatigue and susepablitiy to colds and flues. Hhowever, 80% of the crohn’s symptoms have subsided. I still get D and the ocational abdominal pain. But I hope the his suside over more uses of the drug. Goof Luck. Share your stories.
August 23rd, 2008 at 12:18 pm
My experiences has been fatigue for the first week after an infussion, then I would often cath a cold or tlu. But these are just my experiences. I have now others with far less side effects. Good luck.
August 23rd, 2008 at 12:18 pm
Thank you very much. I’m glad t inspired you.
August 23rd, 2008 at 12:18 pm
I’ve had it in the past and am about to start it again. I usually start to feel better about a week after, then I’m awesome until about a week before the next infusion. I get them every 8 weeks. Hope it works for you.
August 23rd, 2008 at 12:18 pm
Welp, I just had my first remicade infusion..I would really love to know how your doing. I didn’t have a bad reaction so I’m hoping this works for me as NOTHING else will. I’m 19 Years old. I hope your doing well…I don’t konw what to expect…I think I’m feeling better? Its only been 4 days since my first infusion…did you start feeling better that fast?
August 23rd, 2008 at 12:18 pm
I absolutely love your poem. I write as well, but have never taken the time to channel my feelings about Crohn’s into verse. You did a beautiful job and I have truly felt the same way when on prednisone. I feel inspired…might have to write that piece…
August 23rd, 2008 at 12:18 pm
I’ve had crohns for 8 years now and experience it all. Predisone is a good drug to take. It will make you eat alot and help you gain weight but it also has its down side because it does demage to your bones and after time you’ll have to stop taking it.
However remicade for me is amazing! It has controlled my fareups and has given me my engery back to hold a job and live a normal life. And to put icing on the cake, has me gaining weight
August 23rd, 2008 at 12:18 pm
i love to poop!
August 23rd, 2008 at 12:18 pm
some people dont know the real truth about prednisone thy dont realize that in do time it will make you swell like a ballon and cause pancreaitis!! ya real good!!!
August 23rd, 2008 at 12:18 pm
It may be a wonder drug for inflammation, but I have very bad side effects. So bad I would rather be in pain than have the side effects.
August 23rd, 2008 at 12:18 pm
How dare you talk bad about PredniSONE! I love PredniSONE i was on 120 mg last time I had a flare up and it was AMAZING!
August 23rd, 2008 at 12:18 pm
Thanks!