Does anyone suffer from Crohn's or colitis?

Posted by blu15 @blu15, Feb 18 8:32am

I got diagnosed with Chrons disease back in January I’m 56 years old got it unexpectedly from eating something that caused food poisoning and I never got better. Ended up in the ER in December and my body just shut down. I’m on the mend getting better everyday but I’m skeptical about the medication they put me on! Bad side effects!

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Been diagnosed for a few years now... I can feel a flare coming on... I know what to eat, how to care for myself and breathe through pain

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@fionah

Been diagnosed for a few years now... I can feel a flare coming on... I know what to eat, how to care for myself and breathe through pain

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Do you still take medication? I really hope one day after I am in remission I don’t have to worry about medication and just eating right & taking supplements!

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@blu15

Do you still take medication? I really hope one day after I am in remission I don’t have to worry about medication and just eating right & taking supplements!

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Brace yourself... it's a hell of a ride... there are good days and bad. Remission lasts only as long as it wants... I do go off meds when I feel better. Diet and stress .. control that ... you will be able to manage (and stress and depression ...that's the hardest part)

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Many meds for chrons & colitis on the market and everyone's symptoms are not the same, I was on 1 and had bad reaction, now on Skyrizi and can't say if working or not.
The true tests are scope top and bottom.
Get a good Gastro doctor
Take care

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@fionah

Brace yourself... it's a hell of a ride... there are good days and bad. Remission lasts only as long as it wants... I do go off meds when I feel better. Diet and stress .. control that ... you will be able to manage (and stress and depression ...that's the hardest part)

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Thank you 🙏 I pray it will get easier but I hope you will get through this as well! Such a horrible disease to have and I got mine so suddenly after November from food poisoning and I just never got better!

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@jer22

Many meds for chrons & colitis on the market and everyone's symptoms are not the same, I was on 1 and had bad reaction, now on Skyrizi and can't say if working or not.
The true tests are scope top and bottom.
Get a good Gastro doctor
Take care

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Thank you 🙏 hope you are doing well yourself such a horrible disease to have and go through it’s rough but I’m hopeful! ❤️❤️

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I've had collagenous colitis (aka microscopic colitis) for 8 years. I'm 69 and 14 years ago my gluten intollerance morphed into celiac after catching H1N1 (gluten free). I've kept a food log for 14 years so I was able to see that most legumes and a few other things caused flares; my GI said avoid all NSAIDs because they irritate the GI tract. My autoimmune diseases are controlled by diet, destressing (not that easy when one is ill), exercise, and getting enough sleep/rest. Consider an elimination or FODMAP diet to see if that gives you info to control the flares. Chrons is a nasty disease.

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@blu15 I've had Crohn's Disease for 36 years. I've been on a number of different meds and treatments as they've evolved a lot since my initial diagnosis. I am currently on Rinvoq. Managing your stress and taking note of foods that upset your stomach are key. Managing your stress is the really tough one and docs love to throw that out like you can just snap your fingers and make it happen. You know your body better than anyone and Crohn's and Colitis will force you to listen to it. Best of luck and I hope you feel well

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@kayabbott

I've had collagenous colitis (aka microscopic colitis) for 8 years. I'm 69 and 14 years ago my gluten intollerance morphed into celiac after catching H1N1 (gluten free). I've kept a food log for 14 years so I was able to see that most legumes and a few other things caused flares; my GI said avoid all NSAIDs because they irritate the GI tract. My autoimmune diseases are controlled by diet, destressing (not that easy when one is ill), exercise, and getting enough sleep/rest. Consider an elimination or FODMAP diet to see if that gives you info to control the flares. Chrons is a nasty disease.

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Thank you for sharing about your health.. I’m scared about the future with Crohn’s because it’s all new to me.. can anyone go off meds & still be ok ? Like I’ve never had to go on medication only for cholesterol meds.. I do take supplements as well. But they put me on azapriphine! My insurance isn’t the best and that’s what my GI doctor has prescribed for me for now seems to be working not many side effects at this point it’s been 3 weeks. I just worry about long term side effects and quality of life in my future. I’m just worried and so scared at the same time!

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@exitframeleft

@blu15 I've had Crohn's Disease for 36 years. I've been on a number of different meds and treatments as they've evolved a lot since my initial diagnosis. I am currently on Rinvoq. Managing your stress and taking note of foods that upset your stomach are key. Managing your stress is the really tough one and docs love to throw that out like you can just snap your fingers and make it happen. You know your body better than anyone and Crohn's and Colitis will force you to listen to it. Best of luck and I hope you feel well

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Well I’m scared to death about what my future looks like with Crohn’s & the medicine my GI doctor prescribed me. I’ve never had to deal with such a nasty disease I’m doing good now but I don’t want to stay on medication forever! I take my supplements which helps as well and eating healthy at this point! Thanks you for sharing your experience on this nasty disease! Just sucks one day your normal then this hits out of no where and everything changes!

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