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What is it really like to live with Crohn's Disease?

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What is it really like to live with Crohn's Disease?

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Lee__R

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01/16/2018 at 4:06 AM

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Lee__R

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Last activity on 04/03/2020 at 5:04 PM

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Hi Carenity Members,

I am hoping that the community here at Carenity with Crohn's Disease will use this forum to post what life is really like when living it with Crohn's Disease.

Please post your story about living with Crohn's Disease.

Include information that you feel would be important for a newly diagnosed person, family member, or caregiver to know.

The goal is that this discussion turns into a useful part of the forum where new users, current users, family members, and caregivers could come for helpful information regarding what life is like for those living with Crohn's Disease.

Through a community we are stronger.

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Unregistered member

09/30/2018 at 5:55 PM

@Magmil84 I was very recently diagnosed and the can relate to every word you wrote.

I am trying to find ways, outside of the typical treatments/medications to put this into remission. I have a very active life style as well as a very active career. This disease makes the every day so difficult. The only thing keeping me afloat right now are the steroids which I know is short lived.

Have you had any success with diet change?

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2018-09-30 17:55:25

Lee__R

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10/04/2018 at 4:20 AM

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Lee__R

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@Nicole21993‍ Welcome to Carenity. How long ago were you diagnosed?

Have you modified your diet already or looking for advice on modifications?

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2018-10-04 04:20:31

cronky1!

10/04/2018 at 4:29 AM

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cronky1!

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@Nicole21993 Sorry to hear about your diagnosis.

I would recommend trying to understand what are your triggers... because remission can be best achieved by understanding what triggers your symptoms and taking your medications. Unfortunately, this comes with experimentation and just life experiences.

Some common triggers throughout Crohn's patients, from my learning, are stress, NSAIDs, smoking, and certain foods. But again, you may discover different triggers for yourself and then you want to do your best to modify your life accordingly to avoid those triggers or time them to situations where you are not in public or doing something active.

Hope this helps.

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2018-10-04 04:29:47

Courtney_J

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07/21/2020 at 5:43 PM

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Courtney_J

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Last activity on 08/08/2022 at 11:09 AM

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Hello everyone,

How are you doing? Have you seen this discussion?

What is it really like living with Crohn's disease? Is there anything you wish people knew about Crohn's?
@paradox59‍ @Oldman030566‍ @Jordang22‍ @adria85‍ @Jilaina02‍ @Sarah.mills‍ @mommaof2‍ @citabriapiper‍ @Bchrones‍ @nishawk‍ @mguerra2‍ @pierogies309‍ @katesin‍ @erinsnan0153‍ @Sburnham22‍ @padraig‍

Feel free to share here!

Take care,
Courtney

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Courtney_J, Community Manager, Carenity US

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2020-07-21 17:43:03

keeppushingon

07/21/2020 at 6:23 PM

keeppushingon

Last activity on 11/15/2022 at 11:48 AM

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9 comments posted | 9 in the Crohn's disease Forum

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@Courtney_J I think for me, I wish people would understand that Crohn's isn't predictable. It comes and goes. I don't always know when I'm going to have a flare so I can't always plan ahead for things. it's hard.

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2020-07-21 18:23:30

rachelle4evr

08/19/2020 at 3:47 PM

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rachelle4evr

Last activity on 03/15/2023 at 2:16 PM

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33 comments posted | 27 in the Crohn's disease Forum

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I wish people could understand how Crohn's completely robs you of your peace of mind. I'm constantly on alert for any flare symptoms and I often feel pretty shit about myself. I'm always afraid of when my body is going to turn on me when I'm not expecting it.

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2020-08-19 15:47:49

Teresabolton

12/22/2020 at 10:52 PM

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Teresabolton

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I am so glad that finaly i have found people like me that understand how i feel o found out on 1989 about my crohns then it was 6to 7 diferent pills a day but cannabis helped alot till now i was given valturin ( dont. Use ) now back at dr. I give. I am so done

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2020-12-22 22:52:37

LYNNSanta

12/27/2020 at 7:05 PM

LYNNSanta

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@Nicole21993 Paleo changed my life and for someone new to this disease might help you achieve remission. Ifound out about it thru a support group. I was 2.5 years w nonstop diarrhea after my last surgery. I was going every 5 min., I now had short bowel on top of Crohn's bc the surgeon didn't remove it all. Someone encouraged me to try Paleo. I started w AIP for 30 days, gradually going Paleo. I've been there ever since. It helps me keep my disease tolerable. If only I knew of this diet 43 yrs ago. 💜💪

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2020-12-27 19:05:09

rachelle4evr

01/14/2021 at 9:25 PM

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rachelle4evr

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@LYNNSanta Interesting, is paleo anything like the keto diet? What's AIP? Sorry I'm a noob! I've tried keto and other diets before and they haven't done much for me so I'm interested to learn more!

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2021-01-14 21:25:52

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Edited on 08/24/2022 at 3:12 PM

I achieve remission when I stumbled upon a video on YouTube after many sleepless nights I hope it works for you too [This content has been moderated by an administrator.]

What is it really like to live with Crohn's Disease? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/what-is-it-really-like-to-live-with-crohns-disease-15 2022-08-24 01:55:36

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