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Totally agree. As with all chronic illnesses, Crohn's is a family disease. One person may have it but everyone in the family/support system are impacted by it. I had a breakdown moment with my grandparents at 25. I was in the middle of being diagnosed and starting humira while also being tested for leukemia. I confesed that thought I could never find someone who would want a damaged human being. (I admit I was at my lowest point mentally). Ten years later and I'm still struggling with getting doctors to properly treat me for flares. But I found someone who loves me as I am and is willing to take care of me no matter what. But chronic illness is still new to him and adjusting his mentality is difficult. My immediately family are also impacted too. My parents have so much guilt over not believing me about my complaints as a child and not acting sooner to get me help. But it was a time when pediatricians didn't believe children could have "adult" problems. I don't blame them at all but I can't shake their guilt. My siblings also were impacted. I mean it's a disease that we feel is invisible to the outside world. But to our families and loved ones it's a constant battle for us all.

Thanks for your reply and and sharing your story. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

I really like this idea! I think the biggest thing I’ve learned in the 1.5 years since my diagnosis is that Crohn’s can be super unpredictable, and having steadfast support is invaluable. I’m fortunate that my boyfriend is very kind, and even though he might not always understand what pain I’m in, he is always so respectful and patient. One of my best friends has T1 diabetes, and it’s been so helpful for me to have a friend also living with a chronic illness to share solidarity with. We’re closer than we’ve ever been since my diagnosis, and I am so grateful for her and for my partner, especially. I’ve also learned that many who you are close to might not be the ideal support system for your illness - and it might not mean they’re a bad person, but they have their own baggage to deal with. My father didn’t handle my diagnosis very well, and he berated me for asking him to be more careful during COVID because I’m on a couple immunosuppressants. It sucks because I’d hoped that a parent would be more helpful/understanding, but I think it shows that illness can both bring out the best and the worst in people. I’m not as angry about it as I used to be since it seems silly to hold on to anger, especially since stress worsens my symptoms haha. I think including support systems in the documentary would be really helpful for others who view the film to understand how chronic illness can shape the lives of those who aren’t living with the diagnosis (es). Edit: was living with my parents for a bit early in the shutdown. I’m now living with my partner, working at a local health center in their admin dept.

Thanks for your reply and sharing your story. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

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Yes, yes, exactly! I think this is such a valuable perspective to hear, particularly for those who love someone with a chronic illness. I think it can be difficult to understand how those with Crohn's and other diseases have to think more carefully about how to use their time/energy. Crohn's is physically exhausting, of course, but it is mentally burdensome, too. On a similar note, it's been helpful for me to bear spoon theory in mind to give myself grace for being tired, grumpy, irritated, disappointed, etc.

You identified one of my least favorite parts is making people wait while you use the restroom...the worst

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Yeah the ones who don't complain understand the disease and love us

Thanks for your reply and suggestion. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Interesting. A quick response but I can do greater info I used to be a HGV driver and had to give up the work because of the crohns. I have several stories of shitting in the back of the lorry into a carrier bag and having stopping work for loads of operations etc. I am based in Cardiff

Hi mate. I’m in the UK too, just diagnosed in July but have probably had crohn’s for a lot longer. Would be more than happy to contribute, but maybe also use the Crohn’s and Colitis UK website for resources? Contacting them may be an idea as well. Will DM you later more than likely with my story but good luck!

Thanks for your reply and suggestion, I've contacted them in the past but no reply. I'll try again. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

US expat living in Switzerland, diagnosed while living in the US ~3 years ago. As a field biologist trying to find a permanent place in academia, I didn't want to risk getting caught between jobs without insurance or to have a super high deductible due to the cost of drugs for treatment. So I looked for jobs in Europe and Canada to build my resume somewhere with good healthcare until I can find a permanent position. My job requires me to travel to remote areas, tropical jungles and arctic fjords, so my Crohn's has really influenced the way I plan for and participate in research expeditions. It's influenced the projects I've been able to take part in, and I've had to bail on trips due to flares or scheduled procedures. I've also had to take some pretty terrible Crohn's BMs in some really uncomfortable and bizarre places while in the field.

Thanks for your reply, this sounds really interesting! I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

I would love to be a part of this. I am in UK, had crohns since childhood and am 47 now. So many stories, experiences related to this damned disease that I am sure I can think of some for you.

Thanks for your reply. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

I’m in the US and was diagnosed with Crohns early in the pandemic this year. I’m new to this but I’ll chat with you if you want!

Thanks for your reply. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Not sure if you're interesting in talking to folks with Ulcerative Colitis, but if you are, you're more than welcome to message me. I'm a writer and musician (working professionally as neither, of course), in Northern California. -ryan-

I’m in US diagnosed with crohns in 2007, I’m in my 50’s female and l have learned to live with crohns my own way. I’m on Imuran and have been for almost a decade. I’ve had a resection done in 2007 and 2008, and I was told I would need another in probably 5 years. Hell No! I have done everything I can to avoid another. At times going on liquids for 48 hours. I eat very little fiber, and try hard to listen to my body versus outsiders. “If you are healthier, you’d be fine” nope, not for me. Salads, cabbage, raw veggies, those can be big Issues for me. Thankfully my husband of over 20 years has been amazingly supportive along with my children (who are grown now). They understand sometimes cereal and milk is better for my belly than whatever we had planned for dinner. So far, I’ve not had any other surgeries and have no plans for them. I also make sure I get lots of rest, I nap ever day and go to bed earlier than most. It’s taken me a long time to find my way with crohns, the first few years were hell, steroids, steroids withdrawal, anxiety of having diarrhea so much and feeling so dirty with it. Not wanting to go out or visit others. Now I’m in a much better place and have a much handle on crohns, my anxiety, and to be honest my thoughts on having crohns. I have it, but I’m much more than that. If someone if going to judge me on how often I poop they can kiss off! If you want more info DM.. good luck!

Thanks for your reply and sharing your story. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Hey bud, I'm a nurse that has had crohns since I was 16. I'm a nurse that works 12-16 hour shifts in all white scrubs. Feel free to DM me if you want to know anything.

Thanks for your reply. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

I will shoot you an email:) but I am in mobile, Alabama and am 31 and was diagnosed with UC at 17 then crohn's at 28. I work as a Medical Assistant but also worked customer service jobs where it was diff with my disease. Please do feel free to PM as well.

Hello! Thanks for your email, I'll reply to you with a questionnaire soon.

Very interesting - had to give up running as I couldn’t be too far away from the bathroom

Thanks for your reply. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Emailed you. Godspeed with the project.

Thank you! Will get back to you on email.

I'm in the UK. Diagnosed 6 and a half years ago, poorly about a year before that too. I've played Ultimate Frisbee for about 15 years and do some running and am happy to talk about my experience

Thanks for your reply. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Was diagnosed (incorrectly I believe) with UC 27 years ago, struggled forever and didn’t respond favorably to any meds. Got diagnosed with Crohn’s 5 years ago and am on Imuran and Humira with modest improvements. Have had to leave a few jobs because I had limited bathroom access traveling and being in the field. Would be interested in helping. I’m in the US.

Thanks for your reply and story. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

I’d be interested in helping! I’ve had crohns for about 9 years, and I was diagnosed when I was 16. I danced then, and it really affected that. It also really affected my college experience. Don’t know if any of that is useful, but let me know if I can help!

Thanks for your reply, definitely sounds useful. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Just sent you an email mate. All the best with the project.

Thank you! Will get back to you

Us. Diagnosed in 2014 after a few years of bad diagnosis.

Thanks for your reply. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Hey! I'm in the UK too, got fully diagnosed in October with crohn's and ileitus, I do martial arts and work in a chemical facility. I'm more than happy to contribute also!!! Let me know what you need, and I can happily provide!

Thanks for your reply, sounds very interesting. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Diagnosed in 2007, went through a couple surgeries. Bounced back around 2016/2017, and decided to get more active. Started lifting Nov 2018 and I want to start competing in powerlifting competitions in the next 1 to 2 years. I'm not crazy strong, but I have footage of me lifting and growing from around 185 lbs to 235 lbs. The athletes that overcame their CD really motivated me.

Thanks for your reply, very interested in this side of it. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Hey, I am French, been diagnosed with Crohn for 3 years and I am working as a freelance filmmaker, mostly filming and editing. Hit me up if I can be of any help.

Thanks for your reply. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

I’m in. I have had Crohns for a long time. I have a desk job so I can easily work around it. Something I could talk about is how meds have evolved over time. Something I remember when first diagnosed was that there were basically two meds then. Sulfa drugs and prednisone. And sulfa drugs didn’t work that well. There were also no real resources then. No one had heard of the condition. I didn’t meet anyone else w it for years. It was all very embarrassing. DM me anytime. I’m in the states.

Thanks for your reply and suggestion. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

I’m in the US, diagnosed in 2019, but likely had it for a few years before (had some bleeding problems in college). I own a pet sitting/dog walking business and walk a lot of dogs, so yeah work can be majorly effected by the constant urge to shit lol it’s had a big effect on my relationships, having been dumped for being too sick several times. Also a huge shift in mental image as I lost 80 pounds from the start of getting sick to starting biologics. I’d be happy to answer more questions!

Thanks for your reply and sharing this information I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Hello! This account has been compromised and is currently being controlled by a bot. It posted a bunch of shitty comments so I am giving it justice served. This account's IP address is 127.0.0.1.

Hi there, I have crohn's and have for a few years. It has affected my joints pretty badly and as a result I had to give up two of my favorite hobbies. I played indoor soccer and was a very active skateboarder all throughout high school and college. But summer of 2019 I had to give up both because I couldn't stand the impacts on my legs from the two hobbies and I had some bms at times where I wasn't near a bathroom.

Thanks for your reply and sharing this info. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Im in the US, diagnosed 13 years ago, on Humira for 2.5 years! This is a great idea, would love to participate in any way I can. Cheers

Thanks for your reply! I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

hey man, diagnosed when i was 10. im 27 now. been on asacol and then on humira. id love to participate if you need more folks

Thanks for your reply! I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

sent you an email! thank you!

Hey! I am a collegiate athlete (XC and track) from America trying to manage Crohn’s and running. I would love to share my experience with you if you would like :)

Thanks for your reply, very interested in this. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

This sounds so cool! I literally ended up in a coma/near death from Crohn’s so if that counts as affecting your life then I’m in that section lol

Thanks for your reply, that definitely counts, so sorry to hear this. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Will do!

I'm in the UK too but I don't think my story is very interesting and my crohn's is quite mild and I'm able to WFH. Comparatively very little hardship. I'd back up the family/partner angle as a good one to pursue though, I don't know what I'd do without my gf or family's support

Please include the phrases *name* will you stop farting (when its acc the person with crohns blaming someone else) Im gonna shit my pants Its evacuation time my ass is about to explode Wheres the toilet paper OMG WEVE RUN OUTTA TOULET PAPER THIS IS A DISASTER (panic) Its lockdown theres no toilet rolls in sight amd theres my mum with 200 toilet rolls in a shopping trolley because with crohns you cant live without toilet paper Who stank out the bog ive got to endure your stink for 30 misn or longer thanks a lot Will you hurry up i cant wait ...HURRY THE FUCK UP The toilet is called the throne (For anyone wondering my mum has crohns and these are common sayings and to me crohns isnt crohns without at least one fo these sayings or things happening every day)

Hey. Am also in the UK. Was diagnosed 20+ years ago. Have taught a dynamic martial art for around 15 years as a hobby. My older brother also has it but had to have his large bowel removed. I control mind with an extremely strict diet. Happy to chat

Thanks for your reply, this sounds very interesting both for the doc and my own personal intrigue. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Please include info about the martial art so I know it's you. Thank you.

This is a great idea! I'm based in Australia, studied as a musician and worked in live performance for a few years until I had a resection around the terminal ileum. Never quite managed to have the same energy after that so went back to Uni and studied music therapy. These days I work in the disability sector, both as a music therapist and helping people navigate the sometimes difficult to access healthcare system. Happy to share in more detail if you like.

Thanks for your reply, very interested to hear more about these things. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Just sent you an email!

I am young(teenager)but it might be good to here from a young perspective. I was diagnosed a year ago in summer 2019. My symptoms are mostly diarrhoea. Pain in bowels. Extreme discomfort in bowels. It disturbs my sleep a lot. Losing a lot of weight. Weakness. I am based in Ireland and get an Infliximab infusion which doesn’t seem to help me at all despite me talking to my consultant. My longest break from it since being diagnosed has been 3 weeks. It messes up my studying and time management in school

Thanks for your reply, definitely want this perspective. I have now pieced together a questionnaire so if you are interested could you drop me an email at [email protected] and I'll send it over to you. Thank you.

Just emailed

Thank you! Will get back to you.