I Have Crohn's Disease
I'm back! Sorry to disappear so unceremoniously like that. I have a bunch of unfinished video scripts from the last couple years that I'm excited to finally be picking back up, but I'm still moving/working slowly, so thanks in advance for your patience. Missed you folks!
This video was already really long, and there are a lot of things that I didn't even mention, like diet (which varies for every single person with Crohn's) and things like ostomies (which is a huge part of life for many 'Crohnies'), but I'm still remembering how to make videos at this point, so please cut me some slack. Speaking of which, IBS stands for "Irritable* Bowel Syndrome" - my bad.
Resources:
www.crohnscolitisfoundation.o...
This book helped me: / how-to-be-sick
Communities for people with Crohn's (and their caregivers):
Reddit: / crohnsdisease
Discord: / discord
Video References:
www.crohnscolitisfoundation.o...
crohnsmapvaccine.com/
www.crohnscolitisfoundation.o...
0:00 Intro
1:40 My year of pain.
5:50 What is Crohn's?
8:25 Fundraiser
9:18 My 3 buttholes
10:53 Recovery
12:48 How to help people with Crohn's
Пікірлер: 302
All of you are so freakin kind and wholesome. Thank you. It's good to be back!
@samb6538
2 жыл бұрын
Thank you for posting this video. I have IBD too and this is definitely going to help me live with it
I feel your pain brother, I too have Crohn's. Glad to hear your government is helping you with it. I have not been as fortunate.
@ScopeofScience
2 жыл бұрын
Jesus! Sorry to hear that. I really wish healthcare was more valued around the world. Sending love brother!
@thejesuschrist
2 жыл бұрын
@@ScopeofScience amen. 🙏🏼
@sathirafernando6036
2 жыл бұрын
No way Jesus! I'd never thought you'd have Crohn's! I myself have had it since 11. Nearly 19 now and hoping to get some complications with fistulas sorted soon.
@bd5697
2 жыл бұрын
Jesus, I swear we have the same KZread habits. I see you everywhere lol
@michaelcorcoran8768
2 жыл бұрын
Let me guess the United States? The worst healthcare system in the industrial world?
Welcome back, Kurtis! We missed you! Glad to know you are doing better ☺
@ScopeofScience
2 жыл бұрын
Thanks so much, I missed you folks too!
Welcome back!! Really hope you feel better and get well soon. Thank you for the breakdown on Crohn’s disease. Looking forward to your new videos.
@ScopeofScience
2 жыл бұрын
Thanks Ankur! :D
Welcome back Kurtis and thanks for sharing your story, it's really helped me understand more about Crohn's disease. Thank you. My sympathies for having had such a rotten time getting diagnosed. Wishing you all the very best. Much love!
@ScopeofScience
2 жыл бұрын
Thanks so much Dom! Glad to hear it was informative. Really feels like no one knows what this is because it's too stigmatized for people to talk about 😶 anyway, it's good to be back!! 😁
Crohn's gang! That you were diagnosed with Crohn's straight off the bat tells me how much yours had advanced, I had a dx of UC initially until it progressed to be more clearly crohn's, I'm under the impression that's fairly common. Mine's been quite calm for a few years but I still had to drop out of my degree, and still can't work full time due to fatigue and joint pain and all the other stuff. Terrible disease. Glad to see you back, take it easy, i have my fingers crossed for ya
@ScopeofScience
2 жыл бұрын
Hey! Thanks so much for sharing your story. Sorry you've had so many struggles. I'm really shocked by how many doctors seem to think everyone with Crohn's can just continue working a 9-5 and live normally. Maybe that's true for some of us, but it definitely hasn't been the case for me this year... It feels like non-stop gaslighting... Anyway, I hope things stay calm for you, and I'm excited to check out your channel (I hadn't even heard of Marietta Blau!)
Glad to see that you're back. You're an important voice in the world! But sorry to hear about your diagnosis. It sounds like a real pain in the butt... (sorry about that)
@ScopeofScience
2 жыл бұрын
LoL. Humor is sometimes the only way forward, no apologies needed! Thanks ☺️
Best wishes and stay the way you are: a great , honest content creator! Please don't ever think you HAVE to produce content to make us happy. Your health goes first. Always! Take care.
@sp34277
2 жыл бұрын
thiss oneee 😁😁
@ScopeofScience
2 жыл бұрын
You are wonderful. Thanks Flo Ryda :)
Thank you for sharing this. I have suffered from Crohn's disease my whole life. I didn't get diagnosed until I almost died from it. I'm glad you're doing better and I'm looking forward to more weird videos! Edit: The experience also traumatized me. Seriously. You might want to consider seeing a therapist when the time's right. I waited too long to do this as downplaying the experience was the only way I knew how to cope at the time.
@ScopeofScience
2 жыл бұрын
Thanks! Im a big fan of therapy. I got a therapist before I got a diagnosis, and they've definitely helped me process a lot of the trauma. I definitely also used to downplay it to cope... Sorry you had such a terrible time getting diagnosed. I really hope you're doing better and are getting good care!
Welcome back sir, IBD and IBS are real monsters! Wish you a fast recovery!
@ScopeofScience
2 жыл бұрын
Thanks Haroun!
When I was in university I had a flatmate (as we call them in NZ) who had Crohn's disease. His was fairly well managed and it wasn't a big issue, but it didn't exactly look fun. Happy to see you back and a little more healthy than over the past year.
@ScopeofScience
2 жыл бұрын
Yah, I can see how life might return to mostly normal for me once I'm in remission.. but the flares are a 0/10 on the fun-o-scale. Thanks Soliloquy!
I'm sorry to hear about your diagnosis, as I get older I realise that at any moment my body can begin to fail me and how much our society it not equipped for people who have chronic illness. Glad to have you back and can't wait to watch videos about wacky experiments :)))
Sounds similar to my fibromyalgia, another inflammation disease that is normally found in 40+ yr/old women. I'm a 25 yr/old male..got discharged from the navy but the va takes care of me right now. Glad you're back!
Good to see you again, Kurtis! And sorry to hear about you being diagnosed with crohn’s, I don’t have twitter so I didn’t know why you were absent.
My dad had colon cancer and had to habe his lower bowels removed. We all had to adjust to him having his colostomy bag, but it must have been the hardest on him, as someone who was always very active and loved being on the go. I hope you can manage your illness well and you're able to be as comfortable as possible. Take care!
@ScopeofScience
2 жыл бұрын
Sorry to hear about your dad. Thanks for sharing. Yah, the activity level was a really big change for me too, but I'm getting used to it. Take care kind stranger!
Hang in there Kurtis. I feel your pain, literally. I do not have Crohn's but I went through several years of dealing with very painful absesses in that region until it took some very specialized diagnostic equipment to discover that I had a fistula. I would have an absess, get the operation, eventually heal, be good for a couple of years, and then back to square one. The final bout included 3 operations over a year long period with daily wound care visits. Not only was it extremely painful but it also was the most trying time for me from a mental health perspective, especially when things were not healing the way they were supposed to. Hopefully you have a good team of care around you now. That matters. Luckily I am almost 7 years healthy with no relapses. Can't wait to see what creative approach you bring to your next video. Thanks for keeping the conversation going on this.
@ScopeofScience
2 жыл бұрын
Thanks! So glad you're doing better. That sounds like a long haul
i'm so glad that you're doing better now, i can't even imagine how difficult the last 18 months must have been. thank you for sharing your story
@ScopeofScience
2 жыл бұрын
Thanks Miriam! I wouldn't recommend it lol. It's so good to be back here ☺️
Thank you for making this video. I was recently diagnosed with Crohn's in Canada as well with a very similar timeline to you. My symptoms began in late 2020 and I was finally able to get a colonoscopy in August and followup CT and MRI scans in the following months. The past year has been the most difficult and painful of my life. In the span of 6 months I went from being able to cycle hundreds of kilometers a week to barely being able to walk up stairs due to severe fatigue and pain. I finally became sick enough for my gastroenterologist to prescribe inflectra and am slowly beginning to feel normal again. Thanks for sharing your experience. It is very helpful to hear that other people are going through similar experiences.
@ScopeofScience
2 жыл бұрын
Wow that is a very similar timeline. Sorry you're going through this as well. May I ask what part of Canada? Rural or urban? Hope you're doing better on Inflectra!
dude i really hope you feel better, i was having problems with my intestines too it sucks
Welcome back. I relate to you a lot here. I was also diagnosed with an IBD very recently and a lot of your story mirrors my own (I dont have Crohn's I have UC). It hurt and sucked a lot, but luckily for me I didn't have it as bad as you did. Thanks for making this video.
@ScopeofScience
2 жыл бұрын
Hi Zach! Sorry to hear about your diagnosis. All IBD sucks. I hope you're getting good care my friend!
@hi__im_zack4890
2 жыл бұрын
@@ScopeofScience after about a year, moving around, doctor to doctor, medication to medication, i was able to get good care. It's crazy how long it takes all while you are having flare ups. Luckily, my symptoms were only moderate, and I have finally been able to go into deep remission. I hope you can do the same, and continue to get better.
Came here from Reddit after seeing one of your comments, hope you're doing better man. You seem like the sort of person to try a lot of things anyway but just in case, in terms of Seton's/fistulas I can't recommend a bidet enough. I don't even have a full setup, just a small handheld bottle with a long nozzle that I use personally but it helps immensely with keeping Fistulas clean and easing pain. I've currently got 3 fistulas, one of which I've had for over 10 years now, and my Seton's are 9, 7 and 3 years old respectively. I completely understand what you mean about the love/hate relationship. I will say if you do end up needing to keep them like I have, you do genuinely get used to having them, it's a cliche but I really don't notice most of the time unless I'm in a major flare up. The biggest issue by far is the discharge from the collections that build up, I use gauze pads every day but there's little else to do about that unfortunately. Wish you all the best with it, truly hope your treatment brings you into remission.
Welcome back!!! We all wish you the best
I’m sorry it’s taken a year for you to get back to some sort of new normal. I hope your treatment keeps working
Glad to see you back. I hope you get better during this journey
Love you and your work. Thankful you're back!!
Glad to have you back! I just found your videos before this hiatus and I love the messages you're putting out there. Whatever pace you create content, I'll be happy to watch it, and take care of yourself first of course.
Great to see you back Kurtis! Much love 😊
So glad to see you back! Hope you feel better!
Glad you're back! Wish you all the best man.
Glad to know you're better and I hope you recover quickly. Take care and all the best.
Welcome back and thanks for sharing your story!
You've been in my mind now and then. I was wondering if you had stress issues due to climate change, a paying job at an organisation working to reduce climate change, or were perhaps physically not well. Glad you are able to make videos again. There is no need for a tight upload schedule, we'll be here when the video is here. I was a type of social worker for 15 years and had clients with Crohn's disease. I also have friends with Crohn's disease. The stigma is an obstacle in life by itself. The practical issues are as well. I just had no idea about it all and it was constant shock and learning of all things that can be affected by it. I did see they found their balance again, possibly with a different job and different activities in their free time. I hope you find a personal balance and a way to make your time feel well spent again. I think you will, or already have.
@ScopeofScience
2 жыл бұрын
Thanks Ivo! It's been a journey for sure, but I think I'm much more Zen about everything now. Happy to get back into climate action, and feeling confident that I can weather it like a leaf on the wind 🍃
Glad to see you back! I've missed your videos. I hope clearer skies are ahead. Also, transparency is always the best educator. Thanks for sharing.
Welcome back
I missed you so much! I'm glad you're doing better now. Take care!
welcome back! your very underrated and have been thinking about you recently. your story with your diagnosis is very important. you are such a strong person. wishing you the best. love your videos.
I'm wishing you all the best, Kurtis! Thank you for the educational insights. Looking forward to having your videos in my feed again :))
Welcome back Kurtis! I've missed you for the past year, and I thoroughly enjoy your videos, so I was super worried for months, lol. Good to hear you're doing alright now.
Hey Kurtis! I'm sorry you had to go through all this. I had heard about the illness before, but never knew any specifics to it - thank you for sharing your experience! I'm looking forward to whatever content you're gonna be making in the future. Take care of yourself, greetings from Germany :)
I'm so happy you are back and getting better. I hope you continue to get better.
Good to have you back. Sorry to hear about your illness and I wish you well. Great job with the video. As always you've communicated a diffict subject really well.
Great to see you speak up for the IBD community! I hope you get well even more, come to terms with it and live a happy life!
Im glad youre back man. I hope you get better as they day went on :)
Welcome back, we missed you! I am very glad you are doing better now. Thank you for sharing your story. I believe such videos help to "demistify" chronic illness. Your way of describing the disease is both touching and informative. Your video is (as usual) very well done. Thank you so much!
Glad your back Kurtis! Thank you for explaining what's going on and your fight against social stigma, hopefully it helps others too!
wishing you he best of luck Kurtis!
Glad you're back and feeling better. Hoping it stays that way.
Great to see you back! You've been missed.
All the best Kurtis!
I was getting worried, glad to hear you again and that you're doing better. Sorry you had to go through this. My dad has had Crohn's but obviously never talked about it, so thanks for explaining it so easily.
hi, Kurtis! I am deeply sorry for what you've been going through. I wish you all the best and hope you will be able to provide your body with all the means and love and support, so that it will be able to heal as much as possible. Love and light to you!
Hi Kurtis, I have never watched a video of yours but accidentally stumbled across this video and I am so glad that I did! Thank you for sharing your journey with Crohn's.
Great to see you back brother.
great to have you back
Welcome back and thank you for sharing your experiences ♥
@ScopeofScience
2 жыл бұрын
Meropi! What a pleasant surprise to see you here. Thanks for the warm welcome back :) Hope you're doing well!
Good to see you back!
We missed you, glad you are doing healthy and that you're finally back and
Welcome back, hope u get well soon.
"Love you!" - that's hillarious. Thanks for sharing your story, I'm sure it will help others.
Glad to see your back mate! Hope it continues to get better and i'll be watching any video you release. Don't stress just make sure your happy
@ScopeofScience
2 жыл бұрын
Thanks Hedgehog! I'm definitely learning how to chill out more - though it certainly isn't my natural state lol
I can't believe i just watched your plastic video yesterday and i was like omg he stopped making amazing videos.. And TodaY you're back wow thank god 😍😍you're awesome thank you.
Glad to have you back brother!
So glad you're back!! excited for your potential new content and all the best for your personal future :)
@ScopeofScience
2 жыл бұрын
So nice to feel so warmly welcomed back. Thank you!
Man, I'm sorry to hear that, but at the same time, I'm happy to know you're doing much better! This video was very enlightening (I'm a bio student and a real pathology nerd haha) and I hope you reach your goal of reaching as many people as possible. :) This video is well made! We had covered this disease briefly in class 4 years ago, and the MAP part was still very nebulous if mentioned at all, so progress has been made in such a short time and I hope more research is done :) Can't wait to see more of your videos!! I always look forward to them :) Take care of yourself!!
Good to see you back
Kurtis, sorry to hear about your suffering. Hopefully now the diagnosis has been made and treatment has begun you can recapture some kind of good quality life again. Crohn's is in my family too but so far I have been "lucky" enough to only have UC. Good luck to you and if making videos helps your psychological recovery too then all power to you, mate!
My goodness, good luck Kurtis. I hope you recover as much as you can as fast as you can!
@ScopeofScience
2 жыл бұрын
Thanks Tyler! I'm definitely on the right track now :)
Wow, crazy, I was just thinking about you the other day. I'm sorry to hear, but sending all the positive vibes. It's good to see you, thank you for sharing your story with us
@ScopeofScience
2 жыл бұрын
Thanks Colby! It's so good to be back ☺️
i am glad that you are okay, much love
Sending love from another chronically ill Canadian. Our healthcare system was on the verge of collapse before the pandemic and it’s in such an awful state right now. I’m constantly scared for my sick friends and have had to pursue my own care out of country. 💔
@ScopeofScience
2 жыл бұрын
Sorry to hear you're ill as well, Eileen. We're currently talking about moving over this as well. Really feel like this could have gone a lot better for me if I lived somewhere else. Hope you're doing okay!
I have had a few friends over the years that have had Crohn's. It's never been awkward, and they are great people. I hope you continue to feel better! Really stinks that it took so long for your health care system to start working.
Dude you are awesome! Wish you all the best!
I’m so sorry to hear that, Kurtis. But if I know you, you’ll keep fighting 💪🏻 Im happy your back, you’re a true fighter!
My friend and former boss's son had Crohn's. Sadly he passed when he was fairly young, though not of Crohn's as he developed leukemia, but he had some tough days here and there too. I hope you are able to do much better now, Kurtis, and with research and luck may you be one of those who is able to see a permanent cure in your lifetime for this.
Great to have you back, and glad you're doing relatively well! Looking forward to more Kurtis videos :)
It's so good to have you back, Kurtis!! I missed your fantastic insight and perspective over the past year, but obviously your health comes first. Take your time, we'll still be around if it's still gonna take you some time to get back on your content schedule.
@ScopeofScience
2 жыл бұрын
Thanks Josie ☺️
Thank you so much for sharing. And it's so lovely to see your face again, Kurtis ❤️
@ScopeofScience
2 жыл бұрын
Thanks Adam! It's good to be back!
Thank you so much for sharing information about this! I had an anal fissure a few months back, and that was horrible - can only imagine your pain. I wish for your relief and am crossing my fingers that we find a cure 🤞🏼
Hey, was concerned to not see any updates on your health online. Genuinely happy to see you back. People like you are the real changemakers. Loads of love to you Kurtis.
@ScopeofScience
2 жыл бұрын
Thanks Gaganator! Feels good to be back 🙂
Have never seen your channel before but I watched this and you now have a supporter/subscriber in me. One of my favorite friends deals with colitis and my heart breaks when he has flare ups. Wishing you the best, looking forward to what content you have/will have
@ScopeofScience
2 жыл бұрын
Thanks Raul! Wishing your friend a long and strong remission :) If you're wondering where to start on my channel, here's the video I'm most proud of making: kzread.info/dash/bejne/gZaiydaugKmvaKQ.html
Welcome back. I was scrolling through my subs and i was wondering what happened. There was no info from you to found anywhere. Glad to know youre better. Keep thinking positive! Stay strong!
@ScopeofScience
2 жыл бұрын
Sorry to leave you in the dark like that! I kept thinking I was going to get better and so I didn't post anything until it got to the point where I was too busy fighting to stay alive than to think about posting :/ thank you!!
That sucks Kurtis! But I'm so glad you're feeling (at least a little) better; able to take advantage of modern medicine. Your videos are inspirational, I'm in awe of your commitment to your message, and to the community you've built here. I hope your journey through this is a best-case-scenario, whether you post videos or not, you da best... Take care.
So glad you are feeling better mate! Take it easy ❤
Welcome back, Kurtis! I agree with you so much about the need to talk about these diseases and how our intestins work because i even work with this. As an artist i keep making giant paintings of bowels and guts in white backgrounds. The intestins are such a beautiful organ and they are so sensitive and debilitated by anything that messes with the balance of the bowels microorganisms
Currently, Brazil is just recovering from a shortage in immunosuppressants, especially some used to trest Crohn's. Tragically, people stopping treatment with Monoclonal Antibodies often results in them developing antibodies against the treatment, making it no longer work once they resume. That might be the case for a large portion of Brazilians with Crohn's Disease.
@ScopeofScience
2 жыл бұрын
That is heartbreaking. I'm so sorry to hear that.
Happy to donate! Hope they find a cure for this. Good luck with the treatments until then. Thank you.
@ScopeofScience
2 жыл бұрын
Thanks Wally! Much appreciated :)
Welcome back!
thanks for talking about this. we will always be here
Hey ! Im glad to know that you are doing okay now . Stay safe brother !
Good to see you back, Kurtis. Best wishes!
@ScopeofScience
2 жыл бұрын
Good to be back. Thanks Brian!
I’m sorry, and how frustrating to have to wait so long. Sending you positive thoughts.
@ScopeofScience
2 жыл бұрын
It was a long year, indeed. Thanks Joseph!
Welcome back Kurtis, stay strong, hope you are back to feeling normal again soon.
good to have you back stay strong good to see many many good people in the comments section, some of whom i know
Kurtis, I am so glad to hear that you are doing okay, and so sorry for what you've been through! You've been an inspiration for me ever since i started studying Biology 4 years ago and this fall I'll be starting a masters degree in environmental science. Keep rocking it, don't let your butt kick you in the butt and stay the awesome person you are! Cheers from Germany, Thies
@thiesomatix
2 жыл бұрын
Ah, and also, big respect for speaking up about this and normalizing talking about health issues like this!
Missed you, wonderful to see you back, sorry about the Crohn's, but more importantly, you look fantastic! :)
We missed you!!!
It’s really good to have you back, Curtis. You are a survivor, resilient, you have that fighting spirit needed to go on being the greatest despite everything life throws at you.Thank you for opening up. Take good care of you, really hope you get better soon, and adapt to your new life !
@ScopeofScience
2 жыл бұрын
Thank you! 💚
I really missed you! So sorry to hear about this. I hope things get even better.
@ScopeofScience
2 жыл бұрын
Missed you folks too. Thanks Sammy!
@sammystank7174
2 жыл бұрын
@@ScopeofScience If you have time to indulge me, I'd love to know, in your opinion, what are the flaws of Canada's Healthcare system? I am from the US and I'm a passionate advocate for universal Healthcare and socialized medicine. You seem like a reasonable and level-headed guy, I was wondering what Canada's issue is. I always heard it was ideal but I'm sure nothing is perfect.
Glad you got it figured out and keep up the good videos bud👍👍
Stay strong and get well.