What is it Like Living With A Diagnosis of Crohn's Disease? | Ryan Zanganeh | TEDxAshburyCollege
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- Опубликовано: 21 июл 2024
- In this highly personal TEDx talk, Ryan talks about living with Crohn's disease and the challenges he has faced.
Ryan in a Grade 11 Student at Ashbury College.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
I've been on the Mediterranean diet for half a year now, and since switching, I've not had a single flare up, which was previously a monthly struggle, and I had a daily struggle of constantly feeling tired and drained. After switching diets, I feel more energetic and able to handle my daily tasks with proficiency. I'm hoping to go back to the doctor at the 1 year mark to see if there's been major physical improvements, then decide where I want to go from there.
This opened my eyes to the seriousness of this disease. I myself struggle with irritable bowel syndrome so I can understand a fraction of what these poor patients go through. Crohn’s disease is a debilitating inflammatory bowel disease that affects millions of people and it is a conduction that requires a personalized treatment approach. I think it is so important that doctors listen to these patients intently, keeping in mind that every patient’s symptoms are totally different from another person even if they have the same diagnosis. I really liked Zanganeh’s talk because it gave me the perspective of the patients that hopefully I will treat in the future. It made me realize how hard their lives are and how fear is a part of their lives. I argue that it is really important that physicians pay special attention to patients who have Crohn’s disease. Many people with Crohn’s disease often struggle to communicate their symptoms and advocate for themselves and it is essential that doctors listen actively, manage their chronic pain, and develop a trusting and collaborative approach with them, their other doctors, and their family. I argue that the treatment that patients with Crohn’s disease should be given in a personalized fashion, recruiting the right types of medications, dietary changes, and lifestyle modifications to control their symptoms. Because this disease affects the mental health of patients, I argue that it would be very important that my patients also receive therapeutic professional help to manage any anxiety or depression that could be comorbid with this condition. It was heartbreaking to hear about the physical and emotional turmoil that Zanganeh went through as he himself went through his treatment process but I am glad to have people like this who can provide hope for other patients struggling with this diagnosis.
Proud of you Ryan, I love you man, I know it's a tough spot but keep going, you got this my guy!!!
Thanks for this! I just turned 21 and got diagnosed with Crohn’s in my small intestine! Going Thursday for medication! I lost 20 lbs and had stomach pain and diarrhea in January and I have had flares since. It is no fun!
Welcome to the club! I'm interested in what they're prescribing these days? Usually they blast you with steroids initially. I've been on Cimzia since i think it came out, trying to get off it slowly, been on it so long it's hard to tell if it does anything. Not the most hip on latest crohn's breakthroughs, been reading into CBD as there are studies correlating that with the healing of inflammation, the biologicals (cimzia/humira/remicade etc) kinda scare me. P.S. I'm 29, was diagnosed with crohn's around 18-19 but had it since 12-13
@@stevensimpson9880 Go to the Paleomedicinia website. It's a clinic in Hungary that treats Crohn's with the Carnivore diet. My son, age 45, has Crohn's and has been taking Humira, which killed 5 children in Italy during the initial trials, and over 20 patients died during later trials. My son has begun the all-meat diet. Stay off all plant foods. Break your sugar addiction.
What is this guy selling? He keeps talking about change, and jumping hurdles, and getting moral support, which is fine, but evidently he's just taking drugs and manfully accepting that he's got Crohn's for life. He says his eating is not a diet but a lifestyle. Well, duh, that applies to everybody. What sort of diet? What specifically is he doing?
@@stevensimpson9880 I'm 27 and I've had Crohn's now for about a year. I use CBD and THC oil and it helps immensely for me!
THC especially helps with nausea, appetite and pain. I believe CBD is more effective on inflammation. Both together are great for Crohn's.
Been diagnosed since I was 17 which was not fun at all. I learn to live with it and eating according what my stomach could accept. Basically I eat for the sake of living. And try to manage your stress level, exercise, and get proper sleep. Forget stay up at night because it can cause more inflamation in the long run.
Im 44 and found out today... thought my life was normal as everyone else and to find out that I had this since 11 and zero support from my family unaware and explains why I always hear family and friends saying I can eat so much food and not put on weight.... I feel this feeling and understand it more after watching this.
I found out I had it when I was 35 I'm 42 now, I used to have bad cramps, diarrhea and vomiting and ignored those symptoms for two years. And then one night I was having bad gut pains, running a fever and started throwing up blood, my wife took me to the emergency room and had 2 feet of small intestine removed after a exploratory surgery. Stayed in the hospital for 16 days after waiting for my new cut to heal and for my stomach to actually take some food, I could eat like 7 potato chips and a popsicle. Got out and got started on remicade and it's kept my symptoms at bay, good luck to you and don't ignore any symptoms like I did, it almost killed me
Thank you so much for sharing your story. love your outlook! :)
Thanks for sharing your story ❤️
I have it since 2005. Thank you for sharing awareness.
Diagnosed at 11, medicated till remicade gave me psoriasis(age21), now im using 2:1 cbd/thc oil completely healed and eating everything
How do you use the oil?
Where do u get it?
Right on buddy
I believe he’s talking about the CBC/thc tinctures. I tried it but my stomach was burning up. It’s because I also have a chronic gastritis so I think the coconut extract cbd/oil didn’t settle nicely with me.
Use cooking oil lol
I caught clostridium difficile two times in the matter of a year and thought I had it a 3rd time and the test came back negative. Naturally, I was terrified cause I had gone for a year dating back to my first case of C Diff doctors didn’t know how I kept getting so sick. Months of off and on stomach pains and testing led to avail. After a colonoscopy and a endoscopy, as of a February 2020 I was diagnosed with Crohn’s disease. When I first got sick I weighed around 275, and at my lightest I weighed in at 185. It’s scary to see how quickly your weight can fluctuate.
What I wanna know is who TF disliked this video
Thank you!
My daughter is 13 and diagnosed with severe cronh's at 7 years old.
SCD diet and visbiome probiotics have done wonders !! Calprotectin was off the charts but near normal now. SCD diet is pretty easy when you get into it and you can eat lots of good stuff.
Any treatment regime you are following? My son too diagnosed with Crohns at 8 recently.
My son, now 26, was diagnosed when he was 9. He has struggled physically, mentally and with his over all health. He is 6'1 and is 103 pounds. He smokes and it does help but he is in such pain all the time. It is horrible. He also has a kidney stone and now a fistula. He can't have surgery bc he could die with the condition he is in now. It is a horrible horrible disease!
so so sorry... my daughter 27 is living with Crohn's, already have had 6ft. of intestines removed in 2019.. and wore a bag for 4 mos.. so young to go through so much.. and now suffering with healing from a recent fistula procedure.. it's sad..
@@chipnegron950 sorry to hear that, I hope she's recovering well. I had 2 feet of small intestine removed and started remicade,it helps alot. Let her know to find a diet that works, I had to remove roughage lettuce and other leafy foods. Avoid red meat.
Thank you for sharing i was diagnosed in aug 21. Crohns. Im on biologics.
I was diagnosed in 2003. I have had it 17 years and still struggle to get a working treatment.
You should get the surgery man it's a life changer
HoodHood007 - I'm finally in the start of remission. I started CBD last year and its changed my life. I was too ill to really do any surgery.
Pete ASMR what do you mean you started cc’d? Like the drops? Please answer I’m struggling
Jasmine Uni I had a hard time finding drops ended up using the full spectrum plant with thc and cbd. It took me a long time to figure out how to microdose it as an edable. Now that I'm better in gonna try to find cbd without the thc as maybe gel caps as I seen that was reported to work well with Crohns.
I was dying and desperate to find something that helped. Everyone always told me to try the stuff I really didn't want to try. But I finally have in it was that or dying at that point. I wish I had listened sooner.
I wish you the best of luck.
@@peteasmr2952 great to hear man
I catch flair ups every time weather season change
Same. I think the cold might be doing it
What is it like having crohns? I’m trying to figure out if I have it.
@@dresmith8086 you can go onto Reddit’s r/Crohn’s disease for that
@@dresmith8086 you have to go to the bathroom every second and you flair up when ever
@@juanwick1570 for pee ?
Thank you ☺️
I have been living with this disease for over thirty years. It is very difficult, and sometimes embarrassing thing to endure, I have had three bowel recessions,and various medical treatments. From steroids, to injections, I try to stay away from foods that irritate me. I now am trying Humira, I am in the hospital right now while I'm typing this
I just dont know what to do any more.
Im so sorry to hear that. Im 36 and just got diagnosed. Im floored!
How are you now?
Sam, I'm feeling much better, thanks for asking.
@@megasheiladbowers9364 SCD diet ? Try. Even one year to take results. Many people has constant remission, off medication. Try.
@@rAF-jz1yn I know you're trying to help, but you're not her doc. It doesn't get much more annoying when people suggest dietary changes to cause remission in strangers with the disease. Just food for thought. I have Crohn's myself.
I was 5-6 years old when I first got diagnosed with Crohns and today living with it for 10-11 years it has sucked so much I don’t say much to anybody about it because I get so embarrassed to even say anything because to me as a 16 year old in high school it’s that embarrassing that nobody would understand people would just look down on you because of it and I’ve been doing much better with it than I have in the past I wouldn’t last one year without being hospitalized because of a flare and now hopefully I can be in remission because of the treatment I’m on now
katty_kk I was diagnosed at 10 I've had it 17 years now. I have struggled to get a working treatment.
Me too. Been diagnosed since I was 17 and was not fun at all.
I got diagnosed when i was 3 and i am 12 now and i have 2 years already no medication anymore! There's always a bright side even tough it's far away! ( sorry for my realy bad english i am dutch)
Yall need to look into cannabis oil asap, from one crohns patient to another
Don’t be ashamed of having Crohn’s disease. It’s hard when your young but if their is anyone in your life who looks down on you for it, my advice is stay away from them. It’s not your fault.
Keeping a positive attitude and a healthy diet/exercise will keep you symptom free usually. 😁.
I consider myself very fortunate and lucky that I don't have this incurable illness. But I have a friend of mine who has this incurable illness. His name, Gabriel Sebastian Carpentieri. How long has he had this incurable illness? Well since he was 16 years old. And today, he's stuck with the illness for the rest of his life. Now he's on medication that won't cure it but it'll keep the illness under control. And I'm sincerely hoping and praying that there's a cure for the illness. How long will it take for a cure to be found for this illness? I don't know. But hope and pray and that's all.
Let’s try taking his full name out of this. Not safe. Hope your friend gets so much better. Have a great day!
Can I just say. Cannabis is perfect for pain relief. I smoke a joint and 3 tokes in my pain goes away and doesn’t come back till I sober up.
Non sustainable
Yeh man , G
I smoke cannabis to but the best way for pain relief for Crohn’s and to actually be sustainable is canabis oil in micro doses. Also needs to be a certain strain I believe.
Yes and it helps me eat and sleep too
@@Joe-tr4yl full spectrum or cbd?
I suppose I was lucky in that my first flareup occurred when I was 26. Now 72, I've had three surgeries, many times on Prednisone, Imuran, Remicade. The last was very effective but if taking it or other biologics(Humira, Cimzia, Entyvio), you don't want to stay on forever because suppressing one's immune system so forcefully will inevitably take a toll(in my case, Shingles and later, cellulitis).
good video
Is a high a/g ration in bloodwork an indication of this disease?
Anyone else have a phobia of needles, it’s one of the things stopping me from going to the doctors
The medication I use for Crohn's you can't even feel the needle. I used to hate the old shots but now with the new ones I can't feel them. If that helps any.
I have a ileostomy because of crohns it’s brutal lol 😆
got diagnosed with a functional autoimmune disease but now am experiencing joint pain with my stomach pain. I am thinking it is crohns.
Symptoms indicative of Crohns are abdominal pain, bowel urgency and frequency, blood in stool, diarrhoea, incontinence and nausea and vomiting. Joint and stomach pain alone are unlikely to be Crohns as it is a bowel disease. If you are experiencing these other symptoms, I would suggest going to a doctor and getting your inflammatory markers tested with a blood test and go from there.
Teehee Hello thank you for the info. I have been had all the above symptoms but i feel like i have been misdiagnosed since i am now expending the joint pain associated with the disease.
@@MELANIEPADRON sorry i think I've misunderstood your first comment, have you been diagnosed with Crohns? Because joint pain can be a symptom or a side effect of medication, its just not as common as stomach pain and the bowel symptoms.
I’m 13 I’ve been diagnosed
I feel you buddy keep pushing use vitamins and Trumeric and probiotics for you're stomach. May jesus be with you
@@jesuswillrise9359 thanks man
@@hoodhood007-4 I got uncle Matt's Turmeric & probiotics orange juice from dollar store try get that it works magic. and Vinegar with the Mother helps and olive oil.
@@jesuswillrise9359 thanks bro I will
I was diagnosed with Crohn’s when I was 11
This guy's issues are beyond just Crohn's
How so just curious what you see?
You can hear it in his voice (the way he talks)
Ten minutes of nothing
9 months of nothing
You must be hearing impaired then
@@faisalalotaibi1512 God! Savage man 😅