What's it like having Crohn's Disease and being in a rock band?
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- เผยแพร่เมื่อ 27 ก.ค. 2024
- What's it like being in a rock band, and dealing with the symptoms of Crohn's Disease - pain, bleeding, diarrheoa and fatigue? Follow Black Foxxes frontman Mark Holley as he pushes himself further than ever to continue doing what he loves.
There are over 90,000 young people in the UK with Crohn's disease. This number has been growing by hundreds of patients every year over the last decade. With no known cause or cure, some sufferers feel like "guinea pigs" with various treatments and side-effects being inflicted on them until their symptoms are under control. Mark's had the illness for eight years. We join him as the band play some of their biggest shows to date and record their second album.
Along the way he meets a young sufferer who has just been diagnosed, to discuss the concerns of living with Crohn’s. We also hear from one of the leading Crohn's doctors in Europe, as we explore the challenges facing young people with the disease and find out if the UK is any closer to finding a solution.
Interested in seeing more? Watch the full documentary on BBC iPlayer in the UK. www.bbc.co.uk/iplayer/episode... - เพลง
I have Crohn’s Disease and I find it so inspiring to see other people who have it carry on doing what they love in life and not letting it have control over them
same :)
same.. i op so far for me.. but still try to live life best i can :)
I have Crohn's and I love seeing this represented in the media! This is so informative to others and inspiring to those with Crohn's! Much love!
❤️
Mark = legend. All respect to you and black foxxes
I’m 55 and was diagnosed at 26 after having my 2nd child. Back then there were no treatments. I had 3 surgeries to remove parts of my intestine. I had never even heard of it before then. So glad people are talking about it and there are so many more treatments available.
U got ilieostamy bag?
I have Crohn's Disease and Ulcerative Colitis. I'm so thankful that more people are becoming aware of this. Thanks to celebrities for letting their fans know. Awareness is so important! PS. You learn to buy,"The Good Toilet Paper!"
I feel so sorry for Mark. Black foxxes are incredibly talented but it must be hard on him
I was just diagnosed last week so that made for an interesting video!
Thankyou so much for sharing this video, I can so empathise...Chrones sucks , but being creative and having a really positive outlook has helped me at my lowest times ....also the ability to laugh at one's self!😎🤣
I love this video. I relate to this very much. I found out I have crohns when I was 17 in my junior year of high school. It’s a pain in the but trust me
I've been suffering for 2 and a half years, and been diagnosed 5 months ago! Working my way through all the treatments & starting inflectra in 2 weeks. Really helpful having this in mainstream press.
People don’t realise how lucky they are Crohn’s disease UC and many other life effecting Diseases with no cures are hard to live with and painful. Hope he’s ok send my love ❤️
It’s so great seeing inspiring people with IBD in the media
Rock on, man🤟🏼
I had uc Colitis for 7 years I was in remission for a year but it came back, it’s a hard journey and I hope for better days and new Solutions to cure this disease, this was inspiring
How does he go for walks after an infliximab infusion!? I'm knackered after mine... I usually sleep for 10 - 12 hours as soon as I get home; they just drain me of energy.
Suffering from crohn's is so much more difficult than most probably assume. It's good to see someone thriving with the condition
oli will same! but then again I feel like I’m tired after everything.
I thought the same thing lol. I also couldn’t imagine doing what he does.
It's already been mentioned but the lead singer of Glassjaw, Daryl Palumbo has Crohn's and they've had to cancel multiple gigs because of it. He references his illness in some of their songs. An old quote from Daryl that resonates with me goes "I know what it's like to be alone in a hospital room. I'm just a fu*king 20 year old dork but if I can make people feel less alone, that's important."
Just like Darryl from Glassjaw :(
I have ulcerative colitis, which is similar to Crohns but effects the stomach-down. I've had it over 10yrs but only been on Infliximab treatments this last 2yrs, it is draining and I get fatigued very easily but the treatment has completely changed my quality of life.
I have had chrons for 10 years now since I was 18 I've never had something that effected me so much that I can't even live normal I always have to worry about if what I'm doing is gunna set it off . I can go to sleep fine and wake up pukeing my guts out for zero reason other than my chrons decided to flare I wish there was more treatments especially for those of use who can't afford all the healthcare luxuries that some do
Glassjaw's Daryl Palumbo too
Oh gosh. I have chrons also. When you are in a flare about the only thing you worry about is where is the nearest restroom and hope you aren't bleeding.
Ask mike mccready from Pearl Jam
My dad has crohns disease and is in a band it’s called the zoobs, he’s had it since a kid.
My boyfriend got diagnosed with Chron's when he was 8, and now he's 20. He must have two small pills every morning after breakfast and he told me that he could not eat any veggie or fruit... He is also worrying and angry most of the time, but with all of that, I don't personally feel like he is 'ill'...
Like Mark said, it affects people very differently.
I have Crohn's and it showed up right during my studies and it's now basically ruining my life. I'm 17, i want to become an aerospace engineer but I can't because Crohn won't let me study properly and that's just a huge pain in the ass.
I have Crohn’s disease and to me I just keep thinking it sucks but I’m sure me and and all the other spoonies have grown from it and are getting better
Oof. Kinda. Has Been in hospital for February and March, now I am kinda ok, but I am already feeling smt again 🙄 I hate it. I have a special diet, so many freaking pills and idk why the hell it starts again
I have crohns too and it sucks so much it ruins my life I hate it so much
I am a dietetian, and I have a lot of experience with crohn and collitis ulcerosa. And I can totally say, that the most important thing is the diet.And believe me I dont want to sound preachy, but seriously, you can massively improve your life with the correct diet. In the hospital I work in, we treat many people with crohn and collitis, and combined with other treatment it helps tremendously. But if you get treatments but you don't take the diet seriously then it can render the whole treatement useless.
So please if you have a gastrointestinal disease, than take your diet and your nutritionist or dietetian seriously.
heirhelle The trouble is, dieticians with specialisms in Crohns are exceptionally few and far between.
what black foxxes song are they playing at the start of the video?
I was diagnosed with crohns when i was 17 now i am 27..10 years pf suffering..
In my country the treatment is awful, doctors are of low caliber.. i have gotten progressively worse over the last 10 years. Lost all my muscle now my body weight is stuck between 35-40 kilos and my intestines have developed motility problems due to the prolonged inflamation over the years.
I don't think i will make it, i will either die from this disease or suicide....
pupper from joy yesss
For anyone that suffers from Crohn's disease, PLEASE try the diet called 'Breaking the vicious cycle'. I was diagnosed with Crohn's when I was 17 (6 years ago now) and no medicin helped me. I started this diet and within a week I had no more symptoms! I now have yearly check ups and there are only very small to no inflammation in my intestines(depends if I undergo a lot of stress or not) I have no pain whatsoever and other than the diet restrictions I can live my life carefree! I don't need any medicin. Honestly, give it a go, what can harm you? I do recommend communicating with your doctor about it, but I highly recommend trying this diet!!
I'm trying to get off my medicine so I have been looking at various diets that can help, what does this diet consist of? Also I'm so happy you're doing well!!!
Paige Norris
Basically it's a diet that consists of eating specific types of carbohydrates and blocking out the bad ones. It's difficult for me to explain as English is not my native language, but basically the "bad carbohydrates " fuel the bacteria that cause the inflammation of Crohn's. By cutting out the type of foods that feed them you're starving it, making the inflammation reduce. It will never truly disappear, but by eating the foods and "good carbohydrates" you can regain energy and it gets rid of the pain and severe inflammation. I've lived symptom free (aside from of course getting ill quicker due to Crohn's being an auto immune disease) ever since I started it. What I love the most is not having a foggy brain all the time :)
www.breakingtheviciouscycle.info/home/ here's a link to the official website that gives a detailed description, a list of what you can and cannot eat and even some great recipes!
that's really great but every case is different - what may work for one person won't necessarily work for someone else
Of course! But I don't see why trying to follow a diet consisting of lots of healthy vegetables could be bad for anyone to try ;)
I am on no meds, since I got my ostomy I can eat most things. It took me a year to get back juicing and being able to eat veg..
So I have just about every crohns symptom under the sun, and my gut is telling me (no pun intended) that it is crohns , I had some tests done but they didn’t find anything, if you don’t mind me asking how did you find out you have it, how long did it take to get a diagnosis…
all people with gastrointestinal problems get information about FODMAP diet, that helped me a lot!
How does he manage to go out?
intro song?
Black Foxxes ;)
I don’t have Crohn’s, but I’ve been a long time sufferer from IBS for 5 years now and it’s ruined my life
i was misdiagnosed as ibs for 11 years.. it turned out to be crohns.. that cost me a lot of bowel removal.. plus a top specialist told me there's no such thing as ibs .. it's just a term they use for unexplained symptoms.. but it's usually ulcers polyps or inflammation of the bowel.. most doctors are buscopan and fiber mad.. which often makes things worse
mike- rayner-videos sorry to hear that:( you’re not wrong there. I’ve been sent away twice now with stupid tablets which do nothing and just told to basically get on with it.
I think next time though I can get a referral to a gastro specialist because I’ve been multiple times for the same issue in a short space of time. So far I’ve only had a few blood tests and a stool test which both came back clear. I’m just worrying 24/7 about it all the time thinking that they’ve missed something because it’s almost a daily issue for me at this stage
i understand your concern my friend
3:56 sheis lying!
Why do you say that?
I have crohn’s, I’m only 12, and it took the doctors 2 years to figure it out, two years of throwing up twice a day, and being depressed about having constant stomach aches. I thought I would never get better, but now I am getting better. ❤️🩹