On Tour with Crohn's Disease | Newsbeat Documentaries
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- Опубліковано 27 лис 2017
- What's it like being in a rock band, and dealing with the symptoms of Crohn's Disease? Follow Black Foxxes frontman Mark Holley as he pushes himself further than ever.
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.
The symptoms can include some of the most unpleasant and embarrassing - persistent diarrhoea, bleeding, and excruciating stomach pains. 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 the UK, as we explore the challenges facing young people with the disease and find out if the UK is any closer to finding a solution.
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Went to Liverpool today with my husband. Had to run up the escalator to the toilet in M & S, with minutes to spare as I have Crohns. Had started to sweat and the searing pain had started as I approached the disabled and baby changing toilet. I got to the door and said to a woman who had just opened the disabled toilet door how sorry I was but that I had Crohns which was bowel disease and that I needed to use the toilet very quickly. She refused. I persisted politely but she closed the door saying she wouldn’t be long. Her baby had a nappy on, I didn’t. If I had an accident where do I wash? I’d need a change of clothes, so do I walk round the shop buying those having had an accident? Or must I never leave the house? People still don’t appreciate that you don’t need to be in a wheelchair to have a disability. I ended up in tears afterwards, explaining to an M & S employee that this was the third time this had happened in Liverpool M & S in the last few months and that there were no alternative toilets in that street. So often i feel it’s not the disease that’s the problem it’s the people you have to deal with. Disabled toilets are not for parents who don’t want to wait in line with their children and disabled toilets will be used by people who do have a disability but are not in a wheelchair. There should be Radar toilets in major stores which are there for disabled people only. Because sadly, there are people who just don’t care about other people.😞 I have to say that people from Liverpool, hands down, are the least likely to let someone go ahead of them in the toilets regardless of an explanation. My lovely husband’s family are all Liverpudlians so there is no prejudice, just my experience.
shitty 😳
I am sorry you had to deal with that individual while living with an invisible disease. I have had that experience many times. People need to be better educated with people living with a non-visible disease.
I have Crohns as well. I salute you for travelling with this disease. Strong man
When I'm going through a flare up, I love finding other Crohn's boi's and gurls, idk why it, just makes me feel in good company I guess. So keep it up my dude 👌
Usually Confused me too. I sometimes feel so alone in this struggle, seeking out others helps heaps.
I find many still think Crohns is just a bit of upset stomach/stomach ache. I even had a really good friend tell me recently, when I mentioned that I really struggle to exercise daily, that there was no excuse not to train. I’d complimented him on completing a half marathon. I didn’t say anything.... where do you start?
me too~ it's certainly not the club I planned on joining but none of us in this crap boat did, although it a slice of nice to know there are others out there that can truly relate and share the same type SH!TTY story. 😣
Keri E. Krieglmeier ‘crap boat’😆😆😆It IS a crap boat isn’t it? Keep strong. Christmas is upon us and I’m feeling anxious about the Christmas parties. Will I need the loo when I’m out? Will people think I’m a bit sad when I get tired and need to go home? What if my stomach starts to hurt? Will people push me to have something to drink? Makes you feel like an old person.
@@larahilton7417 tis the season!!
😕
I'm crying. I don't know how many years I was misdiagnosed but I was finally told I had Crohns Disease 6 years ago. Everything you guys said & feel, I have said & felt. So glad I saw this video. Thanks. 🎼💃
I have had Crohn's for 32 years and never let it restrict my life. I was a rodeo cowboy. My first surgery I was concerned on when I could ride again. After nine surgeries and numerous hospital stays now I have been in remission for 10 years. I have retired from rodeo and I now work in the electrical field. Looking back I have lived a wonderful life. From being angry with God to being a happy old man. For those who suffer with this disease my prayers are with you be strong and never quit.
Bs. You didn't have Crohn's you had IBS. 🙄
This was really helpful and real. My 15 year old son was diagnosed 8 months ago and is on the same treatment and doing well. But it's a journey and this helped me understand more of what he's going through.
Lunchlady Kim my symptoms started at 15. Doc didn't take me or my mom seriously and I never went for a second opinion. Was finally diagnosed 12 years later at 27 after A LOT of trips to the ER.
The part in the video where he has to walk off stage and where he talked about it taking control of your life, as well as the mental health issues that comes along with it, is what I can really relate to.
If I could give just two pieces of advice to your son (and my younger self, if I'm honest) is listening to your body more and exercising more.
I truly hope his treatment plan is something that will last him a very, very long time. Hugs and love. 💜
You're very brave and positive and you have such a beautiful voice, that song "take me home" is amazing! x
My son has Crohns, diagnosed at 7 years old, is now 11 years old. Great Doc, finding the right treatment is so hard and as shown is just as hard as the battle to keep it in remission. Hope you carry on winning, because you are.
I can’t even start to comprehend how your son deals with this😔. I find people think it’s just an upset stomach/stomach ache. But the tiredness is completely debilitating at times as well. Must be so difficult for a child. Sending you all my best wishes. Sincerely.
Great video x
I am 36 and have been diagnosed since I was 23.
I fall into the "always in a flare, missing most of my intestines" club. Lol
I've been having gastrointestinal issues and recently and there's a good chance that I could have Crohn's. It's nice to see someone with a presence in the public eye talking and being so open about something like Crohn's disease, it makes me feel like I'm not alone.
Maria Caputo Take care.
Never stop loving what you do I just got diagnosed with crohn's disease I lost my whole large intestine 3 years ago this disease is crazy it controls are whole body hopefully one day there will be a carrier God bless you in everything and never stop fighting
I too have crohn’s disease and it sucks 😞
Thanks for posting this! We are out here as creators and spouses and providers and we're still going strong! Don't let the disease defeat you mentally or you'll start spiraling out of control. Keep up the fight!
Bs. 🙄
@@obscurum6 Thanks for reaching out friend! Let me know if you ever need anyone to talk to.
@@DavidBaral
So you're a bot then. That figures. 😆
This is really good and an inspiration to others that they can lead a normal life and overcome challenges of Crohns and Colitis.
Its epi
If you have Crohn's you can't have a normal life or overcome it. It is an INCURABLE DEGENERATIVE DISEASE. Duh.
i fell ill at 14, diagnosed with crohns at 15 and went into remission around 16-17 and now i'm 20 and my dream is to play live music to people, great documentary showing it can be done
You're very lucky. Most of us don't go into remission at all
Reading this I've realised how easy I have crohns. I have had one flare up which I is when I got diagnosed and I have had it for 2 years now and realise how lucky I am and how much of an inspiration other people who have it worse are.
I was diagnosed February 2016 and I'm still struggling. Ugh... I'm in the US and don't have insurance so I do what I can with over the counter meds and diet. I f'ing hate this disease tbh. Glad I came across this though; makes me feel a little less alone. 💜
I have Crohn’s disease and I understand completely
I have crohns disease 9 yrs i got the humira shot 4 yrs ago now i have a heart defrillbator implant November 3rd 2017
It’s nice to find other people with crohns
Diagnosed on july, diseased part removed in august as it was such a bad case. Went undiagnosed and had a 3 month flare up which left me with a closed colon so that was fun...
Ex-army medic, so been a bit of a hit to confidence and life in general.
What a load of crap disease.
When i was 15 i was diagnosed with this disease and today i am 18 years old and my condition is becoming worse day by day
That is the reality. It gets worse, then even more worse. Don't listen to bs videos. Crohn's is a serious life threatening incurable degenerative disease. At your age your focus should be on self care. You have a long and painful road ahead of you.
Hi everyone I'm new here,trying to get some help...got in hospital 5days ago and doctor told me I have Crohn's disease.its feel such die inside...now I see people live through it,i know there still some help
Well, trying living in the US with Crohn’s and out shitty healthcare system.
I’ve been on Remicade for the last 5 years. My deductible and co-pay is $5,000 plus $7,000/yr in monthly premiums
At the start of the new year in 2019, 2020 and 2021 my employer switched heath insurance plans and I had to wait for new authorizations (required for specialty pharmaceuticals by the insurance).
This caused delays of several months each time in my treatment since they wouldn’t cover hospitals as infusion site but my town is too small to have any other options.
I now have antibodies to Remicade so the drug no longer works thanks to insurance.
I have had Crohn’s for over 30 years. Have only 6 feet of bowel left but I keep on going. Although I am good to travel with I know where all the washrooms are. First thing I look for when I go somewhere. This is so good to share experiences
I have Crohn’s disease and I’m 12❤️
Viola Tata stay strong love. xo💜
twipixie278 Thank you 💖🦄
shitty,😧
I've never meet someone with crohn's disease but me it's hard to be the only one that know what your going through I spent 72 days in the hospital 23days with out eating anything and I lost 73 pounds and I lost my large intestine I have a colostomy bag for the rest of my life have you tried Remicade Humira injections or iron infusions that might help
My daughter,, never in a million years would I have thought my daughter could have gotten so sick and died.. we could have lost her this past October. I didn't even know what crohns was... now I know, it's heartache, physical pain, absence, fear of falling behind in everything from school to sports, anger,, they raise so much money for this each year, yet it seems they are so far from fixing it.. My daughter was in perfect health only a year and half ago-2 years ago. Here is a big problem,, you get diagnosed, and they do not look into your background, genetics, antibodies, allergens, etc.. the health system does not care to research or know more,, the medical community is ignoring it,, their goal is to take care of onsett symptoms, and that's really it.
what Medication are you getting infused with? Remicade?
I’m surprised that someone who hasn’t been hospitalised is being treated with infliximab...I’ve been hospitalised countless times and have had two resections and I can’t even qualify for humira, let alone infliximab 😳 wishing you good health!
ENJOY THAT FOOD MAN...AND THE VIBES...
I've been on Remicade infusions iron infusions humaira injections nothing is working for me I'm from Michigan it'd be cool to hear from you like you said I'm alone I don't know anybody else with crohn's disease
Been living with Crohn's 25 years . Know your struggles but hey we are warriors
We control this disease it doesn't control us
Heading to the U.K. Of this covid crap ends
Gotta come see you guys
Stay strong brutha
What a load of cr*ap. 🙄
I have chrohns as well but I've learnt to accept it 🙂
But didn't you know if you were a "warrior" and "fight it" it will all just magically not bother you again. 🙄
The video is BS.
I manage my Crohn’s disease with just diet. No surgery, no drugs. I eat meat, vegetables, fruits and nothing else: No bread, no cereals, no sugar, no alcohol, no oil, no dairy, no sweets, no coffee, no soft drinks, no fried food, no chocolate, no anything processed, not even a tiny bite of these things. I do have some social problems (friends believe that my diet is weird, and sometimes I go to places where there is nothing that I can eat), but it is wonderful to be pain-free, and healthy. And my diet is not a sacrifice to me, because I got used to it and I adhere to it with religious zeal, so there is no possibility to relapse or return to an internal struggle by tasting again food that reignites an addictive behavior.
I’ve been on a low-FODMAP diet for two months now. It’s really hard when out with friends and family because I take my own food or there aren’t any options for me. But I’m holding in to my regimen and hoping I get to the point where I don’t crave the foods that are bad for me.
Nice! I've also started a whole-foods diet but I have fish and plant-based stuff as my protein instead of any meat. I also include rice, seeds and olive and rape seed oil. My symptoms have been minimal so far. I'm currently also on cortical steroids to stop the flare.
You don't have Crohn's. 🙄
Scientists.have discovered that diet has nothing to do with Crohn's. It is a disease of the immune system. Diet will not control it. Duh. 🙄
@@victorhristov9497
Crohn's is a disease of the immune system. It is not controlled by diet. You are thinking it is because of confirmation bias. 🙄
If you really had Crohn's you would know that no matter what you eat your bowel will not process it properly. People with Crohn's have malabsorption and liver problems. Seizures and skin and hair issues. Vomiting and losing teeth. The list goes on.
It sounds like you just have IBS. 🙄
"whole foods, seeds". 😆. Next you'll be saying you eat lots of salad. 😆 No one with Crohn's can eat like that FFS. 😆
I would see a allergist. Processed foods (restaurants)are full of allergens. They can elminate the cause before you have to cure the damage.
Crohn's has nothing to do with allergies and it is not possible to prevent it. Science shows it is genetic and nothing to do with allergies.
Crohn's Disease is a frameshift mutation , basically one or more nucletides are removed from a dna sequence .
Aysa A. Where do you get this info from? I'd love to read up on it and learn more.
I am currently studying molecular biology :)
Aysa A. Is there anything about it online anywhere? I'd love to learn more.
twipixie278 There is a lot of information on Wikipedia about the genetics of Crohn's. I can't guarantee its accuracy but it's a start.
Tom Alexander thank you.
Why can't we learn the name of this band? I am Crohns sufferer as well. I don't have so much blood in my stools (shit) but plenty of diarrhoea day and night with fatigue, gut pain and some puking. I have had some urgencies that has led to some embarrassing public accidents due predominately to lack if where many loos are at. I am member of C&CUK and have one of their 'Radar Keys'. This has helped enormously. I have also had gas as well thathas caused much of the pain and bloating as well. NO fun! Good luck with your treatments. I have taken one drug Entylio (spelling?) that has had some effect but not 100%. Just goes to show that us gingers (redheads) can also become beset with Crohns or IBD as well.
I have same problem
Let me know if you guys travel to the TwinCities,US.>>>>>>>>>
Diet and cannabis are the best treatment for crohns
Cannabis?? U sure??
Uma doença cruel
You do have an immunised system but it is weakened!
No the immune system is not weak its jst hyperactive
He's to handsome for this crappy , unhappy condition. 😉
Wtf. You seriously think it is okay to have Crohn's as long as you are sexually attractive? What the f**knows is wrong with you. 🙄
And he is not good looking anyway. 🙄
Ive heard no one die of crohns disease.
Lanzo Loper People die from the complications caused by Crohn's. I've almost died twice because of surgery for Crohn's disease.
Tom Alexander Absolutely. It’s lack of understanding and compassion that makes it so much harder. Best wishes.
Lanzo Loper - untrue. The side effects can kill.
Heather O'Rourke died of crohn disease
Don't be so naive. People that have AIDS have a death certificate that states death by pneumonia. Death comes from a product of the disease that you don't hear about but it still exist.