Invisible disability: Inflammatory bowel disease- BBC London
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- Опубліковано 28 чер 2022
- What's it like living with an invisible disability in London? 540,000 people have inflammatory bowel disease in the UK and more than 69,000 of them are in the capital.
Some people say the lack of toilets is the worst thing about living in the city. (Source: Crohn's & Colitis UK)
Bethany Jacobs has Crohn's disease and now lives with a permanent stoma bag. She said: "I think you do need to break down those barriers and open up these conversations where we talk about invisible illnesses such as Crohn’s disease."
Video by Gem O'Reilly
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Why does nobody talk about the JOINT PAIN???
The joint pain, the low energy that makes the most trivial tasks feel like a big deal, and the low mood. UC is like a never-ending battle, until it gets worse of course.
My daughter had a terrible time with joint pain so much that she gets bed ridden because of the pain. It’s heartbreaking 💔
In recent years, this is something which has worsened for me. I'm 30 yo, been living with colitis since late teens, and I feel like a 70 yo man! The main things which have helped me the most (joint-wise) is exercise, stretching and also powder collagen. I know the fatigue can leave you bed-bound at times, I've had my fair share of those days, but even if it means just lying down on the floor and doing arms and/or leg raises - it's better than nothing! Good luck guys 💪
For anyone with an IBD like myself. I’d highly recommended joining the crohns and colitis charity - you get a card which helps you explain York condition when you need to go in shops etc and a radar key to access public disabled toilets when required. Both very useful!
THEY STILL NOT LET U USE THE TOILET EVEN WITH THE CARD MATE.
As an Australian tourist I can vouch for the fact that are insufficient public toilets in London. It is just ridiculous.
I was diagnosed with Crohn's in March 2023. I have been told that I have to wait at least 1 year to see an IBD specialist. In the meantime, I have not received any info about diet or medication. This is Ipswitch Hospital
It’s terrible that it’s such a long process to be diagnosed, then it’s longer again to wait to be given any advice or therapy to help.
These invisible things can be significantly detrimental to our physical and emotional health, yet it’s a field lacking in specialists. Only six more months to go! Easier said than done.
But all the best for when that eventuates and I pray that it’s such a successful productive practitioner that You are looked after 💯 %
Iam fully on board with you the struggles everyday are challenging and planing a long or short travel to use toilets on the way are a must. They would also have to be clean constantly because we need to be in a hygienic environment that’s my worry or maybe just my OCD. However may god have mercy on all of us that have invisible disability and make it easy for us love you all.
I have had severe Crohn's since I was 6 months old and I am now 53, I do think that the general public are more aware of peoples situations who have Crohn's.
Growing up as a child with Crohn's back in the day was a lot tougher!
Do you have stoma? And how did you manage your symptoms for that long time?
Invisible and lonely indeed. When the word disability is used people expect to see a wheelchair, cane , oxygen tank etc but they never realize it’s just as bad especially because you don’t get the recognition, sympathy or support as other disabled people
Such a strong young lady.
I totally get this suffering from chrohn's disease and anxiety. Bless Bethany.
Let’s put a like for support - anyone of us that has even a mild case of chronic bowel irritation (Collitis etc.) - kudos to bbc for highliting this issue and million kudos to this person who chose to share her strength…
London needs more and more public toilets.
Poor girl
I have Crohn’s disease since 2019 and I’ve noticed within the last 6 months that my hands have felt very tight , sore and sometimes fall asleep overnight . I have quite a few flare ups and I’m wondering if the two are connected . Any advice ?
Totally agree with you. Should cafes and restaurant be asked to let customer use the toilets
I have ulcerative colitis how do you get access to a card?
Hi, I have IBD. I will be going to a primary care unit soon, but I'm not sure what they will say. Will I need a stoma bag for my condition?
Medication probably, I.e steriods and mesalazine.
Starts with medication like steroids and azathioprine..I'd thatvdkesnt work you will need stronger medication and immunosuppressants like methotrexate, if that fails then you will have IV drips like Infixamab or an injection pen in to your stomach called Adulimumab..The last option is surgery to have your diseased bowel removed amd then you will need a Colostomy Bag which will be reversible after about 1 year but if your unlucky like me it won't work and you will have issues but if your lucky then it will be reversed and hopefully you will be in remission and it won't come back again but there's no guarantee
i have IBD and i have a Radar key when I am out and about to get access to disabled facilities, but they are often hard to find in London. i do need to be 10/15 mins near a loo. i tend to use buses rather than the tube network, easier to get access to loos i also have a card.
Can anyone please help me to understand if I have UC or Crohn's disease or something else? I have been dealing recently with frequent bowel movements in the morning sometimes (3-6times), also having heartburn every morning and left sided abdominal pain/discomfort. My tools sometimes look like mushy pies but bright brown coloured and malabsorbed.
What could be my condition?
My blood markers all fine, except the fecal Calprotectin which was 91ug/g last time.
Thank you
Go see a gastroenterologist it will be best
ask nhs 111
Hi I am a medical scribe with over 10 years of medical experience....it sounds very possibly like IBD, ESPECIALLY with elevated fecal calprotectin! If you haven't already, go see your primary care and ask to be referred to a GI specialist so you can get a colonoscopy.
Hello guys, thanks for all the comments, I went to Hospital and I had colonoscopy. They found out I have IBS and Reflux. They prescribed me Simeticone and Omperazole, domperidone.
@@verdensrike9381 hope ur doing well. what is ur condition now.
lnflammatory bowel disease, dunbar syndrome, primary immunodeficiency, type 1 diabetic autonomic neuropathy, and having even more invisible disabilities are issues i deal with on a daily basis. being a young american adult with a normal appearance and no universal healthcare has made getting disability assistance from the federal government ludicrous. i am a registered nurse // emt with multiple bachelor's degrees and graduated among the top of my class. I want to work, but am need a pancreas transplant to do any meaningful employment. This is provided all my medical appointments do not interfere with work. A warm welcome from Hell and good luck in this unending war, everyone.
Quit coffee!!!
🙏🏻🙏🏻🙏🏻
azathioprine and vedolizumab is the only thing that gives me some quality of good life so far
U can drink coffee with Chron’s disease ? She is holding a coffee in the end ?
she no longer has it because she got surgery that removed the inflamed area
I have crohns disease and I drink cofee no problems
Food and drink can impact symptoms when in a flare, but do not cause flare ups (it's your immune system). I have Crohn's and drink coffee, alcohol, etc. no issue; but a Diet Coke will have me collapsed in pain within the hour! Everyone is different:)
I have Ulcerative Colitis and can drink coffee when not in a flare.
I think stress is worse than anything you eat or drink with this medical problem
Has anyone noticed a correlation between IBD and having a recessed jaw (which leads to reduced airway and causes a cascade of stress responses in the body)? We need to be fixing the root issue of this disease, and I think this may be a major factor.
Wtf? No try again
@@Mac_daddy23 No need to be profane..a simple no would suffice. Do you not think we need to be fixing the root cause of IBD?
No
Stress will make your body do crazy things every disease except death is reversible
no, I have UC and a well developed face. No recessions in jaw or maxilla