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It's World IBD Day 2024! 💜
Gemma
Community Manager Posts: 697 Incredible Poster
We’re shining a light on IBD this World IBD Day. 💜
IBD stands for Inflammatory Bowel Disease - a group of conditions characterised by chronic inflammation of the digestive system. The two most common types are Crohn’s Disease and Ulcerative Colitis (UC).
In the UK, 1 in 123 people have Crohn’s or Colitis - that’s more than 500,000 people.
In this post, Ciaran (27) shares his experiences of being diagnosed and living with IBD as a young person. Through sharing his story, he hopes to raise awareness and support others battling invisible illnesses. 💪💜
You can read Ciaran’s full article here. ✨
We'd also recommend checking out Crohn's & Colitis UK for accessible info, peer support, and helpline services.
Alt text spoilered:
IBD stands for Inflammatory Bowel Disease - a group of conditions characterised by chronic inflammation of the digestive system. The two most common types are Crohn’s Disease and Ulcerative Colitis (UC).
In the UK, 1 in 123 people have Crohn’s or Colitis - that’s more than 500,000 people.
In this post, Ciaran (27) shares his experiences of being diagnosed and living with IBD as a young person. Through sharing his story, he hopes to raise awareness and support others battling invisible illnesses. 💪💜
You can read Ciaran’s full article here. ✨
We'd also recommend checking out Crohn's & Colitis UK for accessible info, peer support, and helpline services.
Alt text spoilered:
Image 1:
The image is titled, 'Living with Ulcerative Colitis' with subtext, 'Ciaran (27) discusses his story being diagnosed with UC (a form of IBD) in 2018, aged 21.' The image is coloured purple to represent World IBD Day - there is an illustration of man on the right-hand side and there are drawings of flowers and the World IBD Day purple ribbon.'
Image 2:
Text reads, 'My symptoms started in early teenage years, but it took me a long time to get diagnosed because of my anxieties around what was going on with my body, and the absence of a support network.
When I was diagnosed I felt:
Image 3:
Text reads, 'School was really challenging – I was trying to navigate the usual difficulties of teenage years while attempting to manage and hide my symptoms from others.
However, the nature of UC and long days at school meant that it wasn’t always possible to keep my symptoms hidden – when people did draw attention to my frequent toilet use, I would try to explain away with excuses like “I was only going for a wee” or “I must have eaten something that didn’t agree with me”.'
Image 4:
Text reads, 'University was a welcome change to school – it came with a greater freedom that meant I could better hide my symptoms from others.
However, my experience was also shaped by the interaction of my condition with the HE system:
Image 5:
Text reads, 'I had one lecturer who would draw attention to anyone that left their lectures early. In order to avoid humiliation, you had to let the lecturer know of your need to leave before class – in my case, trying to predict the unpredictable! How handy that would have been: at 4:20pm I will have severe cramps and need to rush to a bathroom.
Unfortunately, many things are not as accessible as they should be for people with chronic conditions, and higher education is no exception. It is far from fair, and requires a lot of emotional labour and patience, but part of life with a chronic condition involves navigating inaccessible social systems to find the best solutions for you.'
Image 6:
Text reads, 'The most challenging part for me has been dealing with unexpected flare-ups and medication that previously worked no longer doing so.
Two things have helped me become more comfortable with this uncertainty:
(1) Appreciating that uncertainty is a natural part of life by working with an IBD specialist psychologist
(2) Better understanding treatment options by building a relationship and communicating more with my IBD nurse
Living with any chronic condition requires looking after both your physical and mental health – but this is especially important with IBD, given the intimate link between the gut and the mind!'
Image 7:
Text reads, 'Coming to terms with having a chronic condition includes acknowledging that you will sometimes require adjustments and need to advocate for yourself.
Image 8:
Text reads, 'IBD can be a tricky condition for others to appreciate.
For some, the nature of IBD puts them off trying to understand. You do not have to explain or justify your condition to anyone.
You may find that those who do try to understand often hold popular misconceptions about IBD.
I believe that only those living with IBD can truly understand what it is like. While most people are well-meaning, you don’t owe anyone explanation, and those that care about you will educate themselves.'
Image 9:
Text reads, 'What would you say to someone who has just received a diagnosis of IBD?
Image 10:
Text reads, 'What have you found has helped you through the difficult days?
Where can you go for additional support?
The image is titled, 'Living with Ulcerative Colitis' with subtext, 'Ciaran (27) discusses his story being diagnosed with UC (a form of IBD) in 2018, aged 21.' The image is coloured purple to represent World IBD Day - there is an illustration of man on the right-hand side and there are drawings of flowers and the World IBD Day purple ribbon.'
Image 2:
Text reads, 'My symptoms started in early teenage years, but it took me a long time to get diagnosed because of my anxieties around what was going on with my body, and the absence of a support network.
When I was diagnosed I felt:
- Relieved that I finally knew what I had been living with for years, and that it can be treated BUT
- I was worried about having a lifelong condition
- I felt a sense of loss around my past and future, thinking how different my life would be without UC
- I was also embarrassed at having something ‘wrong’ with me – particularly a bowel condition, given the stigma associated with that part of the body'
Image 3:
Text reads, 'School was really challenging – I was trying to navigate the usual difficulties of teenage years while attempting to manage and hide my symptoms from others.
However, the nature of UC and long days at school meant that it wasn’t always possible to keep my symptoms hidden – when people did draw attention to my frequent toilet use, I would try to explain away with excuses like “I was only going for a wee” or “I must have eaten something that didn’t agree with me”.'
Image 4:
Text reads, 'University was a welcome change to school – it came with a greater freedom that meant I could better hide my symptoms from others.
However, my experience was also shaped by the interaction of my condition with the HE system:
- Early starts are difficult for me, and there were multiple key modules with 9am lectures that I was unable to attend and that were not recorded
- Certain lecturers knew about my condition and that my absence wasn’t a lack of commitment; others didn’t know and I worried what they thought of me
- I felt like I was fighting an uphill battle, striving to compensate for my absence at lectures through high grades'
Image 5:
Text reads, 'I had one lecturer who would draw attention to anyone that left their lectures early. In order to avoid humiliation, you had to let the lecturer know of your need to leave before class – in my case, trying to predict the unpredictable! How handy that would have been: at 4:20pm I will have severe cramps and need to rush to a bathroom.
Unfortunately, many things are not as accessible as they should be for people with chronic conditions, and higher education is no exception. It is far from fair, and requires a lot of emotional labour and patience, but part of life with a chronic condition involves navigating inaccessible social systems to find the best solutions for you.'
Image 6:
Text reads, 'The most challenging part for me has been dealing with unexpected flare-ups and medication that previously worked no longer doing so.
Two things have helped me become more comfortable with this uncertainty:
(1) Appreciating that uncertainty is a natural part of life by working with an IBD specialist psychologist
(2) Better understanding treatment options by building a relationship and communicating more with my IBD nurse
Living with any chronic condition requires looking after both your physical and mental health – but this is especially important with IBD, given the intimate link between the gut and the mind!'
Image 7:
Text reads, 'Coming to terms with having a chronic condition includes acknowledging that you will sometimes require adjustments and need to advocate for yourself.
- When going somewhere new, I’ll usually research the toilet situation (there are really helpful apps for this)
- I formally disclosed my condition to my university, and used adjustments like coursework extensions when I experienced fatigue
- It has taken a long time to accept that taking sick leave is sometimes necessary for my recovery. I still struggle with feelings of guilt and inadequacy when I’m off sick. But I’ve realised that your health comes first!'
Image 8:
Text reads, 'IBD can be a tricky condition for others to appreciate.
For some, the nature of IBD puts them off trying to understand. You do not have to explain or justify your condition to anyone.
You may find that those who do try to understand often hold popular misconceptions about IBD.
- Otherwise well-meaning individuals have, confusing IBD and IBS, suggested changes to my diet to ‘fix’ my colitis (A lot of people with IBD also have IBS, but they are not the same thing!)
I believe that only those living with IBD can truly understand what it is like. While most people are well-meaning, you don’t owe anyone explanation, and those that care about you will educate themselves.'
Image 9:
Text reads, 'What would you say to someone who has just received a diagnosis of IBD?
- It will be okay. With the right treatment, it is possible to live an entirely full life with IBD
- Your condition does not define you; you are so much more. At the same time, don’t deny it as part of you; acceptance is a key part of living well with IBD
- Don’t forget about your mental health – if you feel the need to talk to a professional, ask your IBD team if they have a dedicated psychologist, speak to your GP, or self-refer to IAPT
- Surround yourself with positive people and experiences
- Go easy on yourself'
Image 10:
Text reads, 'What have you found has helped you through the difficult days?
- My partner – I am extremely lucky to have a partner who supports and encourages me in everything I do, and advocates for me when things get too much
- I make time for myself – this includes doing things I really enjoy, exercising, and resting when I need to
- Staying hopeful – remembering that there is a way through, and that things will get better
Where can you go for additional support?
- Crohn’s & Colitis UK – for accessible info, peer support and helpline services
- Your IBD team – for physical and mental health support
- Your GP
- IAPT
- The Mix’s community'
3
Comments
It sounds like a difficult condition to live with but it sounds like Ciaran has found ways to cope over the years.
Posts like this make me realise that we can’t always see what someone is going through so we should be careful in what we say and do and try to be more inclusive.
It would be good to see more posts like this.
We're really glad you found this interesting to read. You're right that we never know what someone is going through, and people can be battling things that we might not be aware of. The world is definitely heading in the right direction but there is still lots of work to be done to ensure accessibilities are in place for everyone.