Crohn's & Colitis UK ( @crohnsandcolitisuk ) Instagram Profile

crohnsandcolitisuk

Crohn's & Colitis UK

Our charity is dedicated to improving the lives of everyone affected by Crohn’s Disease and Ulcerative Colitis.

  • 750 posts
  • 34.4k followers
  • 542 following

Crohn's & Colitis UK Profile Information

  • Nobody knows what they cannot see 🔸🔸🔸
I’ve written this poem for all to see 🔸
What a small part of it feels like being me 🔸
A swollen face 🔸
Oh she’s put on weight 🔸
You feeling better today 🔸
“No it’s not just gone away” 🔸
You look tired 🔸
“Thanks! The meds make me feel wired” 🔸
It’s funny, what the outside doesn’t show 🔸
When on the inside, the pain grows 🔸
Some understanding and support 🔸
Would probably stop my responses being so short 🔸
I feel like a burden all of the time 🔸
Trying to tell people “I’m doing just fine” 🔸
I don’t want to be a bother to anyone 🔸
But I feel like I am, so done 🔸
I will be strong and I will get through 🔸
The support I have, I do need from you 🔸
Your time for me is all I ask 🔸
Whilst I try and fight this mighty task 🔸
My body will change 🔸
It may look strange 🔸
But I will still be the same 🔸
With the strongest of aims 🔸
Positivity is key 🔸
For my life to be pain free 🔸
As scary as that sounds 🔸
A new way of life will be found 🔸
🔸🔸🔸
#NotEveryDisabilityisVisible. #ItTakesGuts to talk about Crohn’s and Colitis, this is Part 2 of Sarah’s story. @sarahcheer1989
  • Nobody knows what they cannot see 🔸🔸🔸
    I’ve written this poem for all to see 🔸
    What a small part of it feels like being me 🔸
    A swollen face 🔸
    Oh she’s put on weight 🔸
    You feeling better today 🔸
    “No it’s not just gone away” 🔸
    You look tired 🔸
    “Thanks! The meds make me feel wired” 🔸
    It’s funny, what the outside doesn’t show 🔸
    When on the inside, the pain grows 🔸
    Some understanding and support 🔸
    Would probably stop my responses being so short 🔸
    I feel like a burden all of the time 🔸
    Trying to tell people “I’m doing just fine” 🔸
    I don’t want to be a bother to anyone 🔸
    But I feel like I am, so done 🔸
    I will be strong and I will get through 🔸
    The support I have, I do need from you 🔸
    Your time for me is all I ask 🔸
    Whilst I try and fight this mighty task 🔸
    My body will change 🔸
    It may look strange 🔸
    But I will still be the same 🔸
    With the strongest of aims 🔸
    Positivity is key 🔸
    For my life to be pain free 🔸
    As scary as that sounds 🔸
    A new way of life will be found 🔸
    🔸🔸🔸
    #NotEveryDisabilityisVisible. #ItTakesGuts to talk about Crohn’s and Colitis, this is Part 2 of Sarah’s story. @sarahcheer1989
  •  883  33  16 hours ago

Advertisements

  • Hi, I’m Kevin and last month was the 3-year anniversary of this beautiful, squidgy pooper. 🔸
I’ve been asked, has the time flown? It really hasn't, and I’m thankful for that. By far the craziest experience. Call me crazy but I’m so grateful in some ways for it. A physical reminder to me and others of my story. My journey.
🔸
It may not have felt this way three years ago but I see having this guy as an absolute privilege and an honour. I'd never change it for the world. The education it provides, to better understand the human body and more importantly, yourself. A deeper understanding why your body behaves in certain ways, and how it can adapt to new challenges. It honestly makes you feel more at one with your body, and I’m so humbled for that opportunity.
🔸
He's also helped me better understand that everyone has their own battles they live with every day, that’s personal and just as severe to them. It doesn’t make it any less of a battle than mine or anyone else's, regardless of the circumstances. That's why it’s so important to not suffer in silence and get help. I’m never ashamed to admit I need help from time to time.
🔸
I know this little guy has had a big impact on others and has given me an opportunity to meet, and now volunteer with some incredibly strong and passionate people. He has given me a second chance. To live, to enjoy, to achieve, to go and grab every opportunity I can. To grab life again and mould it to how I want it to be, to have no regrets. To be the best and happiest version of myself possible.
I’m certainly not ready let go of this little guy yet. I’m enjoying the ride too much.
🔸
#ItTakesGuts to talk about Crohn’s and Colitis, this is Kevin’s story. @ktappern
  • Hi, I’m Kevin and last month was the 3-year anniversary of this beautiful, squidgy pooper. 🔸
    I’ve been asked, has the time flown? It really hasn't, and I’m thankful for that. By far the craziest experience. Call me crazy but I’m so grateful in some ways for it. A physical reminder to me and others of my story. My journey.
    🔸
    It may not have felt this way three years ago but I see having this guy as an absolute privilege and an honour. I'd never change it for the world. The education it provides, to better understand the human body and more importantly, yourself. A deeper understanding why your body behaves in certain ways, and how it can adapt to new challenges. It honestly makes you feel more at one with your body, and I’m so humbled for that opportunity.
    🔸
    He's also helped me better understand that everyone has their own battles they live with every day, that’s personal and just as severe to them. It doesn’t make it any less of a battle than mine or anyone else's, regardless of the circumstances. That's why it’s so important to not suffer in silence and get help. I’m never ashamed to admit I need help from time to time.
    🔸
    I know this little guy has had a big impact on others and has given me an opportunity to meet, and now volunteer with some incredibly strong and passionate people. He has given me a second chance. To live, to enjoy, to achieve, to go and grab every opportunity I can. To grab life again and mould it to how I want it to be, to have no regrets. To be the best and happiest version of myself possible.
    I’m certainly not ready let go of this little guy yet. I’m enjoying the ride too much.
    🔸
    #ItTakesGuts to talk about Crohn’s and Colitis, this is Kevin’s story. @ktappern
  •  645  36  17 April, 2019
  • Ben had recently moved down to London for work when he was diagnosed with Crohn’s at age 18. When people commented that he didn’t look healthy, he went to the doctor, who was shocked he was still standing. At 8½ stone, Ben was taken straight to hospital.
🔸
Ben didn’t take his Crohn’s seriously at first. He didn’t know much about the condition and didn’t feel like he could talk to his friends about it. He wanted to feel normal and tried to fit in with his friends but paid the consequences.
🔸
Ben worries that his condition affects how his children see him. “My son sees me as this big strong gym-going man, not someone in a toilet, crying and in pain. He shouldn’t be looking after me, I should be looking after him.”
🔸
Ben is constantly being told “but you look fine” – even by medical professionals. Statements like these make him question his own illness.
Ben is raising awareness so that people start taking this condition more seriously. He feels that having the Not Every Disability is Visible signs can help people understand that you can “look well” and still be in desperate need of an accessible toilet.
🔸
#NotEveryDisabilityisVisible
https://www.noteverydisabilityisvisible.org.uk
  • Ben had recently moved down to London for work when he was diagnosed with Crohn’s at age 18. When people commented that he didn’t look healthy, he went to the doctor, who was shocked he was still standing. At 8½ stone, Ben was taken straight to hospital.
    🔸
    Ben didn’t take his Crohn’s seriously at first. He didn’t know much about the condition and didn’t feel like he could talk to his friends about it. He wanted to feel normal and tried to fit in with his friends but paid the consequences.
    🔸
    Ben worries that his condition affects how his children see him. “My son sees me as this big strong gym-going man, not someone in a toilet, crying and in pain. He shouldn’t be looking after me, I should be looking after him.”
    🔸
    Ben is constantly being told “but you look fine” – even by medical professionals. Statements like these make him question his own illness.
    Ben is raising awareness so that people start taking this condition more seriously. He feels that having the Not Every Disability is Visible signs can help people understand that you can “look well” and still be in desperate need of an accessible toilet.
    🔸
    #NotEveryDisabilityisVisible
    https://www.noteverydisabilityisvisible.org.uk
  •  1,142  31  17 April, 2019

Advertisements

  • Let’s make the invisible, visible.
🔸
Through our #NotEveryDisabilityIsVisible campaign, we are calling on everyone to take action to change signs on accessible toilet doors to help people with invisible conditions like Crohn’s or Colitis, feel more confident using them and the public more aware of invisible disabilities. 🔸
Sign up today: https://www.noteverydisabilityisvisible.org.uk/take-action
  • Let’s make the invisible, visible.
    🔸
    Through our #NotEveryDisabilityIsVisible campaign, we are calling on everyone to take action to change signs on accessible toilet doors to help people with invisible conditions like Crohn’s or Colitis, feel more confident using them and the public more aware of invisible disabilities. 🔸
    Sign up today: https://www.noteverydisabilityisvisible.org.uk/take-action
  •  584  7  16 April, 2019
  • Because of the stigma and misunderstanding surrounding invisible conditions like Crohn’s and Colitis, thousands of people are being subjected to discrimination and stigma — just for trying to use the accessible toilets they urgently need. 🔸
This needs to stop. 🔸
Through our #NotEveryDisabilityIsVisible campaign, we are calling on everyone to take action to change signs on accessible toilet doors to help people with invisible conditions like Crohn’s or Colitis, feel more confident using them and the public more aware of invisible disabilities. 🔸
Sign up today: https://www.noteverydisabilityisvisible.org.uk
  • Because of the stigma and misunderstanding surrounding invisible conditions like Crohn’s and Colitis, thousands of people are being subjected to discrimination and stigma — just for trying to use the accessible toilets they urgently need. 🔸
    This needs to stop. 🔸
    Through our #NotEveryDisabilityIsVisible campaign, we are calling on everyone to take action to change signs on accessible toilet doors to help people with invisible conditions like Crohn’s or Colitis, feel more confident using them and the public more aware of invisible disabilities. 🔸
    Sign up today: https://www.noteverydisabilityisvisible.org.uk
  •  1,246  27  16 April, 2019
  • Hi I’m Sarah... I underwent surgery on Wednesday 10th April to have an ileostomy. I was admitted to hospital on 1st April and after a whirlwind of a stay due to being unwell ended up being told I needed emergency surgery. 🔸
During my time in hospital for the first week it left me really thinking and contemplating my 13/14 years of diagnosis. 🔸
Have I had an easy life? No
Have I ever felt like giving up? No 
Why? Being open...
🔸
Because I am honest and open about my feelings and struggles, maybe sometimes too honest for people to handle but with today’s climate people are struggling to talk about their feelings and situations which can lead detrimental effects. 🔸
Diagnosed at the tender age of 16 with a life long incurable disease was hard. Very hard. Very lonely. Very embarrassing & overall a hard thing to process. I was going through my GCSE exams at the time and having to rush out during exams with people staring at me was not my idea of fun. Having people make fun of me because they didn’t understand was the hardest part. I didn’t understand so how were they to? But even still it is not acceptable to make someone feel small because of something that is out of their control. I grew tough skin, quick!
🔸
Why? My support network!
🔸
When you’re sitting round the dining table talking about my pooing habits that’s when you know that UC rules your life but that’s when you also know you have the best support network around you who allow me to be open and honest
🔸
When your best friends feel so comfortable that they can fart and poo in front of you, you know what that makes me...proud! Proud that through this life long condition and through what my body habits are they have embraced it and rather than being disgusted, accept it! 🔸
Why? Because I choose...
🔸
Because I choose to live, I choose not to let this lifelong condition define me. I am me, yes there may be set backs and things I don’t particularly want along the way...but I choose to live and live with what god gave me. I choose to be positive. I choose to stay strong. 🔸
#ItTakesGuts to talk about Crohn’s and Colitis, this is Part 1 of Sarah’s story. @sarahcheer1989
  • Hi I’m Sarah... I underwent surgery on Wednesday 10th April to have an ileostomy. I was admitted to hospital on 1st April and after a whirlwind of a stay due to being unwell ended up being told I needed emergency surgery. 🔸
    During my time in hospital for the first week it left me really thinking and contemplating my 13/14 years of diagnosis. 🔸
    Have I had an easy life? No
    Have I ever felt like giving up? No
    Why? Being open...
    🔸
    Because I am honest and open about my feelings and struggles, maybe sometimes too honest for people to handle but with today’s climate people are struggling to talk about their feelings and situations which can lead detrimental effects. 🔸
    Diagnosed at the tender age of 16 with a life long incurable disease was hard. Very hard. Very lonely. Very embarrassing & overall a hard thing to process. I was going through my GCSE exams at the time and having to rush out during exams with people staring at me was not my idea of fun. Having people make fun of me because they didn’t understand was the hardest part. I didn’t understand so how were they to? But even still it is not acceptable to make someone feel small because of something that is out of their control. I grew tough skin, quick!
    🔸
    Why? My support network!
    🔸
    When you’re sitting round the dining table talking about my pooing habits that’s when you know that UC rules your life but that’s when you also know you have the best support network around you who allow me to be open and honest
    🔸
    When your best friends feel so comfortable that they can fart and poo in front of you, you know what that makes me...proud! Proud that through this life long condition and through what my body habits are they have embraced it and rather than being disgusted, accept it! 🔸
    Why? Because I choose...
    🔸
    Because I choose to live, I choose not to let this lifelong condition define me. I am me, yes there may be set backs and things I don’t particularly want along the way...but I choose to live and live with what god gave me. I choose to be positive. I choose to stay strong. 🔸
    #ItTakesGuts to talk about Crohn’s and Colitis, this is Part 1 of Sarah’s story. @sarahcheer1989
  •  1,024  36  14 April, 2019

Advertisements

  • What's your motivation when the struggle is real?
  • What's your motivation when the struggle is real?
  •  1,435  51  13 April, 2019
  • I’m Emily, I’m 24 and I’m currently two weeks post panproctocolectomy surgery. I was first diagnosed with Crohn's when I was 13 but had been suffering for a number of years with stomach pain, sickness, upset tummy, and weight loss (eventually hitting 4.5st) over the years it’s been more ups but a lot of downs! Flare ups and remission. May 2018 I had an emergency loop ileostomy formed, although this really improved my quality of life and definitely wasn’t as scary as I imagined, I still suffered with acne, blood loss and pain despite being on azathioprine, steroids and having tried humira, stelera, vedolizimab.
🔸
So it was decided to remove my large bowel and make my stoma permanent on the 28th March - it was a hard decision making my stoma permanent at 24 and a big surgery, but I’ve done it (even if I still can’t put my own socks on!) For anyone else feeling like they’re at their lowest just remember, it’s surprising how strong and resilient we are as a people and you will always, always, get through to the other side. 🔸
#ItTakesGuts to talk about Crohn's, this is Emily's story @emilybethelks
  • I’m Emily, I’m 24 and I’m currently two weeks post panproctocolectomy surgery. I was first diagnosed with Crohn's when I was 13 but had been suffering for a number of years with stomach pain, sickness, upset tummy, and weight loss (eventually hitting 4.5st) over the years it’s been more ups but a lot of downs! Flare ups and remission. May 2018 I had an emergency loop ileostomy formed, although this really improved my quality of life and definitely wasn’t as scary as I imagined, I still suffered with acne, blood loss and pain despite being on azathioprine, steroids and having tried humira, stelera, vedolizimab.
    🔸
    So it was decided to remove my large bowel and make my stoma permanent on the 28th March - it was a hard decision making my stoma permanent at 24 and a big surgery, but I’ve done it (even if I still can’t put my own socks on!) For anyone else feeling like they’re at their lowest just remember, it’s surprising how strong and resilient we are as a people and you will always, always, get through to the other side. 🔸
    #ItTakesGuts to talk about Crohn's, this is Emily's story @emilybethelks
  •  981  39  13 April, 2019
  • Hi, my name is Ellie. I’m 22 years old and was diagnosed with Colitis at the age of 21. 🔸
I was at University when I was diagnosed and also working for the NHS. My attendance was low and I often had time off from work due to sickness which I couldn’t explain. I had ulcers in my mouth every week, to the point where eating, drinking and speaking became incredibly painful. I experienced daily stomach pain, frequent trips to the toilet and extreme fatigue for over a year, which all went unexplained. Many visits to the GP and still nothing was explained. It affected my life in ways I couldn’t imagine - I became too tired to visit friends, struggled too much to continue with work and struggled to continue doing things I enjoyed. 🔸
I was eventually admitted to hospital in August 2017 as a result Of what turned out to be a severe flare up. I was in hospital for two weeks, but will be forever grateful because in this time I finally received my diagnosis of ulcerative colitis. Understanding my condition helped me to understand my body and accept that it is different to other people my age. 🔸
I’ve learned to love my body despite my Colitis. I understand now to make the best of my time in remission and to identify and rest during times of flare up. I still struggle, but every day it gets easier.  I am on the path to follow my dream of completing a medicine degree, back on track with my fitness, and enjoying life with my family.
🔸
I hope my story shows Colitis in its realest form and how much it can affect your life. I also hope it brings hope, that you can learn to live with Colitis and learn to enrich and fulfil your life in new ways.
🔸
#ItTakesGuts to talk about Crohn’s and Colitis... This is Ellie’s story. @ellie_broadrick
  • Hi, my name is Ellie. I’m 22 years old and was diagnosed with Colitis at the age of 21. 🔸
    I was at University when I was diagnosed and also working for the NHS. My attendance was low and I often had time off from work due to sickness which I couldn’t explain. I had ulcers in my mouth every week, to the point where eating, drinking and speaking became incredibly painful. I experienced daily stomach pain, frequent trips to the toilet and extreme fatigue for over a year, which all went unexplained. Many visits to the GP and still nothing was explained. It affected my life in ways I couldn’t imagine - I became too tired to visit friends, struggled too much to continue with work and struggled to continue doing things I enjoyed. 🔸
    I was eventually admitted to hospital in August 2017 as a result Of what turned out to be a severe flare up. I was in hospital for two weeks, but will be forever grateful because in this time I finally received my diagnosis of ulcerative colitis. Understanding my condition helped me to understand my body and accept that it is different to other people my age. 🔸
    I’ve learned to love my body despite my Colitis. I understand now to make the best of my time in remission and to identify and rest during times of flare up. I still struggle, but every day it gets easier. I am on the path to follow my dream of completing a medicine degree, back on track with my fitness, and enjoying life with my family.
    🔸
    I hope my story shows Colitis in its realest form and how much it can affect your life. I also hope it brings hope, that you can learn to live with Colitis and learn to enrich and fulfil your life in new ways.
    🔸
    #ItTakesGuts to talk about Crohn’s and Colitis... This is Ellie’s story. @ellie_broadrick
  •  654  28  12 April, 2019
  • Hi I’m Brian, I'm 56 this year. I was diagnosed with Crohn’s in 2008. When I look back l believe I've had it since I was 20. I went to the GP with severe stomach pains and was told I had rumbling appendicitis. 🔸
Through the years all stomach pain and flare ups, were put down to this. In my late 40s I was passing blood this made me seek advice and led to the diagnosis. At the same time as the diagnosis I was working 80hrs plus a week to set up and run a care farm for people with disabilities. 🔸
There have been hiccups along the way in 2015 I had a flare up and spent 7 days in hospital. I was discharged home to recover for a planned operation. At the time I was in a flat spin having been told I had a fistula between my large bowel and bladder. I had faecal matter in my urine and air in my bladder. I was facing removal of part of my bladder, an ongoing catheter, along with the removal of 12 inches of my large bowel.
🔸
I recovered well from the op and my bladder healed itself. Over the last 4 years I've been prescribed many drugs to help keep the Crohn’s in check including anzathapine, metacaptapurine, methotrexate, humira and for the last year vidilizamab infusions. 🔸
10 days ago I was rushed to A&E. I really thought I was dying. I was in such pain and being sick constantly. I spent 4 days not being able to take anything orally. After 7 days in hospital things began to settle so I was able to eat. A scan revealed that Crohn’s is active again in my large bowel and has now spread to the small bowel. I've been told by the consultants the options for me are few and if I have another flare up my only option will be more operations. 🔸
I am positive about life. I bought a 15 acre field with my family and friends and built a day service and care farm for people with learning disabilities. I think it does show that even with a disease like Crohn’s you can give something back. Pace yourself, pick your moments but dont be held back. All this is what keeps me going as well as my beautiful supportive wife.
🔸
#ItTakesGuts to talk about Crohn’s and Colitis, this is Brian’s story. @yarra_farm
  • Hi I’m Brian, I'm 56 this year. I was diagnosed with Crohn’s in 2008. When I look back l believe I've had it since I was 20. I went to the GP with severe stomach pains and was told I had rumbling appendicitis. 🔸
    Through the years all stomach pain and flare ups, were put down to this. In my late 40s I was passing blood this made me seek advice and led to the diagnosis. At the same time as the diagnosis I was working 80hrs plus a week to set up and run a care farm for people with disabilities. 🔸
    There have been hiccups along the way in 2015 I had a flare up and spent 7 days in hospital. I was discharged home to recover for a planned operation. At the time I was in a flat spin having been told I had a fistula between my large bowel and bladder. I had faecal matter in my urine and air in my bladder. I was facing removal of part of my bladder, an ongoing catheter, along with the removal of 12 inches of my large bowel.
    🔸
    I recovered well from the op and my bladder healed itself. Over the last 4 years I've been prescribed many drugs to help keep the Crohn’s in check including anzathapine, metacaptapurine, methotrexate, humira and for the last year vidilizamab infusions. 🔸
    10 days ago I was rushed to A&E. I really thought I was dying. I was in such pain and being sick constantly. I spent 4 days not being able to take anything orally. After 7 days in hospital things began to settle so I was able to eat. A scan revealed that Crohn’s is active again in my large bowel and has now spread to the small bowel. I've been told by the consultants the options for me are few and if I have another flare up my only option will be more operations. 🔸
    I am positive about life. I bought a 15 acre field with my family and friends and built a day service and care farm for people with learning disabilities. I think it does show that even with a disease like Crohn’s you can give something back. Pace yourself, pick your moments but dont be held back. All this is what keeps me going as well as my beautiful supportive wife.
    🔸
    #ItTakesGuts to talk about Crohn’s and Colitis, this is Brian’s story. @yarra_farm
  •  486  23  10 April, 2019
  • Stay strong 💪
  • Stay strong 💪
  •  2,024  78  9 April, 2019
  • Hey im Rosie, I was diagnosed with Crohn’s in 2003. 🔸
After a long year of suffering and being told I had cold sores and piles, my dentist referred me to the Oral Doctors who took a biopsy and later gave me the diagnosis of Crohns Disease. I didnt realise what long journey ahead I had. 🔸
Shortly after diagnosis I was seen under the Royal London Hospital and put onto Inflix and told I needed a Stoma. My worst fear and nightmare had come true. I was told I would have a bag for 1.5 - 2 years and now 15 years later I still have it. Unreversed and for life.
🔸
I went onto have a total colectomy in 2011 and Protectomy 2012, and for me my fight to be ‘normal’ whatever that might be had gone. Since then I have had plastic surgery and skin grafts on my bum, as the surgery from the proctectomy had not healed. Even now my bum still has a wound and I live in pain. I have tried Humira, Methotrexate, aza, and am on Stelera currently. 🔸
My fight now is to live a happy life, and to raise awareness of this awful disease and to show scars, a bag and no bum doesnt define you! 🔸
#ItTakesGuts to talk about Crohn’s and Colitis, this is Rosie’s story! @queenierqc 💜💜💜💜
  • Hey im Rosie, I was diagnosed with Crohn’s in 2003. 🔸
    After a long year of suffering and being told I had cold sores and piles, my dentist referred me to the Oral Doctors who took a biopsy and later gave me the diagnosis of Crohns Disease. I didnt realise what long journey ahead I had. 🔸
    Shortly after diagnosis I was seen under the Royal London Hospital and put onto Inflix and told I needed a Stoma. My worst fear and nightmare had come true. I was told I would have a bag for 1.5 - 2 years and now 15 years later I still have it. Unreversed and for life.
    🔸
    I went onto have a total colectomy in 2011 and Protectomy 2012, and for me my fight to be ‘normal’ whatever that might be had gone. Since then I have had plastic surgery and skin grafts on my bum, as the surgery from the proctectomy had not healed. Even now my bum still has a wound and I live in pain. I have tried Humira, Methotrexate, aza, and am on Stelera currently. 🔸
    My fight now is to live a happy life, and to raise awareness of this awful disease and to show scars, a bag and no bum doesnt define you! 🔸
    #ItTakesGuts to talk about Crohn’s and Colitis, this is Rosie’s story! @queenierqc 💜💜💜💜
  •  794  26  9 April, 2019