World IBD Day - People with IBD Share their Experiences
Happy World IBD Day!
To mark this day I wanted to reshare an article I wrote a couple of years ago where I asked some people with IBD 3 questions:
What has having IBD taught you?
What tip would you give to someone newly diagnosed with IBD?
What do you wish everyone else knew about IBD?
You’ll find the wonderful answers below which are as relevant today as they were when they were first published, but first I think its important to cover more about Inflammatory Bowel Disease. I have also shared my journey with IBD which I hope will give you an insight of what it is like living with IBD. I also hope that it will inspire other people with IBD and provide comfort and hope to those who might need it - you are not alone.
About IBD
The number of people living with Inflammatory Bowel Disease in the UK has been increasing in recent years and is now estimated to be around 500,000, which equates to around 1 in 123 people living in the UK.
Well known people with IBD include Dynamo, singer Anastasia, Sir Steve Redgrave, Sam Faiers and Louise Thompson.
There are two main types of IBD – Crohn’s Disease and Ulcerative Colitis. IBD causes the digestive system to become inflamed and symptoms include severe or chronic tummy aches, diarrhoea (which can contain blood), weight loss, fatigue, and many others.
Drug treatment options vary from steroids to immunosuppressants, but these are lifelong autoimmune conditions for which there is currently no cure.
For some, surgery to remove part of the intestines is the only option which can sometimes result in living with a colostomy bag. IBD can dramatically reduce a personal quality of life.
My Journey
IBD is a subject that is particularly important for me as I was diagnosed with Ulcerative Colitis aged 9. By 11 I was having lifesaving surgery to remove my colon which had become so inflamed that my body started to shut down. I lived with an ileostomy bag (where the end of the small intestine is pulled through the abdominal wall and a bag is worn on the outside of the body which collects the poo!) throughout my teenage years until the age of 18, when I underwent two more operations to reconnect my plumbing.
I continued to suffer with digestive problems for years, having always been told what I ate didn’t make a difference, until I discovered first-hand how life changing the right nutrition and lifestyle medicine can be for IBD. I now help people to improve their quality of life with IBD as a Qualified Nutritional Therapist. I am totally passionate about raising awareness for IBD and getting the message out there as to how important the food we eat and the way we live is, alongside the medication, to a happy life with IBD. You can read more about my story here.
So without further ado here are the answers to those questions from some really inspirational people with IBD (some of the responses are similar but I wanted to share them all with you):
Having IBD has taught me……..
Having IBD has taught me how precious life is and how important it is to live in the moment. Living with a chronic illness brings uncertainty, but I’ve learnt worrying about the future doesn’t make anything better, it just takes away today’s peace. IBD has taught me how important it is to take one day at a time. (Bryony, @bryonyehopkins, Crohn’s disease)
Hospitals and needles are not scary (Paul, diagnosed with ulcerative colitis in 1986.)
To appreciate the good days (Claire diagnosed with crohns in 2005)
One day could be amazing and the next could start a flare. No two days are the same (Leanne)
There is no such thing as normal so stop comparing yourself to others (Clarissa, 24, Diagnosed 2007, 1 resection 30cm of bowel removed)
That you cant take life for granted, no matters what age you are, you are not indestructible (Demi Jo)
To appreciate the small things in life, not taking anything for granted (Caitlin)
That small things (like walking, a good nights sleep etc) are taken for granted (Olivia, 18, symptoms since 16, diagnosed Crohn's Colitis 17)
Empathy for others, it’s not a competition, everyone is fighting their own battles, be it IBD or any other illness (Hayley, 47, UC for 15 yrs)
IBD has taught me so much. My inner strength, POSITIVITY, feeling humble, looking at life in a different way. Always be grateful. Even on bad days as the bad days teaches you so much. (Milly, Crohns for 15 years)
Having IBD has taught me is to never judge a book by its cover. So many people often say "you don't look sick to me" when I tell them I have Crohn’s Disease and that's because you can't see my condition. I've learnt to never just assume someone is healthy because they don't look sick on the outside. (Ziyad (@thegrumblinggut), Crohn’s Disease for 13 years)
Having IBD has taught me to listen to my own body when something doesn’t feel right. Sometimes I just need to sleep a couple of extra hours to be able to get through the day and that is okay, I shouldn’t feel guilty because my body is going through a lot. (Milly, Crohns)
Having IBD had taught me there is life after IBD (Mark, Age 45, Diagnosed Crohn's 2002)
It’s not the end of the world, make the most of the good days (Rebecca, 40, UC, diagnosed in 2018)
The inner strength and resilience I didn’t know I had. Also, the huge support system of friends and family I didn’t realise were there for me no matter what. (Ella, 27, newly diagnosed with Crohns, Stoma)
How precious good health is and how strong I am (Clemmie, 30, UC for 21 years, J pouch)
Tips for someone newly diagnosed with IBD………
Be proactive about your own health (Demi Jo)
You don't have to eat boring food if you have IBD (Paul, diagnosed with ulcerative colitis in 1986.)
If in any doubt about symptoms, as for help (Claire diagnosed with crohns in 2005)
I’m newly diagnosed but listening to my body seems to be the way to go (Leanne)
Listen to your body you are the expert and never be afraid to ask for help (Clarissa, 24, Diagnosed 2007, 1 resection 30cm of bowel removed)
Don't panic, yes it's serious but it's manageable and you're now a part of a big community to help you through (Olivia, 18, symptoms since 16, diagnosed Crohn's Colitis 17)
Take each day is it comes. No day is the same unless you’re in remission. Also you need to except that you have IBD and listen to your body (Milly, Crohns for 15 years)
I would also advise them to not to get their hopes up when it comes to treatment - as harsh as it may sound - but that's because there will most likely be a lot of trial and error to find the medication that works for you if any do. (Ziyad (@thegrumblinggut), Crohn’s Disease for 13 years)
Look online at support groups on Facebook for example, to find people who also suffer from IBD and to see others experiences. This really helped me to find out more about what crohns disease was and how to deal with certain aspects, such as upset stomachs, controlling anxiety and different types of medication. (Milly, Crohns)
Treatments take time to work. Expect and understand results happen in months /years, but results do happen (Mark, Age 45, Diagnosed Crohn's 2002)
Research as much as you can and don’t be scared/ashamed/embarrassed to talk about it (Rebecca, 40, UC, diagnosed in 2018)
To take each day as it comes and to tell yourself you can do it, out loud, and more than once when you feel like you can’t. Things may get worse before they get better, but you can do it. (Ella, 27, newly diagnosed with Crohns, Stoma)
Although it seems scary right now, you will be OK. Getting your medication right is so important but there are also other things you can to do help support your IBD like the food you eat and managing stress (Clemmie, 30, UC for 21 years, J pouch)
What I wish everyone knew about IBD…….
I wish people understood that it is so much more than a bowel issue. People with IBD like me live with many more life impacting symptoms, including achy joints, fatigue, sore eyes, bad skin - the list goes on. (Bryony, @bryonyehopkins, Crohn’s disease)
IBD is wildly unpredictable and doesn't just affect your bowels. (Paul, diagnosed with ulcerative colitis in 1986.)
Just because you look healthy on the outside that doesn’t mean there’s nothing wrong.
Annoys me when people say “ooh you don’t look ill” (Claire diagnosed with crohns in 2005)
It’s not bloody IBS! (Leanne)
No it isn’t like a period and doesn’t go away after a week. Everyday is different and I can be well for weeks or even years before being back in crippling pain. (Clarissa, 24, Diagnosed 2007, 1 resection 30cm of bowel removed)
It's not just dodgy bowels, it messes with every aspect of life (Olivia, 18, symptoms since 16, diagnosed Crohn's Colitis 17)
I wish people would understand that we’re not lazy! We may look fine on the outside but we’re not on the inside. Don’t judge. (Milly, Crohns for 15 years)
I wish people (who don't have IBD) would understand that IBD is not just about going to the toilet more often than normal. There are so many other things such as fatigue, nausea and pain that we have to deal with as well (Ziyad (@thegrumblinggut), Crohn’s Disease for 13 years)
That it is not just an upset stomach. It is sleepless nights tossing and turning because theres so much cramping and pain, it is constant fatigue, nausea and anxiety and it isn’t easy. Just because you can’t physically see IBD does not mean it’s not seriously impacting the person! (Milly, Crohns)
Just because I don't look sick doesn't mean I'm not (Mark, Age 45, Diagnosed Crohn's 2002)
Its not IBS (Rebecca, 40, UC, diagnosed in 2018)
It is different for everyone and not to assume my symptoms are the same as someone else’s. (Ella, 27, newly diagnosed with Crohns, Stoma)