Today is World IBD Day!
More than 75,000 Australians have been diagnosed with IBD, with more than 5 million globally.
Inflammatory Bowel Disease (IBD) is a chronic disease, much different from Irritable Bowel Syndrome (IBS). IBD is an umbrella term for a variety of inflammatory diseases within your digestive tract, including:
- Ulcerative Colitis – sores (ulcers) forming in the large intestine and rectum causing inflammation and severe pain
- Crohn’s Disease – inflammation of the digestive tract which can spread deep into the affected areas
Alternatively, IBS is non-inflammatory and does not permanently damage the intestines, and when examined, no clinical signs of disease are present. IBS can usually be treated through diet, with a low-FODMAP food plan being the most common.
IBD is often characterised by severe diarrhoea, abdominal pain, weight loss and fatigue. It can become life-threatening, and debilitating for those who are diagnosed with it.
Daniel, a local high school teacher who was diagnosed with both Ulcerative Colitis and Crohn’s disease, spoke with us about how IBD has impacted his life.
Tell us about yourself?
“I am a 25-year-old PE and humanities teacher, I also DJ every weekend and run several venues on the side. I really love sports like soccer and snowboarding, video games, music and hanging out with my dogs and girlfriend.”
How old were you when you were diagnosed, and how did it make you feel?
“I was diagnosed at 20 but have been having symptoms from as young as 10. Doctors always passed it off as Coeliac’s disease, but I knew that this was wrong, and that there was something more severe. At 18-years-old I noticed a significant loss of weight over 2-3 months. Doctors started doing tests, and confirmed what we already knew – being that what I had was serious. I was diagnosed with both Crohn’s disease, and Ulcerative Colitis.
At this point when I was really sick with it, someone I knew passed away from Crohn’s complications… which was hard.
I got a real sense of relief when diagnosed because I finally knew what it was, and it now meant that there was a pathway to treatment. Whereas, before I was just sick and we didn’t know what to do. I was a little scared though, but generally optimistic as now I have options. But after all of that, now I’m at 70 kilos thanks to treatment.”
When did you first start showing symptoms?
“At age 10, I used to feel really sick every single day and it would last about 3 months. This repeated every year at the same time, but for longer and longer until it became permanent. That’s when I lost the weight. I had a lot of really bad symptoms, including:
- Debilitating stomach cramps (have had the ambulances called before, been to an E.R, unable to move or walk)
- Muscle weakness (like having the flu)
- Severe fatigue
- Vomiting, nausea
- Anaemia (had to have iron transfusions)
- Pre-disposed to injury (overcompensation of the back and core thanks to the chronic inflammation of my intestines)
I was also told wasn’t allowed to play sports anymore. The doctors said I was done.”
How has Crohn's disease and Ulcerative Colitis impacted your life?
“When I look at what a typical 20-something-year-old male looks like, I look very different. While everyone gained some muscle and size, I lost 20 kilos and never gained that back until very recently. It can be a big disadvantage in sports and in general as well”.
What would you want people to know about IBD?
“You can have good days; you can have bad days but you can still live a normal life.
You can still battle the pain, the symptoms, and it doesn’t really change anything if you don’t give up. It’s all about your mentality, my diagnosis defines who I am, but I don’t let it define me negatively. I make light of me having it, deal with it when it’s bad and stay thankful that it’s only Crohn’s disease and not something worse.”
What are some things you do for yourself to help (mentally and physically) if you experience a flare up?
“I try and remind myself that I may not know when it will end, but when it does I will feel fine again
I try to make sure I keep a good and healthy diet, avoiding processed foods, as well as partaking in regular exercise even when I’m not feeling the best because if I don’t eat well and exercise, my symptoms can come back.
Mentally I make sure I’m calm during a flare up, and I will play video-games, stay relaxed, and make sure I’m laying down for it. I also will call my specialist and notify them if the pain gets really bad and seek advice.”
IBD is classified as an ‘invisible illness’, what does that term mean to you?
“Just because I don’t show on the outside of my body, doesn’t mean there is something wrong. It doesn’t mean I’m not in pain, or fatigued.
Also, I feel bad, like I don’t want to go get a disabled permit but there are days when I need to go do shopping during a flare up, and that just isn’t an option and put up with the pain and walking all the way out to my car.
Even going to disabled toilets instead of other public restrooms, but some people look at you and they don’t know that I use these because I can’t wait.”
Anything else you want to add?
“Never lose hope that it’s not going to get better because it eventually will, it could be 1 year away, 5 years away, or 10 years away. Let the doctors do their thing, but don’t accept treatment that isn’t working for you, speak up and advocate for yourself too.
I want you to know that now I’m in a place where I feel fine, everything in life is great, and my Crohn’s is largely under control. I’m playing sports again, including soccer, and snowboarding. Just doing the stuff I like to do.”
If you want to find out more about inflammatory bowel disease, you can have a chat with your doctor/GP, or visit Crohn’s and Colitis Australia.
Interview by Clare, Youth Advocate