World IBD Day takes place on 19 May each year and unites people worldwide in their fight against Crohn’s disease and ulcerative colitis, known as inflammatory bowel diseases.
Unfortunately, while IBD impacts an estimated 5 million people living all over the world, IBD remains largely misunderstood and lacks global awareness.
I have IBD. I have ulcerative colitis. I was diagnosed in 2009, but had lived with many strange symptoms and illnesses prior to this that are likely a result of this auto-immune disease.
Rather than answer the standard questions about IBD, Crohn’s disease, and ulcerative colitis, I thought I’d address some of the questions and comments I’ve heard from friends, strangers, and medical practitioners over the past nine years.
Use these links to learn the facts on IBD, Crohn’s disease, and ulcerative colitis:
You don’t look sick.
I hear this one all the time. I’ve heard from well-meaning people. I’ve heard it from doctors and nurse when I’ve been in hospital not even able to eat jello. Here’s the thing – I can’t help the way I look. I look younger than my years. I look good. I have good skin colour. I look fit. This is not my fault. This is simply down to genetics. It’s important to remember an old adage: Never judge a book by its cover. Same goes for me and others like me.
Well, at least you don’t have cancer.
Hmm, this is one of my favourites. I really never know what to say to this. Yes, cancer is horrible. But so is IBD and ulcerative colitis. Just like people can die from cancer – I can die from ulcerative colitis.
You can’t die from ulcerative colitis.
Yes, I can die from ulcerative colitis. I have a compromised immune system. When I catch a cold or flu, it can turn into pneumonia very easily. My ability to fight infection is compromised. I’ve taken so many noxious drugs over the years that have damaged my body’s ability to fight off viruses and bacteria.
My colon and rectum weren’t removed for fun. They were removed because I had no choice. There are no more drugs for me to take. By not having the surgery, I would have died from a perforated bowel, sepsis, or colon cancer.
People do die from ulcerative colitis. Even though I no longer have a colon and rectum, I still have ulcerative colitis. I will never be free from this disease.
Should you be eating or drinking that?
Hmm, how would you feel if I asked you the same question? Yes, I’m going to drink the Diet Coke or eat the chocolate cake. I’m human and like you, I find comfort in food. You don’t know what it’s like to have ulcerative colitis – so please do not judge me when you see me drinking a Starbucks drink or eating a hamburger. Just as you wouldn’t eat anything that you know will make you sick, the same goes for me.
There are days when I feel so terrible that the only comfort and feeling of normalcy I can find is that bowl of cereal or grilled cheese sandwich.
What you need to do is switch to a vegan or keto or paleo or low-carb or high-carb or high-protein or raw or gluten-free or dairy-free or liquid or low-protein or organic or all junk food diet.
If there was a diet that could cure me, I would follow it. Believe me, I’ve tried every diet there is. It doesn’t matter what I eat or drink. The ulcerative colitis is always there. Gluten-free. Dairy-free. Raw smoothies. Juice fast. SCD. Vegan. You name it, I’ve tried it. Most of the time I felt worse on these diets.
But, you know someone who had stomach problems and cut out gluten and meat – and now they feel so much better. Hmm, yeah, well everyone is unique. What works for one person, isn’t going to work for someone else. This is what makes auto-immune diseases like ulcerative colitis so hard to diagnose, treat, and cure. Each and every body is different.
If you’re so sick, how can you ride your bike every day?
Yes, for most of the past nine years I’ve been able to ride and race my bike. Heck, I even raced at the World Cyclocross Championships in Tabor, Czech Republic in 2010. It can seem confusing – how can a sick person still do all this exercise?
What you don’t see are the times before and after my training rides and races. The times when I couldn’t even make it to the road without shitting blood and mucus. You don’t see the roadside stops and frantic pulling off of my jersey and bib shorts in an effort not to crap myself. You don’t see me doing nothing after my ride – me lying on the couch with cramps and fear. You don’t see the missed training rides, the DNFs, and the poor results. You don’t notice the sub-par performances. You don’t remember the week-long hospital stay in Belgium in 2010 or the 12-day hospital stay here in Ottawa in 2012. You don’t see me taking steroids and other noxious drugs in an effort to find some energy and relief. You don’t see my small intestines sticking out of my abdomen. You don’t see the staples and stitches. You don’t see the scars. You don’t see me struggling to sit for more than 30 minutes. You don’t see me being afraid to eat food. You don’t see me wishing it would all end. You don’t see me giving up.
You don’t see any of this because I can’t allow this. I can’t allow ulcerative colitis to break me. So I ride my bike. So I race my bike. So I work. So I go out and live a normal healthy life. I have to do this. I have to show others living with ulcerative colitis, that it will not break them. I rely on others like me to show me that the days can and will get better. And I have to do the same.
Now that you’ve had your colon and rectum removed, you must be cured.
There is no cure for ulcerative colitis. Yes, the organs impacted by ulcerative colitis are now gone. However, there is a strong chance I’ll develop Crohn’s disease. Ulcerative colitis has gifted me with another disease called primary sclerosing cholangitis. This disease impacts my liver and liver bile ducts. I also have the genetic marker for an auto-immune disease that can cause my vertebrae to be fused, leading to paralyzation.
The thing about auto-immune disease that most people don’t understand is that you’re never free. My immune system is in overdrive and eventually some other part of me will be attacked. And no, there is nothing I can do to prevent this from happening.
Can’t you just take some drugs?
I did that. I’ve taken every drug available to me (except one, which my gastro doctor is holding back, in case I develop Crohn’s disease). I’ve taken every kind of suppository and enema. I’ve taken more steroids than I care to remember. I’ve taken noxious IV drugs called biologics. I’ve taken drugs that suppress my immune system. I’ve sat in my bathroom and injected drugs into my legs. I’ve taken it all.
Some of these drugs worked for a short time. And then my super smart and crafty immune system outsmarted these drugs. Or the drugs made me so ill that my white blood cell count was nearly wiped out. Or the drugs made me so anemic that I had to have weekly IV iron infusions.
Yes, there are some people who respond really well to a drug and manage to stay in remission. But, I’m not one of these people.
Well, I have an upset stomach sometimes and I really can’t digest corn. So I know what you’re dealing with.
Hmm, talk to me when you are going to the bathroom over 40 times a day. Talk to me when you shit blood and mucus every single time. Talk to me when you’ve crapped your pants in the grocery store. Talk to me when you’ve had to wear adult diapers. Talk to me when you’re dry heaving on the toilet and can’t even drink water. Talk to me when you lose 20 lbs in one week. Talk to me when you can’t leave your house because you’re afraid you might crap blood and mucus. Talk to me when you can’t digest jello.
Maybe it’s all in your head.
Yeah, you’re right. I made this up because I wanted the extra attention. I’m imagining everything. I wanted to have two major surgeries. I want to have a pouch attached to my abdomen.
If you’re so sick, shouldn’t you be really skinny and pale?
If you go to the gym every day shouldn’t you be ripped and super fit? If you go to yoga, shouldn’t you be super flexible? If you eat such a healthy diet, shouldn’t you have the perfect body?
I guess you must have done something to cause the ulcerative colitis.
Nope. I didn’t do anything to cause this. I likely showed the first signs of this auto-immune disease when I was a teeny tiny baby. I can promise you there was nothing I did to cause this. In fact, I follow all the healthy lifestyle rules – exercise regularly, eat a balanced diet, don’t smoke, etc. And I still got sick.
Now, I have two requests for you:
To raise awareness of IBD – please share this post with your social network, friends, colleagues, and strangers.
To help the smart doctors and researchers find better treatments for IBD – please support the Crohn’s and Colitis Foundation of Canada. My friend Marie-Josée Lafleur is raising money for the Crohn’s and Colitis Foundation of Canada via the organization’s annual fundraiser – The Gutsy Walk. Please donate and support all of us living with IBD.