What it’s like when you’ve got Ulcerative Collitis

TL;DR – Fred Chong Rutherford talks about his perspective on Ulcerative Collitis, and how the disease helped him learn how to live.

I got diagnosed with Ulcerative Collitis in 2001, after a year of mysterious blood and weird pain. After 15 years of the disease, I’ve realized that there is nothing in life that can stop you, only things that can slow you down. Whether you keep going is up to you.

Here’s what this long essay is all about!

  • What is Ulcerative Collitis (aka the UC?)
  • Getting Diagnosed
  • Staying positive when your health is a mystery
  • Side Effects are MEH!
  • Living

What is Ulcerative Collitis (aka the UC)?

There’s two definitions of the UC to me. The first is the clinical …

“Ulcerative colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon.

Ulcerative colitis is the result of an abnormal response by your body’s immune system. Normally, the cells and proteins that make up the immune system protect you from infection. In people with IBD, however, the immune system mistakes food, bacteria, and other materials in the intestine for foreign or invading substances. When this happens, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation and ulcerations.”

from the Crohn’s and Collitis Foundatoin of America

The second is what it’s like. It’s basically this random, sometimes dibilitating, painful disease that at times, makes it feel like a ghost is squeezing your intestines.

I really hate the feeling of ghosts squeezing my intestines.

Getting Diagnosed

I’d had issues and felt pain a few times over the years. Like, as a kid, I can remember waking up in the middle of the night and feeling my intestines just squeezing down on me. When I had an attack, the cramping was unbearable, and typically woke me up. It only happened a few times, and always seemed to happen during a rainstorm. My kid brain assumed it was something about the really bad rainstorms that made it happen.

At that age, luckily, the really nasty symptoms hadn’t started yet. Like, there was no bleeding, and certainly no fear of losing control of my bowels. It was just the pain that I remember, and thankfully it was rare.

It happened a few times as I got older, but was so infrequent that I didn’t think much about it. That changed when I hit my twenties. At that point, the really nasty symptoms had appeared. Suddenly, there was blood in my stool. When it happens the first time, I immediately thought, “Oh my god, I have cancer.” Luckily, I had health insurance and found doctors that helped me figure out what was going on. My first UC doctor was a naturopath, and over the course of a few months, we looked for food allergies, symptom profiles, medications, and treatment plans. And it basically got under control.

Basically.

Because the most frustrating thing about UC (and the related condition Crohn’s Disease) is you have a diagnosis that describes your symptoms really well. Bleeding. Cramps. Pain. Inflamation, ulcers throughout your system. When things get really bad, and you start bleeding, it’s called a flare. The most dangerous part of a flare is that it could mean that your colon could be swelling, which can lead to a fatal condition called toxic megacolon.

The ulcers and system damage makes you more likely to get colon cancers. You end up taking medications to control the symptoms, but sometimes those cause their own complications. You may end up on different medicines, or end up taking additional medications to control the complications.

And for all those descriptions, and the symptoms everyone who has UC can relate to, nobody knows what causes it.

Staying positive when your health is a mystery

UC and Crohn’s are these series of symptoms, which can generally be controlled by medications, diet, stress reduction, right up until the point where it all goes out of control.

Ultimately, there is no known cause for the disease. Nobody knows what causes it. Not really. There are a lot of smart people, a few con-artists, and others, who have theories. Maybe food. Maybe infection in the past. Maybe bad bacteriological colony.

But ultimately, nobody knows.

I track my food, how often I go to the bathroom, what I’m drinking, what I’m doing, hoping to find correlations. I’ve done this for so long now that it’s second nature to me. I’ve gotten lucky, and found correlations that are mostly reliable, that help keep me away from flare ups. I learned simple things like, “if I drink a beer, I will flare up. If I eat bread, I will flare up. If I have a nectarine, I will flare up.”

People with UC make their own these discoveries, some make changes to their diet, find patterns, find a sense of normalcy, and it all works …

… right up to the point where you end up with cramps, bleeding, pain, and you have to start all over again to figure out why. With the knowledge that, really, you’re guessing about what’s going on.

Your doctor, if you’re lucky, is really good. They know the latest medications, how to help you manage symptoms, they’re good. They can recommend treatments, help you with elimination diets, help you sort it all out, but even then, they’re guessing in a lot of ways. They’re guessing with more expertise than you. But, just like you, the doctors aren’t sure what causes it.

You explain to people, “Well, it’s not really fatal.” You’re doing this partly because you want to keep a stiff upper lip. You want to be upbeat, because you’re sick of feeling down. But it can be fatal, and you know it, because you know the phrase, “toxic megacolon,” and you know the liklihood of colon cancer increases if you can’t get the flares under control.

It can also just be something you live with, for the next 40, 50, 60 years or more. You hope you have cool people around you. You hope that, oh no, you aren’t about to poop your pants. You hope that you’ll have a normal week.

Because, you remember, most likely, a normal life. One where you just sort of ate stuff, went to the bathroom a few times a day, and didn’t have all this weird pain and stomach cramps. But that normal life is gone. It kind of comes back, if you’re lucky, when you’re on the medications. But it’s never quite the same. You eventually learn to deal with it.

And you end up on a lot of medications!

Side Effects are MEH!

I had to change my medications a few times over the years. Essentially, the UC is about an overactive immune system causing inflamation. One way to deal with these are with immunosuppresents, which typically means steroids.

I’d been battling my weight since I was a kid. I was heavy when I was younger, but lost the weight trough high school and college. I used to play a lot of sports, too. Even though college, my weight would go up and down. It wasn’t until after college that I finally got a handle on it. When I got diagnosed, I was still pretty skinny.

And things were great, right up until I had to go on steroids. Every time I take them, I put on weight. And lose some more hair. It’s possible I would’ve gone bald anyway, with or without the steroids. I’m not vain. It’s just a reminder, to me, of that mystery of UC, and the different drugs I was taking.

The last fifteen years of steroids and other drugs have put a lot of puffy weight on me. I keep a food diary religiously, even noting what time I eat so I can monitor transit times. I rarely overeat. But you can’t always control what’s going on, especially if you have bad symptoms.

I wish UC and Crohn’s and everything about them was all just willpower. You’d never have pain, you’d never worry about having an accident before you got to a toilet. You’d be able to always reliably say, “I know exactly what I can eat and drink, and that knowledge means I will never have a flare up.” But it doesn’t work like that, unless you are really lucky.

I sometimes feel lucky when a flare comes on, occasionally (and lately) my appetite goes so far away that I end up losing weight (from not eating at all) even though I’m on steroids. I just try to look on the bright side. “Maybe I’ll get to be skinny from this, this time!” That’s the only theoretical benefit of the disease, is that you get to be skinny. For a fat kid, that sounds like magic! But, the steroids don’t work like that.

As a note, I don’t recommend UC or Crohn’s disease as a weight-loss plan. Because, no one looks good with toxic megacolon hanging over their head.

Living

I learned to get used to the tiny ghosts, always slightly squeezing on my colon, always giving me a low level of pain. And it changed my perspective, in a good way. I could deal with it. And I was fortunate. It wasn’t cancer, I wouldn’t have to do chemo or worry I’d die from it right away. All I had to do was keep living. It was like Gandalf said in the Lord of the Rings.

All we have to decide is what to do with the time that is given to us.

None of that changes because you have a chronic disease and some pain. You have a choice; do I get busy living or get busy dying?

Be kind and be realistic to yourself was something my first doctor told me after I was diagnosed. She meant to not despair or get too down on yourself about your health, but also to pay attention to what you do to yourself, too. With an emphasis on kindness to yourself.

And for me, it means understanding something. I could live to be over 100 years old. It’s possible right now. People in my family tend to live that long, or have the potential at least, as long as they take care of themselves. There’s also advances in medical science, too, that are extending people’s ages so far in the future. I could live long enough to see people land on Mars!

I could also die next year from toxic megacolon or unexpectedly get colon cancer.

Either way, it creates a sense of the now. To learn what you can, do what you can, do everything you can, with the time you have. Whether your life is hundreds of years or hundreds of hours long, it feels like one of the most important things about life.

Which is, ultimately, why I finally started The Help Machine. Leaving behind something that could do good in the world, far beyond me, far beyond any memory of me, is worth doing. Building your life around the principle of helping other people is worth doing, too.

I’m grateful, lucky, and incredibly blessed. I’m at the top of my field. I have the energy, and the space, and thanksfully the health, to build The Help Machine. Right now, at this moment, I’m exhausted and in pain. I’m slowed way down. But this latest bout of pain and mystery has given me perspective. I can stll do things while I’m slowed down. I can rejigger things so that things keep moving if I slow down.

And I can get lucky. I know I can get lucky, and maybe end this latest flare, and find better medications or something. But I’m not going to let it stop me. Not this time. Not again. Not ever.

That’s life. Doing what you can in the time you have.

Luckily, I have all the time I need.


Also published on Medium.

LEAVE A COMMENT