As someone who has lived with Crohn’s disease since the 1990s, I’ve seen a lot of shit. From the profane to the mundane, if it has to do with Crohn's, it's probably happened to me. If you’re new to the Crohn’s game, you've probably got questions. So I wrote you a manual! Here are my 10 Crohn’s Commandments. This is how I feel with Crohn’s, all the shiny parts and all the dull ones. Starting with...
1) Never Trust a Fart
Recently, while sitting in my home office, I laughed—and shat my pants while on a video call. As the blood and diarrhea ran down my leg, I wondered why I thought this time would be different.
Then there are the times with Crohn’s when we poo our pants without warning or gaseous bubble. Call it anal leakage if you will, but it happens. Unless diapers are something you’re comfortable with, don’t get too attached to any cute panties.
2) Get a Second Opinion
I was misdiagnosed eight times! As a kid, I was told children didn’t get Crohn’s—that it was all in my head. I was taken to a psychiatrist and various “facilities” to check my thinking.
Doctors only know what they know. They’re human just like us. They aren’t magicians or miracle workers. They have degrees and specialties, but only know what they’ve studied and been taught.
My word to the wise: Advocate for your body and your health the way you would your child. No kids? Think of your Crohn’s disease like your one and only. Take care of and nurture it, and your body will reciprocate.
3) Don’t Invest Yourself in Convos
I never wait for the punchline because chances are, I’ll be in the bathroom by the time the story gets there. And after I get back to the room, do I ask to hear it all again or try to jump back into the conversation? No and no. Some people might view this as being “disconnected.” Those of us familiar with Crohn’s know it’s just a defense mechanism against the inevitable. Do you know how many stories I truly wanted to hear the end of, but didn’t want to make the entire room have to re-listen to it? It’s a balancing act you learn to juggle.
4) Always Bring Your Phone
Crohn’s can treat you to fun surprises, like this one: My electrolytes were out of whack and I was low in potassium—as a result, I passed out in the bathroom stall. My advice after I experienced that is to always have a way to call for help!
Even when it’s not as serious, I still need my phone to keep me busy. Maybe I’m sitting on the toilet and realize that I can’t read the label on the nearby shampoo bottle because I left my phone (and its magnifying powers) in the living room when I felt that familiar urge to go.
Either way, it’s good to have on hand.
5) Tell People You Have It
There is no reason to shame yourself for something that’s out of your control—and you never know who you can help by sharing. Many of us disclose Crohn’s the moment we meet someone for one of two reasons: Fear it will repel the other person far, far away (and better to know that now) or hope it will show us that they truly care. The fear method is usually a fail: Most of the time when you disclose this disease, the other person is clueless or misinformed about Crohn’s—but sympathetic, and this gives you the opportunity to educate them. The hope method is a win regardless, because it allows the other person to gain a deeper understanding of who we are and cultivates a safe space for communication. If we never talk, they never know.
6) Don’t Poison Yourself
Multiple tests show I am not gluten intolerant. But my body tells me otherwise when I ingest gluten. Listen to your body. It is the biggest test of them all.
At issue: Even with the advancements in medicine since my diagnosis in 1996, there is still a lack of understanding around the origin and triggers of Crohn’s. The only thing you can do is to take ownership. Accept you have it and allow it to become the single thing that makes you special and unique in the best way. Even if we could target the origin, it still will not remove the reality that we have Crohn’s disease and so do millions of others.
7) Some Sex Is a No-Go
Maybe for some, anal is OK, but so many of us with Crohn’s have hemorrhoids either internal or outside… and anal sex can cause a prolapsed rectum. Please stay safe.
8) Consider Alternative Treatment
After a decade of experiencing medication side effects, I decided to try something different. Let's just say the detox from stopping the drugs was intense. It led me to consider other options for treating my Crohn's, and that led me to advocating for medical marijuana. Some people do just fine on their meds, but if you don't, don't give up. There is life beyond the pills, needles, and machines for Crohn’s disease treatment. We are proof!
9) Appeal Insurance. Every Time.
And then there’s this. I was $100,000 in medical debt by the time I was 25 years old. My health insurance denied every claim due to age. I appealed each time I received a bill and got a lot of it waived. Hospitals have patient assistance programs—look into them! Don’t become a victim of circumstance. Again, it’s all about advocating for yourself.
Insurance companies have one job, and it’s to collect funds. But they will work with you, if you persist. Much of my 20s was spent on the phone with insurers, hospitals, and debt collectors—but ultimately, I was able to relieve some of that financial stress by staying on it, day after day. For every medical office, there is a billing department who will work with you. For every hospital, there is patient assistance program for financial aid, but you need to ask.
10) Don’t Take Shit Too Seriously
Negativity breeds stress, which is the biggest trigger next to nutrition for flares and pain. A positive mindset physically calms your body, and that helps decrease inflammation, which in turn lowers pain and other symptoms.
What you focus on is what grows: Invest in positivity, and your life will feel like a gift. Focus on crap, and your life will continue to feel like shit, especially if you have Crohn’s. How to jumpstart a positive mindset?
- View bathroom time as a break from the chaos of daily life instead of isolation.
- See bloody diarrhea as your body working for you. If it’s black, you have a problem. It’s bright red? That’s just the internal hemorrhoids saying hi.
- Think of pain and cramping as a reminder you are alive and it will pass; you are not on life support in a hospital, after all.
Remember: A Crohn’s diagnosis is not a death sentence. It’s a sentence. Period.