I was diagnosed on a hot, spring day in California. I was in college, and I had never been in the hospital before. I remember always having a "nervous stomach," growing up, and I was sick with "a stomach bug" more often than I was well. This particular day, I went to the emergency room with terrible stomach pain—pain so bad that my family thought something was wrong with my appendix. The ER staff took one look at my pale, thin body and admitted me immediately. The hospital staff spent the rest of that day running tests and managing my pain and low fluid levels.
Early the next morning, the on-call gastroenterologist walked in. His face was drawn, serious. I anticipated hearing words like "cancer" and "terminal."
I thought I was dying.
Instead, he said, "You have Crohn's Disease."
My first question was: "What is that?"
Second: "Am I going to die?"
The doctor looked at me, emotionless. "It’s an intestinal disease, and you will die someday but not soon. You can live a full life with Crohn’s; after all, it’s chronic."
With that being said—calmly and matter-of-factly—he left.
Later that day, some pamphlets magically appeared on the tray table next to my hospital bed. Three days after I was admitted, I was sent home—my life irrevocably changed.
Lessons from the Trenches
That was almost 15 years ago.
Honestly, I’ve never been comfortable with how the hospital treated my diagnosis. A couple of sentences and few pamphlets to explain a complicated, life-changing disease? No. Hell no. That was never enough for me.
And so, here is what I wish someone would have told me when I was newly diagnosed:
1. You are not alone!
In my first few years of navigating Crohn’s, I felt isolated, alone, and very sad. I can’t tell you how surprised and relieved I was to find out—over a year later, mind you—that I was part of a very large group of patients. According to the Crohn’s and Colitis Foundation of America (CCFA), there are 70,000 new cases of Crohn’s Disease and Ulcerative Colitis (UC) diagnosed each year. In 2011, they estimated that 1.4 million Americans have some form of Inflammatory Bowel Disease (IBD). That’s a lot of people, and that’s just in the United States. There are millions more in Canada and Europe.
Statistics are interesting, but you might be thinking: "How do I feel less alone?"
Join a support group! It really does help to talk about it. So please, don’t isolate yourself. Don’t keep your IBD a secret. Talk to people you trust and are close to, but also talk to others who have IBD. You never know who has been in your shoes or who is walking the same road you are.
Your doctor's office, local hospital, or ccfa.org can help you find an in-person group to attend, or you can join one of the many support groups on Facebook (there are dozens of them) or elsewhere online.
2. Your life is different, not over.
Something I really struggled with when first diagnosed was this feeling of "my life is over." I mourned my old "healthy" self, and I mourned the future I was hoping to build for myself (which I realized was gone pretty quickly after diagnosis). You might do this, as well. I can’t stop you from doing this, and in a sense I don’t want to because mourning pre-diagnosis life and pre-diagnosis dreams are normal. These feelings of sadness about "what could have been, but never will be" will pop up at weird moments, and that’s okay—to an extent. For me, these feelings hit most when I’m around other people my age with very successful careers. My dreams of a fast-paced, high-stress career in event planning changed when I discovered my number one Crohn’s trigger is stress. Consequently, I’ve had to "settle" for slower-paced, less stressful jobs.
When these feelings of "my life is over" pop up just remember:
- Your life is different.
- You are different.
- You are not broken!
I can’t tell you how many people I’ve met with IBD, myself included, who sometimes feel broken, worthless, unlovable—pick a negative word.
This is your ugly voice talking.
The ugly voice lies.
Let’s reframe all of this. Instead of broken, you are hand-crafted and one-of-a-kind. Your worth may not be traditional, but that’s okay. If you bake a mean cake, you have worth because no one is ever going to bake exactly like you.
As for unlovable, do me a favor. Open a note on your phone or pull out a pad of paper. Write down all of the names of the people who loved you before IBD, who visited you in the hospital, and who haven’t left your life after IBD. These people love you.
3. Your IBD is going to teach you.
Living with a chronic illness is going to teach you how strong you really are. It’s also going to teach you who is worth your time.
I mentioned I got diagnosed in college. The timing of my diagnosis means that I have been in dating relationships with IBD. Yes, you can have a perfectly healthy, romantic relationship. It might take a little longer to find your right person, but it is possible. Your IBD is going to be an excellent test for this. If someone, romantic or otherwise, can’t learn to handle something that you handle every single day, then they don’t belong in your life. It’s also going to teach patience—patience with yourself, patience with others, and patience with your body’s reactions to food and to stress.
4. It might take a while to get your treatment sorted out.
It took many years of trial and error with my medications to get to where I am today. My journey is far from over, but right now I’m symptom-free, and that’s good enough for me. It might take your doctor a few attempts to get your treatment correct. And, sometimes, part of that treatment might include surgery—as it did with me.
Yes, I said the "S" word, and yes, it’s scary. It terrified me to the point that I was in denial about needing surgery and ended up back in the ER needing emergency surgery instead of the heretofore planned surgery. So instead of controlling something that scared me and working through the fear, I waited until it was so bad that I had no control at all. Don’t get discouraged if this happens to you.
5. Plan ahead.
I have an emergency bag in my car. It’s not just bandages and antibiotic ointment. It’s also pads, hand sanitizer, toilet paper and wipes, toilet seat covers (you can get them online), and other things that make a bathroom emergency tolerable. You can add whatever you want—clothes, extra underwear, or even disposable underwear, for example. Make this bag really noticeable and take it everywhere. Planning ahead is especially important when eating out. If you have no control of where, or what, you will be eating, then make sure you know what your trigger foods are so that you can avoid them. If possible, eat a snack ahead of time so that you aren't overly hungry in case the menu is full of trigger foods. I've called and asked hosts about the menu, informing them of my "food difficulties." I don't ask for them to accommodate my needs, but at least that way the hosts know what is going on if they see I haven't eaten anything.
6. People will not always understand.
When I first got diagnosed, my own family didn’t even get it. They wanted so badly for me to "get better." I heard things like "This is a phase," or "It’s all in your head." They would serve me foods that I knew would trigger my symptoms, and then they would be insulted when I would refuse. Or they would say things like "You could eat it before," implying that I had suddenly become a picky eater.
I’ve also had people say things like "Have you tried this [diet, food, medicine, herbal supplement, etc.]?" or "Oh, I know someone who had that, and they did [some treatment] and now they are cured." A cure is not possible, at least at this juncture in time, and based on the medical discoveries and research to-date. Educating yourself is one of the best things that you can do for yourself. Know about your specific diagnosis and what that means. Learn what works for you and what doesn’t—including which foods you can’t have.
The biggest assumption I’ve observed is that people think Crohn's is a one-size-fits-all disease. It’s not. Be able to explain to people quickly and in an easy-to-understand way what is going on with you. Rehearse it to yourself, maybe in front of a mirror. It’s okay if it takes a few tries to get a good explanation figured out.
As I mentioned earlier, this is not a one-size-fits-all disease. It’s as unique as each person who is a part of the millions-strong IBD community. People with IBD are strong and resilient individuals. We fight for our health, and that makes us IBD warriors.