I'm 28 years old and all my life I've had a sickness that is both hard to explain and embarrassing. The earliest memory I have of my life was at my 5th birthday party, cowering in the bathroom while my friends waited for me to come out. At about 18 years old, I discovered IBS and the symptoms fit, I knew that's what I had. Learning that IBS not only had no cure, but no one knew its actual cause was devastating. How can I live the rest of my life like this?
When people asked me “You say you’re sick and can’t hang out, what do you mean by sick?” I usually just answered, “I’m sick to my stomach”. Here’s what actually happens: Normally it happens early in the morning. I awake with the sudden and overwhelming urge to use the bathroom. After running to the toilet, I’m greeted by a sudden bowel movement. I would spend the next hour and a half in the bathroom. About every 10 minutes or so, I would have this horrible pain/discomfort in my “stomach.” I say stomach because I really didn’t know where it was coming from. After this pain hit, I would have another bowel movement. After about the fifth one, the movements would turn to diarrhea, getting stronger and more painful as it went on. So strong and painful I would find myself either praying or crying. After about an hour and a half of this, I would be done. At this point I’m freezing cold and exhausted, becoming useless for the rest of the day.
That wasn't the only way it would happen. Sometimes I would be out minding my own business when it would hit, rushing to a public bathroom for an hour. But the worst aspect of it is it’s related to stress as well. New things, stressful events and just the thought of doing something out of my routine would make it happen.
I missed out on a lot of living because of my condition. Jobs, hanging out with friends and exploring the world all seemed like just a dream to me. The worst part was I was unable to see a doctor about this. I made an appointment, but the morning of it I was so nervous and sick, I was tied to my bathroom, having to cancel the appointment. It was also so difficult to explain; one time I had a stomach X-ray to check for ulcers. I began to feel like people stopped believing me. Saying you’re sick once a month was OK, but having to do it three to four times a week just makes it sound like you want to stay home.
Flash forward to a few years ago. I met my wife and was instantly in love. While dating we started going on cruises together. You can imagine this wreaked havoc in my guts. She was the first person who really pushed me to do the things I only dreamed of. It was difficult but worth it. I’ve now been to almost every cruise port accessible island in the Caribbean.
She also tried to push me to see a doctor. I went to a few general practice doctors, none of whom seemed to care about finding out what was wrong. As soon as I mentioned IBS, they shrugged it off. Finally, one gave me a referral to a GI doctor. Now, I’ll admit, I waited about a year and a half before taking the referral, fearing I would be so sick that I wouldn’t be able to make it.
It was around this time that I remember my mom talking about her sister having celiac disease. After doing some research I realized that it also fit my symptoms. How could this be? For so many years I was sure it was IBS and that I had no chance of a normal life. Yet another reason I waited to see a GI doc - how could they possibly help me with something that’s incurable? Then a co-worker learned he had ulcerative colitis, most of those symptoms fit also. Now I was lost and confused.
During one of our cruises we had a nice excursion planned, a ride in an air conditioned bus with free alcohol across one of the nicer islands in the Caribbean. It was around $100 each and prepaid with no refunds. The morning we were supposed to go, I was sick and tethered to the bathroom. This was my breaking point.
I made the appointment and was determined to keep it. My appointment was set for 3:30pm, and my day was a wreck. Fortunately, the visit went well. I told the doctor my symptoms and my family history of celiac disease. It was the first time I had ever fully described my symptoms, which really lifted a weight off my shoulders. Finally, someone else knew my story.
The doctor thought testing for celiac was a good place to start, so I scheduled an upper endoscopy.
After the procedure, it took 9 days for them to call me. I answered the phone and learned that my diagnosis of celiac disease had been confirmed. After making a follow-up appointment and hanging up the phone I told my wife and broke down. Finally, I had a name for the demon I had fought all my life, and now a plan to fight it back.
That leads me to today. I sit here, finishing the last bite of some gluten-free bread my wife made, feeling good about the future. Let’s see how this goes.