December 1-7 marks the annual Crohn's and Colitis Awareness Week. Over 1.4 million Americans suffer from these diseases, together referred to as inflammatory bowel disease (IBD- VERY different than IBS- irritable bowel syndrome). While we all have different stories, there seem to be some common elements, among them being fear, embarrassment, and isolation in addition to debilitating GI issues.
To be honest, I've never shared my story before this, ever. Yes, my doctor's know the medical bit, but not the emotions. My friends might know the emotions, but I spared them the gory details. I feel compelled to share now for a few reasons. First, it is about 10 years since I was diagnosed, and I feel I have enough perspective now (finally) to look back without embarrassment and give my account. Second, I want to help someone else. As you'll read, I went about six months of having symptoms before being diagnosed. Not because I was a medical mystery, but because I was too scared and/or ashamed to ask for help and go to a doctor. I want someone to read this and see that it does get better, but you need to seek medical attention immediately! Third, I want everyone who doesn't have Crohn's and colitis to understand what it really means to have it. The pain, isolation, fear, embarrassment, etc. We all know cancer is bad. AIDS is bad. Diabetes is bad, etc. Well, so is IBD. No, we won't die of it (not 100% true unfortunately), but most don't really know what life is like with these diseases. Thus we advocate. And lastly, advocacy isn't just so others can pity me, or think I'm incredible for overcoming. It is so that others can be diagnosed faster, receive better support from loved ones, improved medical care, and increase visibility for the need for research into these diseases.
When I was 17, I was independent. Or I thought I was. I did what I wanted (though I was a very good kid), didn't ask for help, and didn't need any help. I was an optimist and prided myself on being the "easy kid". I was just happy, no matter what happened. That summer I furthered my independent by going to a college prep summer program at Brown University. It was there, when I was at the peak of my adolescent independence, that problems started.
I remember the night I first had diarrhea. To be honest, I didn't think too much of it, mostly just hoping no one could hear my issues from the other side of the bathroom wall. I chalked it up to eating something that didn't agree with me- after all, with buffet dining, I was eating everything. But it didn't really get better. I wasn't having major frequency or urgency, but I was not having any solid bowel movements. This was probably happening a few times a day. I knew it wasn't normal, but I didn't really know what to do. I didn't want to call home, when I felt so proud of myself for being away from home. I knew if I went to the student health center, that would end in a phone call home as well. I didn't tell any of my friends there, because a 17 year old doesn't strengthen friendships by talking about diarrhea. So I hid it. I figured it would pass. I was still healthy, right? Still eating, still doing everything I wanted to. How bad could it be?
The program ended and I went home. I kept up the charade. I think it was slowly getting worse, but as it was a slow decline, it didn't seem too drastic to me. A few times a day became 5, then 10. That was my normal for a while. And I still didn't mention it to anyone. I had my tricks- run water to block the sound. I remember once my mom asked me if I was having diarrhea. I just gave a vague "um, every now and then." Nothing serious of course.
And then it kept getting worse. I was having to go to the bathroom 20-30 times a day. I learned episodes usually happened in threes. Lucky for me, our hall pass system had 3 reasons- locker pass, water pass, bathroom pass. So in each class I could go three times. I'm really not sure why no one questioned whether I had a drug habit or something, but being a good student lets you skate by without having to give many explanations.
Obviously at this point I knew something was not right. It was progressing and not just a fleeting thing. But I looked for other explanations. My sister had just self-diagnosed herself with lactose intolerance. Ah, that must be it! So I cut out dairy products and took those tablets. But still the diarrhea persisted. Well, dairy can be hidden in things, it must be that, I'm just not being careful enough. I also was preoccupied with many other things at the time, it was my senior year after all and college applications weren't going to wait while I sat on the toilet.
I started having fears of having an accident. Sometimes the cramping would come on so suddenly, followed by extreme urgency. At the time I was still on my high school gymnastics team, and I was terrified of losing control of my bowels every time I flipped. I started wearing an extra pair of underpants just in case, though I doubt one more layer would've helped. Thankfully that never happened.
I was in pain the majority of the day and completely fatigued the rest of the time, but I was determined to be a normal 17 year old, so I just kept pressing on. However, it definitely wasn't normal, as I was turning down invitations for essentially any outing/social activity since it is hard to hide the constant running to a bathroom. I was isolating myself when I probably needed the support of others the most.
My sister had just come home from college for winter break and was out shopping with my mom. That is the night I first saw blood in the toilet. It terrified me. I was scared I was going to bleed out and die. I was so weak, it was difficult to stand up. My mom called to check in and I told her, just a very quick before I lost my courage "I had bloody diarrhea." They immediately came home and my mom called my uncle, who is a pediatrician. He convinced her I did not need to go to the ER, but I was quickly off to the pediatrician the next morning.
Even to the doctors, I initially downplayed my symptoms. Blood work showed I was very anemic, likely losing more blood than I was visibly seeing. It also showed very high markers of inflammation. Stool cultures didn't show any signs of infections. Everyone seemed to be suspected ulcerative colitis or Crohn's so I was off to the gastroenterologist.
Things start to blur together there. It was a mix of terror and relief. My secret was finally out and I was going to get better. The colonoscopy was truly no big deal. Everyone will say it is the prep that is bad, but for someone wtih chronic diarrhea, the prep was just like any other day. Finally with a diagnosis, I was started on a mix of Asacol, an anti-inflammatory. No change. Then I was introduced to prednisone, my best friend and worst enemy. I think it was around February, when I had my first solid bowel movement in over six months.
Unfortunately, the problems didn't end there. Feeling better was short-lived, and soon I was in the hospital and transferred to the experts at Johns Hopkins. I was on morphine for pain, along with 60 mg of IV steroids and Cipro, an antibiotic rumored to help IBD patients. Then were all the medications for the symptoms and side effects of the drugs- something to help me sleep thanks to the prednisone, anti-nausea medication, heartburn, etc.
The rest of that first year was turbulent. I was in and out of the hospital with uncontrolled flare-ups. When you go into the hospital, they typically want to allow your bowels to rest, which means you are NPO- nothing orally. That includes fluids. I would go NPO for up to three day periods, which was the max before you needed parenteral nutrition. Of course I was getting fluid through an IV, but nothing nourishing. Every morning they would weigh me, and I'd watch my weight drop. I bottomed out at 97 lbs. I remember once during an NPO period they decided I needed a barium xray, which required drinking a solution most people would gag on. I was so hungry that I LOVED it and was hoping the test didn't go well so I'd have to do another one.
The emotional side of this period was tough. I was in the hospital or recovering at home more than I was in school. Johns Hopkins is over an hour from my home, so I rarely had friends visit. Steroids turned me into a monster- I was irritable and just mean some of the time. I remember having an "accident" one night and when the nurse asked what happened, I yelled and then cried. I had also gone from a very independent person to relying on my mom, which was a tough transition. I found out I was accepted to colleges from my hospital room, and feared what life would be like away from home. When my friend's parents were buying "Best of... Colleges" my mom bought "Best of... Hospitals." I honestly had to consider the proximity of a medical center to my college in my decision process. I can also remember touring my college and having to drop out of the formal tour because I couldn't keep up due to fatigue. I looked at my mom and went "why are there so many stairs?"
As the medications began to better control the disease, the other side effects came out. In that first year I had multiple flares of arthritis in my knees, with is an extra-intestinal symptom. I had a handful of c-diff bacterial infections that landed me back in the hospital. I would have weird skin rashes. I got peripheral neuropathy in my feet from a medication, requiring me to sleep in silk socks because my feet rubbing on sheets was agonizing. I also had a detached retina, which my doctors debated whether it was due to the disease and/or steroid use.
At 17, I knew a lot about healthcare. I was taking 36 pills a day and going for routine blood tests every month. I knew that to keep me healthy I was taking pills that could cause a whole slew of issues, including blood cancers and liver disease. I knew about health insurance. This included knowing that I would always have to consider what health insurance policy I would have when looking at future jobs.
It seemed like such a success to finally get away to college, but just a few days into my orientation, I started having symptoms. I remember calling my mom in tears. But I knew I couldn't hide it anymore like I had done for so long, so I ended up in the hospital for a few days. I was amazed by the support of friends I barely knew, but didn't tell them the whole story of what IBD involved. You know, stomach issues. I left out the details.
While the first year was extremely difficult, it did get better. I still battled fatigue that limited my social life. I initially had a very limited diet, and can still remember the first time I ate salad in the dining hall after not having raw vegetables since I was diagnosed. I had to keep tabs on my medications and blood draws and get myself to doctors appointments. I was hospitalized a couple more times in college, but had a good handle on alerting my physician at the first sign of trouble.
I have been lucky to be pretty stable lately. But while I am in remission, I still have a disease. I still take a lot of medications with scary side effects, and spend time, money, and energy on other medical expenses including blood work and other periodic tests and doctor's appointments. However, the worst is the fear and not knowing when I could be sick again. In July of 2010, I was doing my first half-ironman triathlon. I had trained religiously for 20 weeks, and on the way to the race started to flare up. I was devastated. I had felt so healthy, and suddenly I wasn't. Everything I had worked so hard for was being taken away. Fortunately, with a hefty dose of steroids and a couple days of pedialyte and white rice, I got myself to the starting line and amazed myself when I crossed the finish line far exceeding my expectations. That moment is something I will remember forever. I have a disease but it is not stopping me. Granted, I know that there may be times it does. Whenever I book a trip or sign up for a race, there is a voice telling me "but what if you flare..." Whenever my stomach hurts, or I get "normal person sick" as I call it, I panic. Is this a flare? What about school? What about work? What about life? Unfortunately, stress can trigger flare ups, so they are most likely when we are least able to afford the time.
My goal is to be more forthright about my struggles. No more hiding what is happening. People think it is just a little upset stomach, or maybe worse, like food poisoning, but don't realize the implications it has on someone's life, relationships, self-confidence, etc. People need to know that we suffer, even when not having a flare. We need to demand more research funding for diagnosis, treatments, and a cure. We need to support fellow patients to help them through. We need to focus on all that we have to be proud of, instead of hiding in embarrassment. Crohn's and colitis need to become household names, even though they are as unwelcome as diseases like cancer. Awareness and advocacy can help make this happen, and help people like me keep on living our lives, prepared to handle any flare that comes our way.