Our Stories

These special people inspire us with laughter and wisdom. Read their personal stories — or share one of your own.

The search for a Diagnosis

Story Image
I worked as a lifeguard for 8 years. Every summer I would look forward to reuniting with coworkers, enjoying the sun and having unlimited time to relax in the pool on my breaks. I was captain lifeguard and I loved my job. One summer, in 2013, the summer after I graduated from college, I began having trouble at work. It started one morning when I was working my usual 9-5 shift and was supervising the swim team before the pool even opened to the public. I was the only lifeguard on duty which meant I had to remain on stand for several hours and for the seven years earlier, this was not an issue. That one morning I remember sudden panic coming over me as I realized I had to use the bathroom and could not wait until my shift was over. I had to whistle my manager over and have him supervise the pool while I ran to the bathroom. This was the start of a very long and still ongoing journey that I am struggling with today and I can say now that I cannot remember the last time I went to work and did not worry about having to use the bathroom.

Needless to say, I had to eventually quit my job as a lifeguard because I could no longer sit on stand without worrying about needing to come down. I had tests done with my doctor and nothing came back and I was told repeatedly that it was due to stress or that it was just IBS. Well, 4 and a half years later I still have no real diagnosis and I have to deal with an upset stomach every single day of my life. What people don't realize about Crohn's, Colitis, IBS and any other intestinal disorder, is that the symptoms and the struggle can be invisible to others and may seem non-existent. However, I myself, along with other people struggling, know that in fact the symptoms go way beyond the physical ones such as fatigue, diarrhea, constipation, cramps, bloating, fever, gas and other unpleasantness. It affects your mental health, your anxiety, depression, social life, self-esteem, relationships, dating-- everything. I can't remember the last time I didn't have to think about the consequences behind eating a certain meal, or needing to know exactly how long a car ride was, or where I could stop for a bathroom along the way somewhere. These anxieties turned me into someone who needed to control everything and eventually find myself spending less time with friends and going places less because I didn't want to have to inform people that I might have to leave early or find a bathroom because I might get diarrhea. I have missed so much work, made up lies and excuses just to figure out ways to manage my symptoms and my embarrassment. I would tell people that I had to throw up instead of an upset stomach because somehow it seemed less embarrassing. Eventually, about 2 years ago an MRI scan of my abdomen/chest revealed that I had gallstones which were asymptomatic at the time. The doctors eventually believed that my gallstones were most likely the reason for my diarrhea so in February of 2017 I have my gallbladder removal surgery. Here I am one year later and nothing has changed.

So far, I have had multiple MRIs, CT scans, Hida scans, endoscopies, colonoscopies, ultrasounds, stool tests, blood tests, emergency visits, gallbladder removal surgery, and various medications-- yet no diagnosis. They say its not enough to be Crohn's and its not quite Colitis so I'm somewhere in the middle. The frustration of having no diagnosis comes from my worry and anxiety about not knowing what is wrong with me and not knowing if my disorder has an end date, because I can now assume that it doesn't. I have been told to manage my diet, and exercise, but the symptoms and anxiety are just something that I have to live with. And for now it has to be enough.

I'm 26 now, and I have a full time job. I had to stay home form work one day last week, as well as today because I was worried about having symptoms at work. I am afraid to date because I fear the day I will have to tell my eventual partner that I have these annoying and frustrating symptoms that will probably affect his life in some way. I avoid long car rides if I am not the driver. and do not have control over when we can stop the car or pull over. I did not go to my best friends new years eve party yesterday because I knew if I ate the food he cooked my stomach would act up. I can't leave the house before 9am because the morning is when my stomach is at its worst and I don't want to be stranded in my car during my morning commute. These are the things that we have to deal with on a daily basis and it can be hard when other people just don't understand. I still have friends and family ask me questions like, "why aren't you eating?" or "are you sick again?" 

All I can say is that I feel I took advantage of the days when I could eat anything I wanted and not have to deal with the symptoms or think about the timing or where the nearest bathroom was. But knowing that I am not alone in this helps me a lot, especially when even the people closest to me still just don't understand what we go through day after day. 
Story Author Image

Joined Jan 2, 2018
Location: SUMMIT, New Jersey
Diagnosed: 2014