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To My Doctor Who Thought Outside the Box

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A few years ago, after I was diagnosed with gastroparesis, I moved my care to a bigger hospital. I saw my attending gastroenterologist for about five minutes each visit, but most of my care was through the GI fellow, who ended up making a huge difference in my life.

From the beginning, he was kind. He treated me like an equal. He made eye contact. He saw that I was afraid and facing challenges and didn’t get annoyed with me. He gave me his cellphone number and actually talked to me outside of office hours several times. And he thought outside of the box, which changed my life.

I had an excruciating intermittent pain in my left side that could not be explained by any tests I’d had, including a full abdominal MRI. Because it couldn’t be explained, most of my doctors discounted it — they told me gastroparesis didn’t cause pain, and left it at that. Nobody ever suggested that it might have been caused by another condition altogether.

I routinely ended up lying curled in a ball, sobbing in agony as my fiancé (now my wonderful husband) looked on, helpless. At one point, when I was in the hospital, I woke up screaming in pain and was rushed to have an X-ray, which found my colon was distended but with no identifiable cause. Things went on like this for about a year, as my health continued to deteriorate because I was unable to eat.

In addition, I had been experiencing severe menstrual pain for years, which had gotten steadily worse. I had tried many treatments to try to help with my menstrual pain but nothing helped. My GI symptoms also greatly worsened during my periods, and I was usually unable to eat at all during those times. This left me unable to get ahead nutritionally because any weight I gained would generally fall off during my periods.

I have a great gynecologist now, but my previous gynecologist had gotten upset with me for repeatedly going to her, crying in agony and begging for help with the pain. She had also scared me about the surgery needed to diagnose endometriosis (she told me it was major surgery and that I “didn’t want to go down that road”), so I had stopped talking about it.

My GI fellow asked me if I had menstrual pain, and upon learning that I did, he theorized I had endometriosis, which was also affecting my bowel, causing the pain in my left side and increasing my constipation. This was completely new to me — I had never heard that endometriosis could do more than cause menstrual pain.

My GI fellow worked with my gynecologist to schedule laparoscopic surgery to see if I had endometriosis and remove any they found. My surgery took twice as long as it was supposed to because the adhesions were so extensive. It turned out that my whole abdominal cavity was full of adhesions; it was on my bladder, peritoneum and had twisted my colon. When stool passed through that part of my colon, it caused intense pain. After the surgery, my left side pain was gone. It was nothing short of miraculous. I still had all my other symptoms, but I was so grateful to have that pain gone.

This one doctor had taken me seriously, investigated and come up with an unusual theory that turned out to be true. He was my (much nicer) Dr. House.

The fellow was my doctor for the next year. He saw me through NJ tubes and multiple hospitalizations. And then, one day, I went to my appointment and he wasn’t there. I was so disappointed! He was the only reason I was staying with that GI doctor. After he left, I ended up finding a new GI at a different hospital.

I tried to track the GI fellow down because I wanted to follow him to his new practice, but the hospital either couldn’t or didn’t want to tell me where he went, and I couldn’t find a solid lead online.

I was never able to thank him and tell him how much of an impact he had in my life. I hope he knows.

Follow this journey on Jordan’s blog, Digesting the Facts.

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Lead photo by Thinkstock Images

Originally published: January 14, 2017
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