I was 20 when I started to experience abdominal cramping and sudden urges to go to the bathroom. At the time, I was working an entry-level corporate job in downtown Rochester, New York. On occasion, I would be walking to work and I’d have an accident, then would return home to change. An embarrassing situation that I had to adjust to. I had no idea what was going on and neither did my doctor.
First, they thought I had diabetes; then they suspected fibromyalgia. For six months, I continued to suffer with various levels of diarrhea and bowel incontinence. I started carrying extra clothes with me everywhere, and always kept an eye out for the nearest restroom.
Finally, I was diagnosed with Crohn’s disease, which was a mixed blessing. On one hand, I was grateful to know that the problem wasn’t just in my head and there was a name for what I was encountering. On the other, I now had to determine how to get better and embrace an uncertain future for myself. At the time, there wasn’t that much information available on Crohn’s, and treatment was limited compared to today. In addition, no one was talking about this disease, so there was little public awareness of the difficulties of the diagnosis.
I worked with a gastroenterologist during a trial-and-error period with different medications, starting with Prednisone to handle my severe symptoms. On the medication, I began to feel okay, but my day-to-day life was still impacted.
Over the next decade, I tried a handful of other medications but none worked long-term. In 1995, I was having difficulty with maintaining weight, frequency of going to the bathroom, and abdominal pain, and ended up on the operating table for my first of several surgeries/procedures.
The gastroenterologist recommended removing a section of my intestine, where inflammation had caused damage. The procedure, and the medication I was prescribed following it, helped and I regained my passion for life. I could go to work, play golf, or play tennis, and have very limited issues.
Things remained relatively stable for about 10 years until the fall of 2004. While I was living in Washington, D.C., I found myself unable to eat. I couldn't pass anything through my digestive system — not even water, and my weight dropped to 90 pounds. I was not sure I would survive this round of what was being dealt my way.
Time spent in the hospital led to the discovery that the outlet out of my stomach to my intestines had completely closed off. A surgery to open it up was unsuccessful, and after a few months it was clear I would need another surgery — this time to reroute my intestines to another part of my stomach. It sounded all too unreal, and I had to come to terms with it quickly, realizing that to survive, this was mandatory.
First, I had to gain weight; I was told I was too frail to undergo the procedure.
I felt so weak during this period that it would have been easy to give up, but I made the decision to start fighting.
I received total parenteral nutrition (TPN) — where nutrients pass directly into the bloodstream through an IV. I learned how to attach the bag to my arm for the required 13-16 hours each day, and also how to inject myself with heparin to prevent blood clots.
My mind was strong even though my body was extremely weak, so I decided to go back to work. I would get dressed, attach the TPN, wear a big coat, and make my way to work to try and regain some type of normal routine and get my mind off my medical challenges. It took a little over a month to gain some weight, and I was cleared for surgery that spring.
The surgery did not go as well as planned. After the procedure, I had a new digestive problem called “dumping syndrome,” coupled with revived bowel incontinence. Those were not the only issues.
During surgery, I required a gastro nasal tube. I experienced an extreme amount of pain with it - the doctors thought I was just trying to get it removed as it was naturally uncomfortable. I tried numerous times to tell them something was wrong, but I was ignored. When it came time to remove the tube, some of my tissue had died, leaving behind a permanent dent in my nose. If that wasn’t enough, I was also left with a very noticeable scar on my stomach. The doctor ultimately admitted to malpractice, though I never pursued legal action. Anger was on the rise following this surgery and it was time to start taking my situation into my own hands.
I could have had yet another surgery to fix what was causing my dumping syndrome, but I decided to take a drastically different approach to my healing. I stopped seeing doctors, stopped taking medication, and I started my own process of trying to heal myself. I left D.C. in 2006, and went to North Carolina for a period of healing and self-discovery.
With little family, few understanding friends, and even a husband (and now ex-husband) who wouldn’t engage in trying to understand my health journey, it was a very lonely time. I learned that the more I participated in my own healing process, the better off I was.
I began to research Crohn’s and started to identify what triggered my symptoms. Stress was a major factor, so I learned that if I was walking into a potentially long-term, stressful situation I had to think twice about making that commitment. I also started monitoring the effects of different foods, as well as changes in weather including items such as temperature, humidity, and barometric pressure. I found that all of this played a role in my well-being. Yoga and meditation were also very helpful in the healing process.
In 2009, I went through a divorce and returned to D.C. in better health and with a lot more information about Crohn's disease and how to manage it. I was armed and ready to start a new chapter and adventure.
I have faced my fears and ready to tackle what comes my way. I’m 54 now, and I no longer have classic Crohn's symptoms. I do see a gastroenterologist for routine check-ups - he says it’s hard to believe I have Crohn’s, especially since it is managed without medicine.
I do have occasional challenges, but it doesn’t stop me from living my life. From skydiving, hang gliding and skiing, to attending opera and the theater, and enjoying international travel, my illness has made me embrace life more than ever. I have even taken up acting as a side interest and have been on House of Cards and Homeland, no longer worried about Crohn’s limiting my ability to do what I love.
My full-time job is in health IT, where I've made a name for myself as an executive in the industry. Recently, I started running a few times a week, and have taken up kick-boxing and yoga once again. And after more than 20 years of eating a very limited diet, I am now able to eat pretty much whatever I want — even French fries.
What’s most surprising is that I no longer feel embarrassed to talk openly about my disease. I don’t hesitate to reach out and encourage other people with Crohn’s. I tell them: The more you take control of your life, the better off you are. At least, that’s what works for me.