Always in a Rush: How GI Issues Have Affected My Quality of Life
While Fabry disease can involve life-threatening issues such as kidney failure, heart failure, and stroke, other manifestations can also have a big impact on a person’s quality of life.
According to an article I co-authored that was published in 2019 in the journal Advances in Therapy, neuropathic pain and gastrointestinal (GI) issues adversely affect many Fabry patients’ quality of life. Unfortunately, I have a lot of personal experience with GI symptoms in particular.
When I was a boy, many years before I knew I had Fabry disease, I experienced frequent gastrointestinal upset, mainly diarrhea. It was one of several reasons I missed a lot of school when I was young.
Many colloquial terms exist for this affliction, including “the runs,” “the trots,” and Montezuma’s revenge. When my parents asked me why I didn’t want to go to school on some days, I would say, “I have the runs.” That was code in my family for diarrhea. I said it often enough to make my parents suspicious, but they usually gave me the benefit of their doubt and allowed me to stay home on the days when my digestive system was in turmoil.
Luckily, my GI symptoms subsided somewhat in my teens and early 20s. I still had some issues, but I knew which foods to avoid and which medications to take to manage my symptoms.
Then, in 1983, my life changed. I started to have frequent, terrible bouts of an upset stomach and diarrhea. At the time, I was working for the McDonnell Douglas aircraft company in Saudi Arabia.
My first thought was to blame the sudden onset of symptoms on traveler’s diarrhea caused by bacteria in the food I had eaten from street vendors. Chicken shawarmas were one of my favorite foods in Saudi Arabia, long before they became more popular and readily available in the U.S. Everyone always drank bottled water, so I was more concerned about the food.
I visited the medical clinic at the compound where I lived, and the staff provided recommendations and medications to help control my intestinal issues. But my symptoms didn’t improve for many years. I had to become much more careful about what I ate and drank. Traveling both locally and abroad required extra planning. Knowing where the next bathroom was located became an important aspect of my everyday life.
Socially, my GI issues were very inconvenient and sometimes embarrassing. The following might be considered too much information, but it’s the reality for many people with Fabry disease.
After a meal, I’d often rush to the bathroom and disappear from my friends for extended periods. On bad days, I would finish up and exit the bathroom, only to return after just a few steps. I learned to check under the toilet seat at friends’ houses to ensure I didn’t leave evidence of sometimes-explosive diarrhea. I’m thankful I can now purchase small containers of Lysol spray and Poo-Pourri to carry with me. Years ago, I would search my friends’ bathroom cabinets for the spray that would hopefully make my use of their facilities less embarrassing.
When I returned to the U.S. in 1985, I visited a gastroenterologist who attempted to find the cause of my GI issues. Carrying a shiny, silver, 1-gallon paint can with me for a week to collect all my stool was an unforgettable time in my life. Although the study of its contents ruled out any absorption problems, I was prescribed colestipol, which is commonly prescribed to lower cholesterol levels, but can also treat diarrhea. The medication helped significantly for years.
My doctor and I eventually realized that the cause of my chronic GI symptoms, which resembled diarrhea-predominant irritable bowel syndrome, was Fabry disease.
Over the years, several other medications have helped me cope with these issues that severely disrupt my life. I began biweekly enzyme replacement therapy (ERT) for Fabry disease as part of a Fabrazyme (agalsidase beta) clinical trial in 2002, then continued receiving it after the U.S. Food and Drug Administration approved the ERT in 2003. My GI symptoms improved considerably within six months.
About 10 years later, I also began taking a daily probiotic. Although it helped, I can no longer take it because probiotics are not recommended for heart transplant recipients.
I have discovered what works for me and am excited to see new solutions continue to emerge. As those of us with Fabry disease are provided with more effective remedies, we may not have to always be in a rush. Meanwhile, we do the best we can.
Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Fabry disease.
Thanks again for your candid sharing ! Despite all the challenges , you kept going and that is what makes you an inspiration 🥰.
Take care , Karalee
Thank you, Karalee and Diane! I appreciate your thoughtful comments. Fortunately for me, I learned to manage my GI issues after they made life difficult for many years. Yes, I hope my story helps others.
It took courage to be so honest about these issues, but this is so very important to those going through the same things. The work you do is vital.
Thanks for the article Jerry. I can empathise with your experiences as I too have suffered many of them. The expression “when you gotta go, you gotta go!” Is so true with these fairy GI symptoms. I’ve been on ERT for about 10 years. The biggest difference to my diet was to stop eating bread. I now only experience about 5 episodes per year, normally when I relax my rules.
All the best and thanks for all you do.