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Dee’s Story

My exocrine pancreatic insufficiency (EPI) symptoms started in my thirties with diarrhea on a daily basis and constant hunger as a result. I didn’t understand why it was happening and used anti-diarrheal medication to try to lessen symptoms.  My weight would fluctuate and because of this I had bouts of gastritis frequently.

All the physicians I saw discussed treatment for ulcers, gastritis, IBS-D and numerous diet regimens that didn’t help.  Some physicians suggested that maybe it was due to my cooking even though my husband and children certainly didn’t have these problems. As you can imagine, this was so insulting as I have always enjoyed cooking immensely. 

Throughout the years, I was always working around my symptoms of running to bathrooms, making sure I had a change of clothing, and trying to time my meals.  It was easier to not consume food so I wouldn’t have to run to the bathroom in a hurry while trying to work.  I did my best to hide all these problems.  It was extremely embarrassing to try to explain and ultimately it was a lifestyle of trying to protect my privacy from coworkers, friends etc. 

The toll of trying to live a “normal” life with these symptoms was very stressful. The stress of dealing with the symptoms and hiding my problems just created more stress. There was no diet that helped, and I tried everything physicians suggested. This lifestyle continued for decades and I was diagnosed by two different gastroenterologists with IBS-D and prescribed Lomotil and Bentyl. Four times a day that helped somewhat but never completely.  I was told numerous times that it was my “nerves” and/or that I must not be eating a healthy diet. 

One physician actually told me to just eat oatmeal every day. I knew that physician never read my file because I had allergy testing that revealed that I was allergic to oatmeal. The same physician told me that I was addicted to Lomotil and refused to prescribe it. The hunger cravings caused my weight to continue to fluctuate.

Fast forward to after I turned 66, I saw a new gastro practice after we retired. The physician assistant at the practice, had me go through another round of diagnostic testing and discovered that it was EPI.  By this time, I was fainting once a week and was told that I had cachexia, my weight had dropped to 100 lbs. even though I was eating a balanced diet. I also had numerous falls due to fainting.

The PA prescribed Zenpep, (an enzyme pill) and recommended a dosage of two 40,000 units of Zenpep before every meal.  I tried that regime and honestly didn’t know what to expect, and really struggled with trying to figure out what was enough and what was too much!  It rapidly became obvious to me that too much Zenpep was just as bad as not taking it at all!  The pain was incredible. The fear of what “might” happen was also a part of my struggle also. I started over and soon found that one Zenpep before breakfast and the same dosage before my evening meal seems to be the “sweet” spot for my body. I am so happy the Zenpep works for me, but still struggle with gastritis at times and still take Bentyl, Sucraflate to soothe my digestive tract. 

For others who are struggling, do not let EPI or gastritis discourage you. EPI is a complex problem. I am very fortunate that I have found relief, but it took more than 30 years and advocating for myself. Currently, I feel much better overall, my weight is up to 110 lbs now, and I work hard with weight training to develop muscle and am much stronger as a result. It’s truly a miracle to feel this good and have an active lifestyle. I am now able to enjoy hiking on a regular basis. I’m 67 and am the healthiest that I have ever been in my entire life! 

What has also helped me in this journey is the “Mayo Connect” program. It has been so encouraging after feeling like “I was the only person that I knew of that had this particular problem” to see others who also are living with EPI. I’m sure now that there are plenty of people much like myself that have been misdiagnosed for 30 + years. Please seek a support group so you won’t feel alone in this disease. 

The most important thing that I so want to communicate to physicians is to actually LISTEN to their patients that have these symptoms. I realize that EPI was not widely known about until early 2000‘s or so but it’s been a rough ride for the last 30 years. I truly hope that physicians will consider the possibility of EPI in their patients that have symptoms that are very similar to IBS-D, IBD, and Crohn’s.

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