How old were you when you first had your first bout of EPI?
I was about 11.5- 12 years old when I had EPI symptoms, but I was diagnosed at the age of 28. This was when my condition has severely damaged and had to be frequently hospitalized. I am 29 years old now, taking EPI medicines daily. I have recently moved to the U.S, about 1.5 years ago and that is when I got tested for EPI. Hence, I am right now focusing on only being treated for EPI and other problems that I got due to my chronic condition which unfortunately did not get tested for the longest period.
What did you think it was initially? What were your signs and symptoms?
I suddenly lost weight and I was having severe hair loss. My doctors thought the weight loss was not of concern and my hair loss was because I was not eating good amount of nutrition. All my blood reports were normal then. (I was in India that time). My doctors assumed it was because I had a narrow stomach pipe and so I can’t digest food, or probably I just have a weak stomach.
My parents were not there with me as they were back in India. My partner had to frequently take me to emergency rooms and urgent care visits. I remember him staying up by my side all night as I was kept under observation for vomiting, bloating, loose motions, and so on. It was a very tough time for all of us. However, nothing got diagnosed until I was referred to a gastroenterologist here in California. They diagnosed my issues, and thankfully I can eat my food properly now. My doctor came in my life in the form of God as they really diagnosed my problem.
What was lifelike before your diagnosis?
Life was hell. I was always severely bloated, had vomiting, nausea, diarrhea. For me it became the new normal to live with these symptoms. I used to throw up half the food I ate – this happened many times for many years. When I was living in India, I was kept regular on antacids and at times was given some antibiotics for loose motions of vomiting. I remember there were times when after having a meal, I couldn’t get up from the floor due to severe stomach pain and bloating. Many times, my parents had to extend their hand towards me to pick me up from the chair or floor as I used to sit down in pain and cry. Also, I used to have a sore throat and cough frequently.
After I was diagnosed with EPI, I realized the reason for my sore throat was due to constant acid reflux. I used to be frequently tired and had less energy than most people. I used to spend long hours sleeping, and hence, it affected my work and studies. I could not be as productive as otherwise I would have been. Yes, these were the symptoms along with hair loss. People around me always made fun of my weak, fragile, thin hair, and of my low stamina. Due to this, for years I have suffered from confidence issues.
What did you have to do differently to work around this illness? What did you tell your social circle, and did they understand?
Before EPI, I remember missing out on lot of friends get-to-gathers, parties, meet-ups, and so on. Some folks used to tell me – you are always ill, we are tired of your illness, and so on. This was typically between the age of 19-27.
After my diagnosis, some of my friends were very supportive of this, however, some were not. I have accepted the fact that I am suffering from EPI, and I want to be free from taking medicines someday. For that, I practice a healthy diet, exercise, and so on.
For my diet, once or twice every 10 days, my pancreas gives up even after taking medicines and so my doctor has advised me to go on a liquid diet. For that, I have more soups, and smoothies. Apart from that, I follow a basic vegetarian diet. I also eat legumes and pulses, drink low acidic coffee twice a day (I am a student and I need coffee to help me study). I eat pasta, blueberries, avocadoes, gluten-free rice and bread. I also eat Indian food. I strictly avoid frozen food, burgers, cheesecake, fries, and fried food.
For exercise I do yoga, I take walks, and some gut-related exercises. I still don’t have a lot of energy, so I just do 20-25 minutes of exercise every two days or so. I also take multi-vitamins not more than twice a day.
Any illness will take a toll on you mentally and physically. For patients that are living with EPI, what piece(s) of advice would you tell them to help them get through this?
Initially when I was diagnosed with EPI and I found out that I have to take a pill before every meal or snack, I was shattered. I felt like not leaving my home at all so that people won’t find out that I cannot eat a morsel without taking medicines. I remember saying to my parents that I wanted to live a normal life, want to be able to eat normally without suffering.
Creon has changed my life. I don’t have as much acidity and bloating as before. Some people have told me things like “It’s ok, don’t take Creon for meal, how does it matter?” Or “My gosh, you have to take so many medicines at such a young age!”. I just smile and say, there are just enzymes – I need to take them. I am accepting the fact that I have EPI and that I need to take medication.
For patients: take care of yourself, eat healthy, workout, get enough sleep and rest. Talk to those who are supportive of this and ignore those who are not. Also, if you are suffering from symptoms such as bloating, vomiting, reflux, see a gastroenterologist soon. The earlier the better it is.
I do have a positive attitude because now I can eat anything I want and not have bloating, or diarrhea. I am just grateful that my problem has been diagnosed and I hope I will overcome this someday.