Living With Chronic Pancreatitis During Covid-19 Pandemic

I am a 22 year old male in the early stages of clinically diagnosed Chronic Pancreatitis, and I have had a difficult, fearful time during the Covid-19 Pandemic.

What is Chronic Pancreatitis?

Chronic Pancreatitis is a disorder where the pancreas overproduces the enzymes it’s tasked with creating, which leads to inflammation of the pancreas. These enzymes include amylase, lipase, and protease enzymes, which digest fats, sugars, and proteins. The pancreas also creates insulin which regulates sugar in the body. Some people become diabetic as their pancreas loses functionality from the disease—but I’m not at that stage yet. 

When the pancreas overproduces these enzymes, the pancreas becomes inflamed. And the enzymes created by the pancreas start activating within the pancreas—they start digesting the nearest fats, sugars, and proteins, which are what the pancreas is composed of. The pancreas starts digesting itself. Some enzymes can escape and digest organs around the pancreas. And those extra enzymes enter the bloodstream. The chronic aspect of the disease means the inflammation either keeps coming back, or it simply never goes away. I fulfill the part where it keeps coming back. I’ve been hospitalized 12 times so far for this disease, but I’ve had pancreatitis many more times than that. 

How Were You Diagnosed?

It began when I was 13. It was winter break of 8th grade in 2010-2011. I had started feeling pain about three days before New Year’s Eve. I didn’t know what it was. I was bent over in pain, thinking I had a stomach virus or something. My parents believed I was sick at first, but when my sister got into a stupid fight with them, she said, “It’s so obvious he’s faking,” and they believed her. She was 2 years older than me, but they still believed her. They forced me to eat food—standing over me to assert their power. 

It wasn’t until January 2, 2011, when I collapsed in pain on the TV room floor that they took me to Robert Wood Johnson’s Children’s Hospital, where I was diagnosed with pancreatitis. Doctors were shocked when they saw my amylase and lipase levels. A normal person has levels under 100 u/l. My amylase was over 2,400 u/l and my lipase was like 1,700 u/l. These are the indicators of pancreatitis. Elevated amylase and lipase levels are the #1 was to diagnose pancreatitis. Since then, the highest levels I had were 2,800+, and I am told the mortality rate spikes when the enzymes go over 3,000 u/l.

I was diagnosed with chronic pancreatitis during a family crisis. I was hospitalized twice in like 3 months when I was at Rowan University. I actually drove myself from Rowan to the hospital with my doctors in Princeton. I think it was the 10th time I was hospitalized and my doctor officially diagnosed it as chronic.

What Do You Think Causes It?

No one knows for sure. We know that eating too much fat is a trigger, but what physiology is actually faulty is undefined. It’s a mystery. I’ve had doctors test me for Cystic Fibrosis. Some doctors thought it was related to triglycerides—too much sugar can cause it. My current doctor believes it may be an allergic reaction to meat. During my initial 4 hospitalizations, my doctors thought it could have been my gallbladder, so they removed that. I still kept getting it. There’s a theory it’s a duct in my intestines, and that when I eat too much, it gets clogged and so the enzymes bounce off the food and shoot right back into my pancreas and into my liver (I’ve recently had high liver enzymes too, which tells us it is also getting damaged). As of right now, my case is still a mystery. 

Have You Been Hospitalized Yet During The Pandemic?

Hospital with Covid-19 patients

Fortunately, I’ve avoided it. But I’m scared, afraid, and fearful; it could happen at any time, even if I’m careful—that’s the part that isn’t fair, because we don’t have a cause I can’t eat like a normal person. I’m living in fear. I don’t want to be hospitalized again 1) because of Covid-19 being in hospitals. When I am hospitalized, my lungs get compromised. I get a fever and in the worst cases, my lungs have started collapsing. Obviously, people with compromised lungs are prime candidates for being killed by the novel coronavirus. 2) recovery is getting harder for me. I used to be hospitaled for 3 days and be back to normal by the 5th day. Now, I’m hospitalized for 4 or 5 days and I get gastritis and have lingering pancreatitis (sometimes it comes back) and I can be out of commission for an extra week.  

Do You Think You Will Be Hospitalized Before the Pandemic is Over?

Absolutely. Covid-19 will still be around until we get a vaccine, even beyond that. I think that we’ll still be dealing with this during the Fall of 2020. I don’t think I’ll be able to hold it off that long. I think if I make more lifestyle changes I may be able to hold it off longer, but my quality of life will suffer greatly. It depresses the hell out of me that I can’t eat comfort food. Sometimes, I take the risk. But I have to be extremely careful. And a fear of mine is that my pancreas may lose some of its capabilities of enzyme creation by me not eating fat—the same way the liver stops making lactase enzymes from a lack of milk. I hope I don’t get hospitalized, but I feel it may be an inevitability. 

How Are You Dealing With The Fear And Anxiety Of Being Hospitalized?

I am not dealing with it well. I am afraid and it is affecting my mental health. I’m in my 20s, I deserve to eat whatever the hell I want. Instead, I’m afraid of everything I put in my mouth. I take extra Creon pills (enzyme supplements. The theory there is if I have the enzymes in my system, my pancreas doesn’t have to work too hard to make them, thus, my pancreas will not overproduce the enzymes accidentally). I’m eating turkey every day for lunch and chicken for dinner. Sometimes I have popcorn or a brownie. I’m not eating like a king. I’m eating like a peasant. This is just something I have to deal with for the rest of my life, it just so happens to be more dire in the current climate of our country. 

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