It’s a wonder that Dave and I don’t rattle when we walk. We take a fair few pills! The major type of pill we take is our digestive enzyme called Creon.
Like most people with CF (PWCF) we can’t digest food because our own pancreatic enzymes are prevented from reaching the food by thick mucus. Science has miraculously found a way around this. Enzymes are extracted from the pancreases of pigs and packaged up into neat little capsules for us to swallow. Poor pigs. We have Creon with pretty much everything we eat except snacks that have little or no fat content.
Back in the dim dark ages when Dave was growing up these pills did not exist and PWCF were encouraged to eat a low-fat diet. On one hand this made sense since undigested fat moving through people’s digestive system was bad news. On the other hand PWCF really struggled to thrive since they weren’t getting enough nutrients to survive. With enlightened medicine PWCF are now encouraged to eat a high fat diet because we have the power of pills.
Many many many years ago now (hmmm, I don’t actually know when!), science delivered Viokase which took care of the whole undigested fat problem. It was a powdered digestive enzyme which was sprinkled on the food about to be consumed to get it into the body. It tasted vile and had the unfortunate tendency to start digesting the food on the plate. Yuk yuk yuk. Viokase thankfully evolved into a capsule variety called Cotazyme but the dosage was pretty low so PWCF sat down to an absolute mountain of pills with every meal. Dave recently calculated that he used to swallow 31,668 Cotazyme pills per year. Wowzers.
I was born in 1983 just after a forerunner of Creon was developed called Pancrease so I was never tortured with Viokase or had to swallow handful after handful of pills. Lucky me! The dosage of Creon has increased over the years so we are now needing far fewer pills to achieve the same effect. Happy days!
Even though Creon is a constant in our lives, unbelievably, I still manage to leave the house without pills on occasion. This usually happens when I change handbags – accidentally but inevitably my Creon gets left behind. Sometimes when I check my bag I see the bottle bouncing around in the bottom of my bag and think I’m set… but at lunchtime I discover the bottle is empty. At the moment, missing a dose (or two!) doesn’t have any massive implications for me – just an upset tummy which naturally resolves itself.
On the whole our nurses in hospital are pretty fantastic. Sometimes we need to put up with a newbie who just doesn’t get the Creon concept. Our doctors have to chart Creon as one of our medications and are required to chart it for a specific time. As fate would have it, they usually chart a random dose at a random time… when no food is scheduled. The old timer nurses know we will take our pills with our food in the correct dose as we do every day of our lives and don’t even mention Creon to us. In contrast, when the newbies come around and ask if we have taken our Creon at the dose and time charted they are truly baffled when we say we haven’t. Trying to explain why not – that since my dinner hasn’t actually arrived yet and that I will wait and see what is on the menu before I decide upon the dose – can take a fair while to transact. So now I lie and say “Yes, had my Creon” so they will go away and leave me in peace. Works a treat.