Adventures with CREON

I am now 7 months past my debulking surgery.  I went back to work in December and my life settled back in a routine.  My diet went back to my more typical “normal” in that I ate healthy, lower fat meals during the week when my day was pretty structured.   But on weekends, I was indulging in restaurant eating with fattier foods. This led to gastrointestinal problems like gas and diarrhea which sometimes extended into Monday or Tuesday. This problem can be caused by having a shorter bowel from surgery or from the Sandostatin LAR that is administered monthly.  In my case, since I didn’t have any diarrhea problems prior to surgery, it is probably due to the surgery.  My body is just not absorbing fats properly. 

I tried Digest Gold, an over the counter digestive enzyme supplement, for a few months and I thought it was working a little bit, at least on the gas problem.  I was keeping a journal of my symptoms and found that I was still having diarrhea for about 3 days a week, sometimes more than 5 -10 times a day, almost always on some variation of Friday – Monday.  Last month my doctor prescribed CREON, a prescription digestive enzyme replacement.  CREON is a medication used to treat people who cannot digest food normally because their pancreas does not make enough enzymes such as lipase, protease and amylase.  I started CREON, at a low dose (6,000 lipase units) and I was to take it 3 times a day before meals.  I made the mistake of starting this drug on the day before my birthday. By the third pill I was having extreme gastrointestinal pain. I felt like I was having heartburn from my esophagus to my urethra.  I was also very bloated and constipated.  I ended the day drinking prune juice to get things moving again.  I was still feeling under the weather on my birthday and had to cancel our dinner reservations.  I recovered in time to have a nice dinner at Palma, a little Italian place in the Village later in the week. Though I was feeling better, I was no longer interested in taking this drug.  I asked my fellow carcinoids on ACOR if anyone had side effects from CREON. The general advice was to take it once a day, get used to it and then balance the dosage to alleviate the diarrhea without getting constipated. 

I started taking it once a day during the week, when I eat less fat and twice a day on weekends when my eating is less disciplined and includes more fatty foods.  After 4 weeks this strategy has worked to lessen, not eliminate the diarrhea problem.    Sometimes I forget to take the pill and sometimes I have diarrhea despite not eating fatty foods or taking the pill. I would say that incidence is much lower and I don’t have to spend my weekends close to a bathroom.  So, after a bit of trial and error, this drug seems to be working on one of the digestive issues that has been plaguing me after surgery. I think this is progress!

On a related note, I had never been on prescription drugs before except for occasional antibiotics that don’t have to be renewed.  I am currently taking prescription vitamin D due to a deficiency (lab test 14, range 20 – 50).  I am also taking CREON, both prescriptions that need to be renewed regularly.  I get my prescriptions from Walgreens and they have me on what I would call “robocalls” reminding me to renew or pick up my prescriptions in the next 24 hours or lose the prescription.  More often than not, my voicemail messages are from the drug store…I find this quite annoying. I wish there was a better way to communicate with my pharmacist.