Creon

Powder,
Taking Creon can seem like such a task and I found that I needed a nutritionist to assist and advocate for me with the Cancer Center. I take Creon because of the side effects of Lanreotide so the situation is different to yours and may not fit, but a nutritionist along with an aware Doctor could help you in your situation. My team at the nutritionist's suggestions has ordered a prescription for pantoprazole),along with the CREON to help with the digestive tract's pH levels.
Also, the nutritionist suggested checking Vitamin B12 and Niacin (B3) levels in addition to blood work for Vitamins A, D, E, and K
An individual can tell the amount of insufficiency by being aware of how fatty the stools are which indicates how much Creon is prescribed and used.. There are other tests..
Feeling for you as you self advocate and find assistance and solutions in this often confusing cancer. Your question demonstrates that you are researching things already. Thank You for your helpful question and reminder to stay on top of things.

@maeve115

Thank you for all this feedback. I am in touch with a nutritionist and I'm trying to figure out if she was the one who actually ordered it or was it the gastroenterologist in any case... All this information is helpful. I am checking B12 since I have to give myself shots every month ...other than that I don't know of any tests that are measuring these different vitamins but I will bring it up with my nutritionist. To be honest, I'm quite nervous about starting another medicine, or in this case a food enzyme that as you point out is going to be difficult given that you have to take it on time apparently and fairly close to when you eat and it's incredibly expensive, which means you're going to need a lot of it.

Thank you again for this very important and valuable information. I'm keeping it and reading it over and over so I can be educated on what questions to ask.

This information might also be helpful. The web site has other information for Doctors.
My insurance covers the cost but I noticed that there is information on perhaps - possible payment assistance.
https://www.creonhcp.com/patient-support
and
The Creon Tracker
https://www.creonhcp.com/content/dam/creonhcp/pdf/creon-treatment-tracker.pdf
I have learned that Creon is doable and helpful, when I remember to bring it with me and take it. : }

There are a couple of important things in this situation. Creon is pancreatic enzyme replacement therapy (PERT). It contains enzymes that help digest fat, protein and carbohydrates, and it can help people who are losing weight because they aren't adequately digesting and absorbing their food.

I would want clarification about why pancreatic insufficiency is suspected. Having no cancer in the pancreas doesn't rule out pancreatic enzyme insufficiency, but severe weight loss following a right hemicolectomy involving the terminal ileum/ileocecal valve can have other explanations as well. In particular, removal of terminal ileum can lead to bile-acid diarrhea and malabsorption, and bowel surgery can contribute to other digestive problems. If diarrhea isn't responding to pancreatic enzymes, other causes such as bile-acid diarrhea or small-intestinal bacterial overgrowth should be considered.

Hi! I have been taking Creon for about 7 years now since my total pancreatectomy. I can honestly say that it has worked really well for me and I really have no side effects. I can tell you that it is important to find the correct dosage for your situation. I take 3 x 36000 unit capsules with meals and one with snacks so I take about 12 a day. I sometimes take an extra if there is a high fat content meal to aid with digestion.

My biggest complaint is the cost. Without insurance, it is about $5,000-$6,000 per month so I highly recommend the information that @maeve115 provided regarding the AbbVie assistance site.
Take care,
- Matt

@mcharlesfrancis

Thank you for all this information. I have treated the sibo which was the initial reason I lost so much weight. However, holding the weight I'm at has been very difficult. I appreciate all this information because I am hoping to have a conversation soon with my nutritionist and I still have yet to take one of these Creon pills, yet. The cost is a major factor for me. It is very expensive and although I'm waiting to see if I can qualify for a lower price or maybe even free, I'm not yet cleared. I picked up a dose which I believe is the 36,000 dose so it's the higher dose. And of course I'm not sure if it's going to be working and how to measure the side effects. First. I want to have a conversation if I can with my nutritionist and if impossible the gastroenterologist as well. Thank you for this information. Very helpful.

@mcharlesfrancis

I just realized I was replying to the wrong entry, but they're all very helpful and I will pursue all of these good suggestions.

@powder1 Hi and welcome to Mayo Connect. You have been receiving some great input. Others with PERT issues have used the calculator at https://pertcalculator.org as a tool to help. I understand your concerns about creon and its costs, I suggest you compile a list off all of your questions for your nutritionist and gastroenterologist. It is easy for me to forget them when actually meeting with the providers. We are all different. How are you managing all of the information as it is coming at you? That task can be very difficult.

Powder
It is so tiring to keep researching and explaining to medical personnel what is happening with us. It is impressive how we continue on and on. It is a bit easier having people in our corners even in cyber space. Wishing you success in finding the right medical assistance and decision for you.
Maeve

I have taken 2 Creon (36,000) capsules with 3 meals & 1 with each of 2 snacks daily for a year. It has helped tremendously with clearing up steatorrhea for me. It is very important to take one capsule with the first bite of food and one at the middle of the meal. The only time I have steatorrhea now is immediately following a lanreotide injection. AbbVie Assist has been wonderful and is the only way I could have had access to Creon. Here, retail is about $4,000/mo. and without AbbVie Assist my co-pay would have been about $1,250/mo. Somatuline Depot retail prices are staggering, and my co-pay is about $900 per 28-day cycle. I am thankful for both medications at this stage in this changing cancer adventure.