New to exocrine pancreatic insufficiency (EPI): What helps?

Thank you for helping us all get connected so we can share helpful info!! Mrs Neal (irret2)

OMG. This is the very first time I have heard any connection between gluten and the pancreas! I was diagnosed with Celiac in 2006, and EPI in 2021, Diabetes and CP just in the past 10 days! How come no doctor ever mentioned this?

Thank you! Now I will start more research.

You need to find a Gastroenterologist not long out of medical school. More is known these days about gluten’s effects on the pancreas- it happens bc we lack the enzyme to break down gluten and Gliadin. Gluten and Gliadin are a gluey protein I believe.

Ask for patient assistance from the drug manufacturer

Thank you for reply. I am a dinosaur & technology challenged have had hard time getting on. 1st 2 days just got black screen after seeing post from Coord. I know there r others hope I can get to them today. Previously saw bob name but cud not see post. U can’t all be pay $4k for Zenpep. Mon saw new dr rx for Creon that cost $1000 apologize 4 posting here as I’m afraid I’ll get black screen again. Has anyone had side affects from Creon & how did u get discount? Thx to all

Thx a million John will chk ur sites 4 costs & hopefully get rx filled today got creon down to $1000 but still on hold. Thx 4 giving me hope

Apply thru your doctor for Creon thru MyAbbvieAssist. If you qualify the manufacturer will provide free of charge. You must provide income and medical expenses with application. Your doctor will fill out his part and then fax it in. Even if you receive Medicare you can still qualify.

It takes about a week to get approved. Your doctor can give you samples to tide you over until you get from manufacturer

I was recently diagnosed with EPI and prescribed Creon this med has been wonderful for me. No side effects so far. I contacted the company and got help paying for this very expensive medicine.
I don’t know a lot about this disease but am trying to learn all I can with websites and help groups. Good luck on your search!

Hi, im not sure what group i should be on but ill explain what is going on and hopefully someone can give me some ideas or direction. I have IPMNs (a type of pre cancerous cyst) in the body of my pancreas. It’s 1.4 cm within pancreatic body. My main pancreatic duct is dilated up to 6mm. My common hepatic duct is dilated to 15mm. My gastroenterologist repeats yearly MRIs pancreas type. I had my gallbladder removed in 2017 and the surgeon cut my bile duct in the process. I was in hospital 2 weeks before they transferred me to a higher care facility and then i was in that hospital another two weeks. A stent was placed in the damaged duct and later removed. The IPMN was discovered during one of the MRIs. After being released from hospital i had periodic bouts of pancreatitis pain lasting about 30 to 45 minutes once every 2 or 3 months and then gradually subsiding and my liver enzymes fluctuating. In 2022 the pancreatitis attacks ended and i just had occasional discomfort in upper right quadrant. Since my doctor didnt seem concerned about the IPMN gradually enlarging from .9mm in 2017 to 1.4 cm today or about the main pancreatic duct going from 5mm to 6mm or the common bile duct increasing from 9mm to 15mm , I went to a functional medicine doctor who ran a stool sample test with results showing extremely low elastace (I was having bouts of diarrhea beginning in 2021 but my gastroenterologist simply told me to take fiber which did nothing for me). On my own i read that extremely low elastace (mine was 48) at 100 or less definitely means i have EPI. I bought some pancreatic enzymes over the counter and they helped for a while. When they no longer seemed to be helping i contacted my gastroenterologist again and explained what had been going on with Elastace and the enzymes etc. I asked her for a prescription for pancreatic enzymes thinking a prescription might work better. She prescribed too low of a dose and now 3 months later i am on triple the dose. So far it might be working but i need to give it a couple days. Anyway, i had my yearly MRI a couple weeks ago and now my gastroenterologist is suggesting i have an EUS “to see what might be causing the diarrhea”. Last year my gastroenterologist agreed to do an EUS with fine needle aspiration (I had a video call with her and expressed my concern over what i read about the “double duct” (dilated ducts) with IPMNs and being symptomatic and the diarrhea, fluctuating liver enzymes on blood results and thats when she said she would do the fine needle aspiration. She did do an EUS but she did not do a FNA because she said she didnt see anything concerning while she was looking around. She was also 3 hours behind schedule that day. I feel like now after all this time she is finally maybe getting a bit concerned but I have to wonder if I should be looking for another doctor instead and why would i do another EUS with her when i just did one last year. Im worried that my IPMN is cancerous and that has caused the EPI and I cant even talk to anyone about it until i wind up in the ER with my skin yellow. I had stage 4 Uterine Sarcoma cancer in 2006 and thats a type of cancer that can come back 20 years later. Well i suppose probably all cancers can come back 20 years later… In any case I am worried and have been worried about cancer ever since the botched gallbladder removal. If I do have pancreatic cancer, I dont think i want to go through such a serious operation. I worry about quality of life afterwards. I do want to know what’s happening though. If i was told that its cancer then i would like to hear a doctor out on the process. I might not go through with the surgery but I still want and need to know what’s wrong with me. I was just diagnosed with Psoriatic Arthritis and i feel so tired all the time. Sometimes i feel like its just not worth trying to get to the bottom of this when i cant even get my gastroenterologist to admit that my IPMN, double duct dilation, EPI and others symptoms are concerning. I forgot to add that my gastroenterologist prescribed Zenpep. She did not discuss diet or anything else just that i should take Zenpep right before i eat.