Hi Out There! I began having steatorrhea 10 years ago while taking care of my ex-husband who was dying of metastasized lung cancer. After his radiation treatments he liked to go to a certain breakfast style restaurant, and I had no idea that French toast could be so devastating to my body! I saw a doctor and told her I was seeing orange fat and loose stool floating in the toilet. I was immediately prescribed a PPI. No explanation. I was 65 years old and told that the "reason" was "well, just look at yourself! You're so fat!" (yes, a doctor really spat that out at me!) And, yes, I was about 200lbs on a 5'4" body. But, I deserved more respect ...and more information.
However, when in 2019 I had reached my BMI goal of 140 lbs on a "vegan" regimen my "pooh" turned into what I call "paste". ... and, my legs swelled up and I was constantly nauseous, and hungry. Then Covid 19 hit the world and I had violent vomiting after eating an orange while I was still on a PPI. I felt like I had an "alien creature" in my upper abdomen. I decided this was gastroparesis and stopped PPI immediately and lived through withdrawal burning pain for 6 weeks, then switched to famotidine which I do much better with. Since then, the unbelievably stinky gas and steatorrhea has made me a hermit. I keep adult diapers handy at all times and have to time how far I can get from home and live in fear of a humiliating public bowel movement. I no longer go to church. And I am worried about family coming to visit over the holidays as most mornings my entire home smells worse than a barnyard before noon. Yes, I have all the fans going and have to open the storm doors and windows it's that bad.
Ancient History:
I had my gallbladder removed when I was 28 and during my third pregnancy began having severe gallbladder attacks from my 4th month and lost 20 pounds. About 2 weeks before my due date I had pain so bad I walked the floor for 3 days without sleeping until I begged for an induction. My gallbladder was removed 6 weeks after delivery.
Since then, (for 30 years) I would have occasional episodes of right upper quadrant pain and had several unremarkable upper endoscopies and colonoscopies. I could eat pretty much anything but could not tolerate black teas and most herbal teas except chamomile tea. I switched to coffee, surprisingly, with cream and sugar and did OK . It was such a comfort to have my morning coffee after a late-in-life divorce, home and job loss, and search for a new place to live that I could afford. Persons I thought would offer some emotional support turned away. Coffee with cream and sugar was/is a big comfort for me!
I was on and off the PPIs until 2020 when I switched to famotidine. Since then, my questions about my increasing UR quadrant pain and constant steatorrhea have been ignored. After pressing my gastro PA to talk to me about the progression of my symptoms he said he "couldn't" talk to me about it. What?!!! 😱 I demanded he explain why he wouldn't, but he wouldn't. My current diagnosis is GERD with esophagitis. Oh, yes, once I did need to go to ER for symptoms and was prescribed limited anti-nausea pills. In 2019 I traveled twice by plane and would load up on antidiarrheals 2 days before I'd travel to avoid an accident on the plane.
This past month I've switched to a new hospital system and had an upper endo 3 weeks ago and elastase and biopsies all unremarkable. Lower esophagitis and no sign of a prior duodenal ulcer. Good news, except I still don't know why the URQ pain and daily steatorrhea. But new doc has referred me to pancreas specialist group that ignored me two years ago. The change is that I had genetic testing done and have the MEN1 abnormality. Still no medical professional has suggested PERT for me and everything I have learned about my "fatso" disease has been from YouTube. Thank you You Tube!
I've felt alone, abandoned and shamed by the medical establishment and keep wondering why the terrible prejudice. Yes, I love my coffee, cream and sugar in the morning with a piece of toast and butter, but I've pretty much had to give that up as I struggle to maintain a low fat, low acid diet. And, veganism had to go as I can't digest legumes. I get nauseous just thinking about lentils! So, I do braised chicken, lean pork chops, and white fish and salmon with no seasonings. When I use too much paprika, pepper, onion, I'm in trouble and grab for the famotidine. So, I struggle with my low fat, low acid diet which eliminates practically every drink other than water and even water burns my gut and sets off a reflux episode which I use famotidine to quell. I have used a probiotic with ashwagandha which I think does help give more form to my bowel movements, but my endocrinologist says to only take it 1 day a week as the ashwagandha can interfere with my thyroid medications.
I am hoping for a reply from my new gastro as he has not suggested any regimen since my tests came back "normal". This is difficult to bear as I know my body is so not normal. I am 73 years old but refusing to think that at my age I ask for too much to be pain, nausea, and steatorrhea free.
Chronic pancreatitis with EPI 
📣 Discussion Topic: If you had to visualize your pancreatitis in a picture, what would it look like?
Help with EPI
dietary advice please
