LIVING WITH CHRONIC PANCREATITIS can feel isolating—but you’re not alone.
In this section, you’ll find quotes from people with chronic pancreatitis. Their voices offer strength, insight, and hope.
People with chronic pancreatitis talk about how the diagnosis marks the beginning of a lifelong journey filled with challenges and adaptations.
“Your whole life changes… your family life, your work life, your eating, your sleeping—everything goes to crap. And it’s just hard some days to get back up again.”
“Mentally, it’s just… it’s hard to just not be that person anymore.”
For many, the diagnosis brings not only pain, but anger.
“I had a lot of anger when I was first diagnosed… by the time anyone realized what was going on, my pancreas was like 98% gone.”
Many feel they were never given enough information to understand their condition
“I never realized my chronic pancreatitis was causing all these symptoms. I didn’t even know things like the celiac plexus nerve block existed… I was just treated like, ‘You’ve got pancreatitis, there’s nothing we can do for you.'”
“All I was told in Virginia by a doctor was basically, ‘You need to be on a heart-healthy diet.'”
“Some of the GI doctors just didn’t seem to even know what chronic pancreatitis was. They kept giving me colonoscopies.”
But for everyone, the diagnosis brings a deep loneliness that’s hard to explain and even harder to share.
“Pancreatitis is a very lonely, very lonely ailment.”
“When you're going through it, you feel like you're on an island by yourself.”
“You have all these people around you, and they just don’t get it… they think, ‘Oh, she’s walking around. She feels great.’ It’s not the way it is.”
“Family doesn’t know what I’m talking about.”
People with chronic pancreatitis talk about the many ways their symptoms, particularly the pain, affect their day-to-day life.
“It feels like you're being actively murdered. So imagine being actively murdered for days. It’s torture. Literally torture.”
“It’s like being inside a pinball machine. Sleep gets affected… I can’t relax… I can’t exercise the next day. They all seem to affect each other.”
“When I have a flare-up, I’m not going anyplace. I’m in a lot of pain.”
“I’m in a flare-up 24/7, 365 days a year. It’s constant.”
The pain is a problem, but it isn’t the whole story.
“The pain is one thing, but the full-body nausea every day is what really gets me.”
“The fatigue, the diarrhea—there’s so much more that comes along with it.”
“It’s like the pain is a separate entity. It’s all the rest that keeps you down.”
“Sometimes the brain gets a little mushy.”
“You might not eat for days. That messes with your energy and thinking.”
People with chronic pancreatitis have found ways to regain a sense of control—to manage their symptoms and create a better day-to-day life.
They share some self-care strategies that can help.
“Yoga… literally got me—like, I was bedridden, and that helped me not to be.”
“I do music therapy. That helped… I also do meditation.”
“I quilt, I sew… that helped a lot in getting through life and not being so aware of not feeling well.”
“I keep boxes of ThermaCare wraps… they provide heat for about 12 hours and really seem to help.”
“I have a kit. If I feel like there’s going to be a problem, I take Imodium before I go anywhere. It makes me feel protected.”
“Managing emotions is really important. When stress is high, I always seem to get a flare-up.”
“I’m trying to focus more on watching what I eat. That’s what helps me, especially during a flare.”
Setting goals can also be a powerful strategy for moving forward.
“Those little goals—like ‘just walk one lap around the floor’—meant a lot. It gave me something to look forward to.”
“If I could do it, I felt so accomplished. ‘Oh my God, I walked a whole lap!'”
“I set goals every day and aim for 100%, but sometimes I can’t even make it to the gas station. I just do what I can do.”
You can learn about chronic pancreatitis and these self-care techniques by visiting the rest of this website.
