2 months with pancreatitis

[charlie1234567890]

I had a pancreatitis attack 2 months ago. I was in the hospital for 6 days. I’m still battling nausea and some pain. Juggling zofran and 2 other anti nausea drugs. Any suggestions

[Sshe]

Persistent nausea is incredibly annoying. I'm so sorry you're experiencing this! I've found bone broth to be incredibly soothing for my stomach. Look for organic/free range if you can. I usually boil it on the stove with garlic, ginger, turmeric, tamari (I'm gluten free) and rice noodles or rice (or a basic noodle/grain that doesn't upset your stomach). Right now, I'm eating that every day since my nausea is off the charts. I've personally found that taking zofran for a long time makes me more nauseated

[charlie1234567890 in reply to Sshe]

Thank you for your reply. I agree with you on the Zofran. I do drink chicken broth with rice but drank it so much I got sick of it. I will try it again. Right now all spices hurt my stomach so staying away from them. Do you have chronic pancreatitis or did you have acute pancreatitis? Wondering if this is a way of life after a round of severe acute pancreatitis. It’s been 2 months.

[Sshe in reply to charlie1234567890]

I started out with recurrent acute (and EPI) that progressed into chronic. It took me about a year into recurrent acute pancreatitis to learn which foods worked best for me. It was (unfortunately) all trial and lots of error. Seven years on now, and I'm still learning as the disease progresses, flare ups happen, and I fall completely off my diet because of travel/hunger/etc.

There's a definite difference between bone broth and regular broth in terms of positive gastro effects. Bone broth has some science behind it in terms of being healing for those with digestive issues. I also completely get becoming sick of eating a certain food over and over and over again ugh. There are more days than not that I eat just to feed my body, not out of enjoyment.

If you can stand fermented foods, then kimchi or sauerkraut or yogurt are all good for settling the stomach too. Heads up that it takes time if you haven't eaten those foods before, but it helps rebalance the good bacteria in the stomach and make digestion easier.

I've found I also need to closely watch fiber intake when I'm having flare-ups especially, but all of the time really. Too much fiber and I'm in pain.

I've eliminated gluten and dairy (except for the occasional yogurt), and I keep my fat intake to 30mg or less a day. When I'm doing well, I'll eat lots of fruits, veggies, whole grains, beans, rice, and fish like cod or tilapia. When I'm not doing well, I eliminate all foods that are tough to digest and go simple (bone broths, potatoes, rice, rice noodles, gf bagels and bread that aren't whole grain, gf pasta, rice chex with lactose free fat free milk...) or sometimes just rely on Muscle Milk Pro since that's gf, dairy free and low fat. Those times aren't great for nurishing my body, but *shrugs* I'd rather not be in pain and nauseated. They give me enough calories to function during the day. Ginger and turmeric are staples in my cooking and in cups of tea.

For me, getting on Creon (and eventually switching to Zenpep) were game changers for me, but that was after my EPI diagnosis. If you're having signs of EPI, definitely ask a doctor about testing for it. Leaving that undiagnosed is what transformed acute pancreatitis to chronic. I was doing more damage without the meds.

Feel free to ask if you have any questions. I truly am sorry you're going through this and I genuinely hope it gets better soon!

[charlie1234567890 in reply to Sshe]

Thank you so much for responding again! That is pretty much how I eat, exactly how I eat when in a flare up which has been for the last 2 months since out of the hospital. I will try the bone broth instead of chicken! I’m having an EUS test on Sept 18. Previous CT Scan and MRI confirmed acute pancreatitis. I will talk to the doctor about EPI which could very well be happening. That creon and zenpep are scary but I have to do something. Can’t live like this…pain and nausea all the time. Thank you again.

[Sshe in reply to charlie1234567890]

I absolutely get the fear of being reliant on a med to live (if that's where the fear of Creon and Zenpep comes from, if not, I'm sorry for assuming). I have a horrible time with meds all around, I'm always the person who ends up with the weird side effects, but both Creon and Zenpep really only benefitted me. I'm grateful for them now.

I wish you well in your tests and as you work through the results with your doctor. The most important thing I've learned through this whole journey is that I have to be my own advocate. I've had to push for certain tests or to get certain support. I've had to switch doctors when they weren't listening to me. There's a lot of bias that comes with a pancreatitis diagnosis, and a lack of knowledge throughout the entire medical establishment (a lack of knowledge some doctors don't want to admit to because of ego, or want to use pancreatitis patients solely for research instead of treating them like people). I've personally found that I know more than my doctors about the disease, and I don't make excuses for that or do something just because the doctor says it's what should be done. I ask A LOT of questions now, coming to appts with notes on my phone. Finding a GP who could coordinate all the docs I need, and knowing I could trust my GP and talk honestly with her, was also incredibly valuable.

It's not easy and it is scary. I'm sorry you're experiencing it and I hope you find what works for you.

[charlie1234567890 in reply to Sshe]

It’s not so much the fear of being reliant on a med to live. It’s the possible side effects. Like you, my body doesn’t like medication. I agree with all you said about doctors. Most definitely have to be your own advocate. And I feel there are a shortage of doctors let alone good doctors. I’m sorry you are experiencing this also. Sometimes I think people don’t understand how bad you feel. You can hear them thinking, “How can she feel sick this long.” On a positive note, feeling better today (must be your kind words and understanding). Thank you for all the info. Having bone broth for lunch. 😊

[Artem81]

Hi, it's a pity to hear that,has the same problem, going to try PIRFENIDONE ,i know it's not approved,but i got tired of that...