Pancreatitis flare ups

[JosieH90]

Hi all. Where do a begin!! I was admitted into hospital last year in November for 2 weeks due to pancreatitis. Then again in February this year for a week again due to pancreatitis. I've been discharged home and in the past 3 weeks I've had three mini flare ups at home with chronic pain and vomiting!

Food seems to be a trigger for me and I'm trying to learn what i can and can't eat. But from a person who loved food and still loves food I'm finding this very hard .

I'm scared to eat food for fear the pain will come back!

I'm on strong pain relief every four hours.

And the best thing!!! Doctors don't know what's causing my pancreatitis 😔.

Just wanted to say hello to you all and a little about myself . I hope to find some friends through this group

Take care everyone 🥰

[gabilanyi]

Terribly sorry to hear your story, Josie. I have CP so my experience is not directly relevant to you, but please reade Paul's Miller's site on beating pancreatities (beatingpancreatitis.blogspo... and check out his FB page (facebook.com/groups/beating.... He has had acute pancreatitis of the worst kind and has a wealth of knowledge an information about management, diet, lifestyle, supplements, etc. You can write to him directly through the FB page with specific questions and he will answer.

If you are looking for medical advice on concrete issues I would try Grok. You will be amazed at the depth of knowledge it possesses, and you can go back and forth, asking questions and clarifications. For example, you may upload the release letters you received from the hospital, with all the test and imaging results, diagnoses, course of treatment, and so on and it will answer with reference to that information. For a more specialized source of medical knowledge you may try OpenEvidence, which is an LLM for physicians, but if you poke around long enough you will find a way to register as a patient. But I found that OpenEvidence has been very busy lately and it is difficult to get questions answered. Grok is always available and possibly as good as OpenEvidence. Of course, there is also Claude and ChapGPT. I may try a simple question on more than one LLM and see which one you find most useful.

I hope you find some relief soon.

[Namaste24]

Hi Josie!

I’m sorry to hear about your situation. I have found pancreatitis to be very tricky. Very difficult to access and every person is different.

My situation is combined with chronic constipation which complicates the exact recommendation for treatment. I’m in the middle of the process for determining that.

Seeing a doctor who is a specialist in the pancreas is vital. Not all gastrointestinal doctors have the correct knowledge. I saw 4 gastrointestinal doctors before I ended up at Mass General in Boston. The team there is brilliant.

I would be mindful of constipation because you are taking pain meds. I say this because the colon is so close to the pancreas and being constipated exacerbated my pancreas pain. It’s something personal to me which is why I mentioned it.

Don’t stop trying to find answers. Persistence really paid off for me in a big way!

[JonFox]

Aw Josie, I can relate a lot and I'm so sorry you're going through this. I've been hospitalized twice in the past year for pancreatitis, and might've had a few other attacks before I knew what was going on. I too have a lot of fear and anxiety about eating now, along with diet limitations, and I love food too so this has been really hard. Finally, I'm also in the camp of, "we don't know why this is happening" but we have a suspicion and are trying to figure it out. I have lost a lot of weight and the lack of muscle has been causing my back pain and sciatica to flare up as well. I'm also TERRIFIED that if this keeps happening, I'll become chronic, or maybe I already am. Don't have any good advice but I just want to say you're not alone.

[Jackie1947]

Hi. I too have chronic( calcified) pancreatitis the reason why who knows. Medics don't know. One suggestion is lack of a gall bladder that was removed 55 years. Yes I'm old! I also have EPS problems. I think that's what it's called. I had a CT scan 3 years not looking at the pancreas but it showed up and shocked me. You've had a tough time. I've been in hospital 3 times but not due to the pancreas. I hope you pick up soon . I'm usually okay with food that's if I behave. I feel what you're saying is how I felt before my gall bladder was removed. Has that been investigated?.

[Extraspace]

Hi josie

It’s terrible when this comes out of the blue.

but yr not alone.

I did my first hospital session last May and bouts vary in intensity.

I don’t stop doing anything, but careful with what I eat, how much I eat and no alcohol.

I also have no reason for getting this

BE STRONG

Nick

[Gatorgirl8]

Hi Josie

I am sorry you are going through this. It’s so hard and when they don’t know why, it’s so frustrating. I suffered for years and was told all kinds of things, even told I was fat by a doctor, they all ignored my extremely bloated stomach. I was diagnosed with EPI and had an emergency surgery i allowed died from in the same month. I still don’t think my doctor knows enough about EPI. Sorry didn’t mean to talk about me so much, just wanted you to know you are not alone. I can “talk” anytime. Hope today is a good day.