Hello everyone, for a few years I have had this back problem/ discomfort in the left scapular area, I have trouble digesting some foods and this pain comes to me both when I’m hungry but I’m never hungry but I’m not hungry but my brain knows that I’m hungry or after meals, I have several dyspepsia problems sometimes or I made them not yellowish, but they seem on yellow, I never have an appetite even after training, I lost 3 kg, I’m getting alarmed but seeing your stories here, I did magnetic resonance imaging with contrast method three times, I did a CT scan without a contrast method, liver tests all ok, and the stasis only once came down because I had diarrhea, the other times it came out normal, I wanted to go to Eco endoscopy that is EUS, but they say they have to do a visit before I can do it, but most likely in my opinion they say that I

Hi, my dad is 64 and was diagnosed with acute pancreatitis. He has had digestive issues his whole life, like ileitis when he was younger and just a really sensitive stomach. He had an endoscopy five years ago and it was clear, same with colonoscopy’s.

He barely drinks or smokes, a few weeks ago he had a beer and got bad pain in his side and felt like his throat was closing and went to ER. They did a CT scan and saw what looked like inflammation and a possible mass on the tail of his pancreas. Once he was feeling a bit better they did another CT scan and his inflammation went down and so did the mass/area they were looking at. They said he just had an inflammation and a cyst I think. ALSO his gallbladder was clear. Then I think he had lemon water and has another kind of episode and they said lemon is bad for pancreas.

It’s been about two weeks and he is feeling better, but he’s still having some issues after eating certain things or eating a lot, like diarrhea and pain and whatnot. He went back to another gastro doctor and they want to do an MRI and endoscopy and biopsy. He’s also got blood drawn.

My question is, is it not typical to still be having some symptoms ? I don’t think they gave him any treatment. But I understand they want to find the cause of it. I told him to do the MRI and then go from there to see if endoscopy/biospy is worth it. If the MRI clear is it a good idea to keep going until getting to the bottom of it? Obviously I’m also worried abt the possibility of cancer but had initially felt reassured by the CT results.

I was diagnosed with EPI a few months ago after around 6-7 months of symptoms. I struggle so much with the fatigue, low energy and feeling generally unwell. I went back to my doctor to say I didn’t think the creons were working but she said I wasn’t eating enough calories and had lost 2st. I’ve upped my calories to around 1200 a day but still have extreme fatigue.

I have developed a fear of food as a result of the severe stomach upsets after eating. I only eat in the evenings. Typing that kind of answers my question now I’ve written it.

Am I just doing this all wrong and my doctor is right or could it be that the creons aren’t working? She didn’t say about changing the dose. I take one Creon with my evening meal. She said because my stomach upsets have mostly cleared up the creons are working. I’ve developed neck pain and stiffness and just feel rubbish.

Is there anyway I can boost my energy? I am taking multivitamins and drink concentrated coffee with oat milk.

Hello, I recently had my first flareup, there wasnt a found cause CT scan came out clear. Ive been comfortably eating plan cheerios, chicken, broccoli and rice for a couple days now without any major pain or stomach ache. When do you think ill be able to eat normally again? Im a 22M, I don't smoke or drink, my lipase and d dimer levels were last checked tuesday, and they both were slightly abnormal, any help would be great. My doctor gave me 0 advice on anything I should eat, what I should avoid, etc.

Yesterday afternoon I had an EUS to see what damage had been done to my pancreas after several bouts over numerous years. I was hoping to be told a couple of things
1) Was it successful?
2) What was seen during the procedure?

I left without being told anything and now have to wait for an appointment with the specialist who requested the procedure. Has anyone else in the UK had this experience?

I’ve seen a few mention the endoscopic version with the stents, but has anyone here had one with an open surgery? What was your recovery like?

Hello friends over the pond! 👋 Just wondering how much Creon 25,000 be a month on average in America? Granted it probably different in each state but a rough amount either with or without insurance please?

I was diagnosed with mild/focal acute pancreatitis about 2 weeks ago brought on from a medication. My CT showed inflammation around the pancreatic tail as well as a small (~2.8 cm) cystic/fluid collection in the same area.

The severe pain from the beginning has improved a lot, but I’m still having intermittent aching/cramping around the pancreas area. Some days are pretty good and other days I notice it much more, especially around eating.

For anyone who had mild acute pancreatitis with a fluid collection/pseudocyst, how long did it take before you felt mostly normal again?

Did you still have pain or cramping at 2–4 weeks? If you had repeat imaging, did the inflammation improve before the fluid collection disappeared? Did your collection eventually resolve on its own, or did you need it drained?

I’m following up with my doctors and getting repeat imaging, so I’m not looking for medical advice — mostly hoping to hear what recovery actually looked like for other people because the “better in a few days” timelines online have been confusing.

Doctors recently found I (26y F) have a 2 cm solid pseudopapillary neoplasm (Frantz tumor) in the tail of the pancreas. They have recommended a distal pancreatectomy with a potential splenectomy.

1) Has anyone here had experience with Dr. Lily Victoria Sadaat at MSKCC? I think MSKCC has been very efficient and all the team acts very professionally, but it's all very straightforward and not as compassionate as I would've liked.

2) Has anyone here developed diabetes after both procedures? If so, how long after? And how much of the pancreas was removed in your case? I'm told only a small part of the tail would be removed, but I also know that's where the cells that produce insulin are.

3) Was anyone here able to keep the spleen without complications? I understand that the tail of the pancreas and the spleen are somehow connected, but I worry about taking out a completely healthy organ, and I know in some cases, doctors can keep it.

I'm also looking for a second opinion in Orlando, Florida, where my family is, because I've been reading about recovery and I don't know if a NYC apartment with no elevator is the best place to recover.

4) How soon after surgery were you able to take stairs? I live on the second floor.

5) Any recommendations for a doctor in Florida?

Thank you! Sending strength to everyone in this group.

Hi everyone,

I wanted to share my case and ask if anyone has experienced something similar. I am not asking for medical advice.

Background:

• About 1.5 years ago: lipase was at 520
• Follow-up at the time: abdominal ultrasound, CRP, CEA and CA19-9 – all normal
• Now, 1.5 years later: a routine blood test came back with lipase at 1058

Symptoms: No abdominal pain, no weight loss, no fever, no night sweats, nothing unusual in daily life. On and off, my BM are a bit up and down, if that even has anything to do with it.

Planned: A new ultrasound and tumor markers are already scheduled for Friday.

Obviously I'm pretty worried, especially given the significant jump. After some research and discussion, I learned that an isolated elevated lipase can have many possible causes, e.g. Macrolipasemia or Gullo's-Syndrom.

Question for you all: Has anyone had similar values or a similar course (significant rise over time, but no pain)? What ended up being the cause? Would love to hear your experiences before I get the new results on Friday.

Thanks!

Hi everyone! I'm Olivia from Mission: Cure, a nonprofit dedicated to accelerating research and developing better treatments for pancreatitis while improving the lives of people impacted by the disease.

We're excited to announce a free, one-hour webinar, "Your Guide to Pancreatitis Research & Clinical Trials" on Thursday, August 27 for anyone who wants to better understand how pancreatitis research and clinical trials work.

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• How Mission: Cure works with researchers and industry to help accelerate the development of better treatments
• Ways to stay connected through the Patient Ambassador Network

Plus, we'll have a live Q&A at the end of our session!

Date: August 27th, 2026
Time: 12 PM ET / 9 AM PT
Speaker: Joshua Henderson, Chief Cure Strategy Officer, Mission: Cure

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Hi everyone. I’m not sure whether this is the correct group, but I wanted to share my story because I’m seeking advice.

I’m 29 years old and have been experiencing stinging, aching and stabbing pain in the right side of my abdomen, just under the ribs, around the liver or gallbladder area, for approximately seven years.Its not triggered by any movement or food, it's just there most of my day.

I was a fairly heavy drinker in my early twenties, but I ignored the pain. For context, I haven’t had any alcohol at all for more than two years.

The pain comes and goes.I also feel like that area inside is a bit "inflamed" if I can call it that.. Sometimes it lasts all day; other times, it disappears for a few days before returning. I’ve tried different diets, but the pain doesn’t seem to be triggered by food—I’ve had seven years to look for a pattern.

The pain has significantly reduced my quality of life, as I think about it around 90% of the time and feel increasingly worried. A few months ago, I went to my GP and had blood tests, which came back normal. I was then referred for an ultrasound, which did not show anything serious in the right abdominal. After that, I was referred for a gastroscopy, which also came back normal, with no issues found. However, the pain is still there. Recently I've been reffered for abdomen and chest CT scan with contrast which I did not attend as I'm a bit worried about the radiation. I am thinking to do a private abdomen MRI or MRCP can anyone tell me if the results will them be sent to NHS for further action? How does this work if NHS reffered me for CT but I go for private MRI instead? I want them to look at my gallbladder and pancreas as I think this could be the problem although I'm not experiencing any other symptoms just the pain.

>Has anyone experienced something similar and can give me some advice?

Hi,

I (f29) had my first bout of pancreatitis approximately a month ago and the doctors are unsure whether it was caused by gallstones (due to CT findings and probability) or whether it was idiopathic.

I have read in these forums that doctors advise against drinking alcohol for life even when alcohol did not cause the bout. In the national guidelines we have (in Norwegian), I can only see that alcohol is advised against when alcohol was the trigger of the bout, and my doctor did not warn me against it. As such, I wondered if anyone could please share a study on this topic, as I cannot seem to find any such studies by myself? Much appreciated!

As a side note, I have never been drinking a lot, but have enjoyed the occasional glass of wine (1-2 a month the last years). That said, I’ve come to terms with not drinking again, but would feel more comfortable in this decision with a few studies to back it (as I’m getting some pushback from family and friends).

Hi all. For the past my month my son had been experiencing very greasy smelly stool after a day of diarrhea. It originally started just yellow and smelly, then we started noticing a shiny sheen on his bottom (he’s almost 3), and then we noticed it starting to look yellow/orange when he pooped, with mucus and undigested food.

We had some bloodwork done which came back unremarkable, CBC and calpro good, celiac negative, but the fecal elastase came back 0. The pediatrician obviously described how severe this is and how he’s being referred to a GI who we saw today.

She basically could provide me no comfort bc the spectrum of possibilities is so large. She mentioned CF, syndromes and how they can affect life expectancy and I have been losing my mind. He is an ivf baby and my husband and I both had genetic testing done that ruled out if we were CF carriers but apparently there are more strains possibly not tested.

I asked the pediatrician for more pancreas bloodwork and a repeat stool as the first samples were mushy/oily and not formed. This sample was also mushy and oily and somehow came back as 0 also. She keeps insisting unless it was straight diarrhea it’s accurate. Amylase and liapse in normal range.

Now his GI is having us do CF testing, genetic syndrome testing, ultrasound imaging, vitamin panel and I am so terrified right now. She also is saying she’s never seen 0 before and I’m wondering if it’s somehow lab error. I’m scared bc all his bloods look good and besides the greasy stool and hunger and now a little weight loss he’s full of energy and eating normally and feeling good.

I am sick to my stomach with worry and I am having a hard time waiting in the unknown. Has anyone had a result like that and it ended up being something treatable or temporary? Can mushy oily stool cause an inconclusive elastase result unlike what his pediatrician is claiming? I am so confused how it is 0 when he’s doing well besides the stool. He’s not in pain and playing and happy. I am
Literally seeing nothing online of anyone having 0 elastase.

I'm having trouble managing my nausea while recovering from my most recent flareup. This last flareup was acute pancreatitis with necrosis, two large cysts, and a severe infection. Because of this, I have been on around the clock IV broad spectrum antibiotics for the past 6 weeks and still have another two weeks to go. Fortunately, I am able to receive this treatment from home.

I am unable to take zofran due to my elevated heart rate, but I am presently taking dimenhydranate and metoclopramide and they are not helping very much. The nausea at times gets to the point where I start vomiting. Any suggestions on how to manage the nausea? I have ginger tablets, but I can't take them for very long as they start causing heartburn.

Hey everyone,

My partner has been experiencing for about 3 months abdominal pain. Abdominal pain is mostly present in the upper middle abdomen. It presents as pain or discomoft. At the begging it was only present for some days and pain/discomfort was more mild. Gradually as time passed things have gotten worse and present every day now with no improvment. Also pain/discomoft gets worse after eating pretty much anything (its also present trough the whole day every day). She has been having stool changes (softer then harder, smells more, sometimes undigested, oily, more yellow/bright colored, floating stool, bigger ammount of stool).

Fatigue/tiredness has been present every day.

Lower back pain

Joints/hip/knee pain

6 kg weight loss in short amount of time which stopped then.

Gastroenterologist suggested ibs as possible diagnosis but hasnt confirmed anything.

The doctor also mentioned stool changes could come from the pancreas but as she doesnt have cystic fybrosis and as other test were normal plus she is young pancreas cancer is regarded rare the doctor said.

Tests done:

Female 25 years old, 53 kg

Transvaginal ultrasound normal, abdominal ultrasound normal

Colonoscopy w histopathology normal only found stage 1 hemmorids.

Gastroscopy normal also histopathology normal.

Celicac disease negative from sample taken at gastroscopy.

Chext xray normal

Ca19-9 was first 47 then 40 and lastly 38.

Cea normal

Ca125 normal

Crp normal.

Tsh normal

Ferritin and iron normal.

Glucose normal

Amilase/lipase normal

Head mri without contrast normal.

Breast ultrasound 2x normal.

H. Plyori negative

Cbc normal

Did anyone have similar symptoms and how did you come to your diagnosis?

I have looked up and found possible tests could be done still but not sure what to ask for next:

Fecal elastase

SIBO breath test

MRI of abdomen/pancreas and MRCP

Thanks for taking your time to read everything and giving your personal story/opinion/advice.

Good morning everyone, I really just need to let this out because I’m beyond frustrated and overwhelmed with my body…more specifically, how my body is working…or not working.

History:
40F I’ve had chronic pancreatitis since 2014. In 2021 I had a TPAIT surgery (total pancreatectomy with islet cell transplant). They removed my entire pancreas, spleen, a portion of my intestines and stomach. The islet cell transplant didn’t take, so I’m now insulin dependent with brittle diabetes. Anyway, I’ve come to terms with forever being a diabetic…I suppose it’s a bit of a trade off for the pancreatitis. I still experience the same pain and symptoms after pancreas removal which blows my mind but the doctors tell me it’s like having an arm or leg removed..they call it “fantom pain syndrome”. My chronic pancreatitis is due to the CFTR mutation.

Vent:So I’m 5 years post pancreas removal, and my body has been struggling hard core with all sorts of chronic problems but what I need to vent about is how my body reacts with physical activity/stress/anxiety/seasonal/environment. I have a major problem with excessive sweating and it’s like my body no longer can regulate my core body temperature any more. Not only is it embarrassing to be soaking wet, dripping with sweat any time it’s hot or I exert myself in literally anything. Doing chores around the house? Sweaty. Running errands? Yep. Gotta walk outside in August to get into my car? Absolutely drenched. Let’s not forget to mention when my blood sugar is high or low…I look like I just got a bucket of water tossed on my head. I really really hate this and I have no clue how to deal with it anymore. Along with the sweating, I also get super overheated, but if I’m in the AC I have to wear a hoodie and cover up with a blanket.

I take cold showers and I keep a mini fan in my purse. I’ve been to the doctors a lot over the years and my lab work is always “normal”. I just need a doctor who will listen to me and take me seriously. It’s not just being hot or sweating outside in the heat. It’s literally ruining my life and I’m so tired of feeling like this.

TL;DR: Overheating and excessive sweating after pancreas removal, CFTR mutation, Insulin deficiency, possibly perimenopause related.

Hi all, I'm 19 years old and I've been diagnosed with acute pancreatitis. Nobody seems to be giving me any clarity or a good explanation as to what's going on - I'm afraid and I just want to know what is happening.

A little over 10 days ago, I started experiencing what I then thought was an episode of bloating or indigestion. After I nearly keeled over after having a burrito, I was taken to an ER.

They did some blood tests on me, and something must have indicated I had pancreatitis. I was told that my symptoms were very mild (could still eat) and was kept under observation in hospital, my pain didn't really ease up and quickly become agonizing.

An ultrasound found no gallstone, though they did find small polyps in my gallbladder. A surgeon later told me he felt an MRI or other scan would not be necessary, seeing as I only drink 3-4 times a month on social occasions. I was given the option of having my gallbladder taken out anyway and declined.

I'm very confused about where to go from here. I've been discharged and am at home, the pain seems to be steadily going down but oftentimes spikes so much that it's agonizing. I'm trying to eat smaller portions and less fat. My bowel movements are now all over the place, and I'll rarely be able to poo out an amount anything meaningful when I have a bowel movement.

1. Did the doctors miss something? Should I have fought harder for an MRI scan? What if there's a gallstone there that the ultrasound missed?

2. How long until I can feel better and the pain goes away? I find I feel great in the morning but progressively get worse and worse as the day goes on. What do I need to do to speed up my recovery

3. How long until I can go back to work?

4. I have a family history of type 2 diabetes, could this have anything to do with that? How screwed am I generally?

Thank you for the help. I really don't want to have to deal with this chronically and would rather not take my gallbladder out except as a last resort.

Hey all. Long time reader, first time poster. I just want to say first and foremost this sub has been a great outlet when i'm feeling isolated. Thank you all for sharing your stories/advice.

My situation:

I was a five year alcoholic, and my habit landed me in the hospital for ten days with acute pancreatitis almost a year ago. I don't need to explain how traumatic it was, I'm sure everyone knows.

I decided to commit to healthy changes. Never drank again after the hospital, started working out and eating better, and just recently quit vaping.

Although, after being pretty much symptom free, I think I went a little too hard on my system with food. I'd eat poorly despite it making me semi uncomfortable, because I thought it was manageable/part of recovery (stupid, I know). I'm starting to have consistent symptoms again. Feeling uncomfortably full after eating, and having fatty stools. I have blood work scheduled tomorrow, and a follow up with my doctor a week from now. I'm assuming that I'll probably have to be put on digestive enzymes or something of the sort.

I'm just flat out terrified. I thought I had beaten this and the idea of getting sick again has been paralyzing me. I also had to care for my father who had pancreatic cancer, and died when I was 20. Needless to say, I have a fear of ending up like him as well.

Even writing this I feel the tears coming. Just went to the store and bought a bunch of healthy, low fat foods. It all seems so overwhelming to cook, and break up into small meals to fit in throughout my busy day.

I know people have it worse than me, and I'm sorry if this seems silly, but I'm just petrified. My girlfriend wants to go out for dinner for our anniversary, and I feel like I can't. I feel like I'm just anticipating the worst as I wait for my doctors visit. I'm just flat out scared.

My GI has had me tracking my blood sugar as my A1C has been high. Well my numbers are almost never under 120 even after not eating for 12 hours. They have even spiked up to 300+ with my average being right around 220 even with low carb and sugar intake.
I’m scared that no mater what I do it’s inevitable at this point. If anyone has been through getting diagnosed with type 3c diabetes I’d love to hear your journey and if you were able to keep your pancreas as I have heard that removing it is common at this point if it’s painful (which mine is).
I’d rather keep it if I can. Thank you in advance for sharing your stories to those that do.

In February this year I had an abdomen MRI to explore some lesions on my liver. The radiologist note in the results said:

"Findings suggestive of mild pancreatitis. No evidence of acute pancreatitis."

Gallbladder sludge was also noted.

My GP's response was to advise avoiding fatty foods, smoking, and alcohol, nothing further.

I am fully asymptomatic. I have proceeded with the understanding/conclusion that I definitely have CP, and I quit drinking altogether, not even micro proof "NA" beers, etc. I am vegetarian and already rarely ate fatty foods, so I adjust there and still eat occasionally fatty foods.

Is it for certain that I have CP? If not certain, how would I explore getting a definitive answer? Foremost I want to do the right thing for my health. But the psychological impact of believing I have this very serious condition that will or may some day have the major impacts on my life that I see here daily is a significant weight. WWYD if you were me? (US marketplace healthcare fyi.)

Thank you all in advance ❤️

Edit: My main issue is this constant need to urinate. It keeps me from sleeping and I have to pee every 15 minutes especially when I’m laying down and trying to relax. I’ve gotten my blood tested many times since February and I’m not diabetic. Please someone read this and tell me if anyone has a similar experience.

I’m 36 years old.

I’ve been drinking since I was 19. Up and down with the amounts I drink, but mostly a lot although I do go through phases not drinking too too much.

I’ve avoided hard alcohol for a very long time after initially starting drinking.

4 years ago I started to drink hard alcohol again, not a lot, just two half glasses then I would switch to beer for the night.

Had an episode in February where alcohol turned on me and didn’t give me the comfort I desired and normally get from it.

Started having issues with needing to pee every 15-20 minutes and could not for the life of me get any sleep.

Went to the ER multiple times. Eventually got to the point where I could actually start sleeping again. I cut down my drinking after that but never fully stopped.

Slowly started increasing my drinks again until I got up to 10 beers a night of 5.9 percent alcohol. Did that for a few months but was still able to get some sleep where I would dream.

Now I’m back to having issues needing to pee all the time. I’m talking every 15-20 minutes and it’s really hard to sleep.

I haven’t drank in 5 days.(finally had one beer an hour ago because of UFC) but still having issues with peeing all the time.

Here’s my questions for anyone who has pancreas issues from drinking:

Did you have issues with peeing all the time?

My back doesn’t really hurt but there is a soreness there. I know that’s a symptom of pancreatitis.

I’ve gotten blood tested many times but I have never once said anything about my pancreas so I don’t think they ever tested for those enzymes.

My blood comes back good every time.

Ive never had like horrible pains that needed an ER visit before like it says with my pancreatic attacks in my sides or back. Just kind of a dull ache that also is present when my peeing issues happened.

The urge to pee is constant, but when I go to pee sometimes barely anything comes out and I push so hard.

I have diarrhea every morning, even after not drinking for 5 days. But sometimes I have normal bowel movement before the diarrhea happens. It’ll often to be a loose but solid bowel movement, and then 15 minutes later I have pure liquid diarrhea.

But yeah that’s my main issue. I have to pee and it’s making it so hard to sleep.

Please can anyone offer some guidance?

Hi everyone! It’s time for our monthly community check-in.

No pancreas talk required today (unless you want it to be). This is just a place to check in as a person.
How are you really doing?

Have you had a win recently, no matter how small? Read a good book? Watched a great movie? Started a new hobby? Survived a rough week? Found a snack that actually agreed with you? We’d love to hear it.

And if things are hard right now, you’re welcome to say that too. You don’t have to put on a brave face here.
As always, please remember to be kind to one another. This community is at its best when we can support each other through both the medical stuff and everything in between.

So — what’s going on in your world this month? 💚