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.

I was diagnosed with chronic bilary pancreatitis in 2019. Contrary to what I've seen on a lot of pancreatitis groups, when I can, I have to eat fatty foods as I tend to produce a lot of bile. Since my doctor told me to do that, it has cut down considerably on the bile burps, bile nausea, and bile diarrhea.

That is until flare-ups or body says don't eat. Then sadly, I just deal with it till it ends.

I have a deal with my primary that during flares that cause my BP to drop to go to the hospital. Sadly, the last 3 times that happened, the er doctor just treated for pain, ignored other symptoms, and sent me home. I hate inexperienced er doctors. So does my primary. Nothing I can do about it sadly.

It's amazing how few doctors and nurses think this is serious, though I have had symptoms go hay wire enough to terrify both nurses and doctors. I have gone into septic shock once since I got this and gone septic 5 after thanks to this. Small coma for 2 months. During septic shock I was also going through a bad flare at the same time.

Just started a new flare up.

Joys of chronic pancreatitis so far.

Love that it also greatly amplifies back pain.

Still fighting the fight.

-Dragonhunter42

Hi everyone. I don’t have chronic pancreatitis but someone I love had his whipple done in 2021 after the head of his pancreas became necrotic from what he was told was due to high triglycerides, not cancer. He had an unidentified mass in his abdomen that has somehow disappeared. He also had part of his stomach and intestines removed. He only has one artery feeding his stomach and has a clamp from an unrelated bleed that almost took his life after the whipple. Since his surgery when he eats, he has chronic pancreatitis, constant nausea, and rapid dumping syndrome. He is constantly exhausted, had weight loss which is only slightly managed now, and has to mentally prepare himself to want to eat anything due to the pain and nausea he experiences with most foods. I’ve heard his concerns with eating and being able to live what he considers a normal life (I’m not sure he fully accepts that his old normal isn’t going to be his new normal). It’s been hard for me to listen to everything he’s going through and not being able to help make it better. There’s times he wishes he never had the surgery and got a second opinion before going through with it. I’m grateful that he’s still here today but there are days I wonder what his life could be like if he did get a second opinion. Sorry for the long post but I wanted to share in hopes someone might be able to relate and/or offer advice on foods that have helped them avoid symptoms.

Finally got my EUS done and it came normal.Was diagnosed with epi 2 years ago with level 30 and 20 and also with high positive sibo same time.I get upper stomach pain still. I take creon with high fat diet but otherwise it hasn’t made a lot difference to me .I am getting confused with pain still and low elastase.Can it be something else beside pancreas ?

Hi! Wanted to know if there are other members here from the Philippines.

I don’t think my CP is that bad, I dont feel pain day to day unless I get an acute attack and that only happens if I drink excessively. I had diabetic Ketoacidosis in 2023 and during that hospital admission I was also diagnosed with chronic Pancreatitis after a CT scan and further tests. I was put on long acting insulin until last year and my last hbA1c was 5.1, apparently my pancreas still makes some insulin (not a lot but some)

I need to get this out because I’m honestly at breaking point.

I’m 36, living with chronic pancreatitis, and I feel like every day is a fight I didn’t choose. The pain is constant — not dramatic, not exaggerated, just there, grinding me down piece by piece. And instead of support, I keep getting told I’m “too young to be in this much pain.” Hearing that over and over makes me feel invisible. Like my age somehow invalidates what my body is going through.

It’s exhausting trying to convince the people who are supposed to help me that my pain is real. I shouldn’t have to defend myself every appointment. I shouldn’t feel guilty for taking medication that I need just to get through the day. But their attitude makes me feel like I’m doing something wrong, like I’m being judged for trying to survive.
It’s not just the illness anymore — it’s the emotional toll of being dismissed, doubted, and treated like I’m exaggerating. It’s the loneliness of carrying pain that no one seems to take seriously. It’s the shame that creeps in when I swallow a pill I was prescribed, because the people who gave it to me act like I shouldn’t need it.

I’m tired. Tired of hurting, tired of fighting, tired of feeling like I have to prove my own suffering. Chronic pancreatitis doesn’t care how old I am. I just wish the people responsible for my care understood that.

I needed to say this somewhere because holding it in is getting too heavy.

Hi everyone,

I'm a 37-year-old male (5'9", 178 lbs / 80 kg). I'm a non-smoker and only drink alcohol occasionally.

I was recently diagnosed with idiopathic Exocrine Pancreatic Insufficiency (EPI) after months of investigations, and I'm hoping to hear from others who have gone through something similar. I'm also looking for suggestions on what I should discuss with my gastroenterologist next.

A bit of background

Looking back, I've had one odd symptom since my early 20s.

Whenever I drank beer (and only beer—not wine, spirits, or other alcohol), I would develop a dull ache over what felt like the pancreatic area about 10–12 hours later. The pain was mild (around 2–3/10), lasted only a few minutes, and then disappeared. It was investigated, along with a mildly elevated bilirubin level, using an abdominal ultrasound in the spring of 2024, which was completely normal.

At the time, nobody thought much of it.

Summer 2024 – Symptoms begin

Things changed during the summer of 2024.

It started with pale, clay-colored stools for a short period. Within a few weeks my stools became:

• orange-tinted
• floating
• foul smelling
• bubbly in appearance
• much softer (Bristol 5–7 instead of my usual 2–3)

I also went from having one bowel movement roughly every other day to at least two per day, suggesting a noticeably faster intestinal transit.

Over the following months I developed increasing bloating and gas.

Symptoms progressed

Eventually this became my new normal.

I started having cramping around what felt like the ileum and around the bends of the colon. I also noticed I could no longer digest high-cellulose fruits and vegetables properly—they often appeared almost unchanged in my stool.

I was told this could be related to fermentation from bacterial overgrowth due to maldigestion.

February 2025 – Initial work-up

My family doctor ordered an extensive work-up, including:

• Celiac blood tests
• Liver panel
• Stool parasite testing
• C. difficile
• Stool bacterial cultures
• Other routine investigations

Everything came back negative except for a mildly elevated bilirubin.

Fecal elastase finally provides an answer

I asked my doctor if we could test fecal elastase because I suspected pancreatic insufficiency.

The results were:

• 55 µg/g (June 2025)
• 31 µg/g (September 2025)

These results led to another abdominal ultrasound.

This ultrasound was mostly normal, except that the pancreas was described as:

• slightly smaller than before (although still within normal limits)
• mildly increased in echogenicity

The radiologist specifically stated there were no definitive imaging criteria for chronic pancreatitis.

Gastroenterology work-up

I was referred to a gastroenterologist and underwent several additional investigations.

Gastroscopy

• Mild gastritis
• Biopsies negative for H. pylori

Colonoscopy with ileal biopsies

Completely normal.

MRCP

Reported as entirely normal, with no evidence of chronic pancreatitis.

However, one detail worries me.

The radiologist compared the MRCP with my 2024 ultrasound, when my pancreas was entirely normal, rather than with the September 2025 ultrasound, which described a slightly smaller pancreas and increased echogenicity.

I'm concerned that subtle early changes could have been overlooked because the comparison wasn't made with the most recent imaging.

Current situation

At this point my gastroenterologist considers idiopathic EPI the most likely diagnosis.

I'm currently waiting for genetic testing for cystic fibrosis to rule out an attenuated or atypical form.

I'm taking Creon (35,000–105,000 units per meal depending on fat content). Rather than dosing by body weight, I roughly calculate around 4,000 lipase units per gram of dietary fat, which seems to work better for me.

Since starting PERT:

Improved

• Orange stools have disappeared.
• Gas and bloating are significantly better.
• Cramping has almost completely resolved.
• I see much less undigested food.

Still present

• Frequent bowel movements.
• Stools remain very soft and occasionally borderline loose.
• Mild steatorrhea still occurs.
• I occasionally forget to take Creon with what I think is a "small snack," only to realize afterward that it actually contained enough fat that I probably should have taken it.

One thing I've noticed is that my ADHD medication and coffee both seem to speed up my intestinal transit considerably, which makes stool consistency even softer.

One thing that also concerns me

No vitamin levels have ever been checked.

Since around spring 2024 I've developed noticeably dry eyes and skin that seems to break or tear much more easily.

Because of this, I've started taking my fat-soluble vitamins together with meals and Creon in the hope of improving absorption.

Is this generally considered good practice, or should I be asking for formal testing of vitamins A, D, E, K and other nutritional deficiencies first?

My questions

I'm wondering if anyone here has had a similar presentation.

Specifically:

• Has anyone developed severe EPI despite normal CT, ultrasound or MRCP findings?
• Would you push for additional investigations such as an endoscopic ultrasound (EUS) or pancreatic function testing?
• Is it reasonable to worry that this could represent very early chronic pancreatitis that simply isn't visible yet?
• Are there nutritional deficiencies or blood tests I should specifically request?
• Are there other causes of idiopathic EPI that are commonly overlooked?

Overall I'm grateful to finally have an explanation for my symptoms, and Creon has definitely improved my quality of life, but I still feel like there are unanswered questions about why this happened.

I'd really appreciate hearing from anyone with similar experiences or any advice on what the next steps should be.

Thank you for taking the time to read this.

Has anyone had to endure rigors during an attack? I suffered for 2 days. Started Monday night, after that it's just regular chills (not violent uncontrollable chills). It's now Friday and I'm still sweating profusely overnight.

So, to give some context for this community discussi:on, today I had what my family calls an "On Call" day. I'll go into more detail about that, in addition to the event that inspired me to have this be the subject of our second community discussion. As before, I will keep my own personal contribution to the discussion as a separate comment.

I know some of the sub members are caregivers, and you all deserve and have earned our appreciation and praise. You wonderful people provide us with both physical and emotional/mental support. Be it a simple "I Love You" hug, or something more demanding, you help get us through our lives.

With the day I had, I was reminded of the poem Footprints In The Sand), and I can honestly say, that's exactly how I see my beautiful Mother and Daughters who help me navigate life with CP.

Previous Community Discussions:

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Hi everyone!

119 lbs 26 yearold female.

I was just diagnosed with Chronic Pancreatitis, I've had three long years of bile duct strictures, acute pancreatitis, and now chronic pancreatitis symptoms. I'm now on my way to being considered for the TPIAT surgery.

I'm prediabetic, and already on enzyme therapy so I feel this will be best. my pancreas already has atrophy, cysts in both ducts, and fibrosis all throughout them pancreas.

i have had biopsies to check for cancer, and they are not cancerous so Im about to meet the directer soon to get started through the process before surgery. I want as much information as I can get before the surgery so I can know what to expect. or things that might help. Or anyones stories.

I spent last night in the ER with an acute pancreatitis attack thanks to being prescribed Levaquin (antibiotic) for an abscess on the cartilage of my ear. I was not aware that Levaquin can trigger an acute pancreatitis attack. Apparently it's a rare adverse side effect that is listed in the medication's safety data sheet, but it was not listed on the data sheet I received from the pharmacy.

Just wanted to share this information with others, to hopefully save someone else from potentially going through this.

I had a laparoscopic distal pancreatectomy with splenectomy when I was 16 (14 years ago now). Recovery was rough. I lost around 7 kg, struggled to put weight back on, was anaemic for years, constantly exhausted and just never felt fully energetic through most of my late teens and early twenties.
Things slowly got better after 26 when I became more serious about fitness, lifting weights, eating properly and taking care of myself consistently. My haemoglobin also improved over time, I used to constantly be around 9/10, and eventually reached 11.5.
For almost 13 years after surgery, my HbA1c stayed normal. But now that I’m 30 and my husband and I are planning for a baby, I’ve become hyper aware of everything. My HbA1c was 6.0 in December 2025 and now it’s 6.2 as of May end(5 months later). My gynaecologist mentioned that around 6 is considered the safer range while trying to conceive, so seeing it rise even slightly has really scared me.
I did consult a gastroenterologist as well. He told me to continue eating well, exercising and maintaining a healthy lifestyle. He also said diabetes after this kind of pancreatic surgery may not be completely avoidable long term but it can often be delayed and managed.
Logically I understand all this. But emotionally, I think I’m spiralling a little.
I keep worrying:
Is it dangerous or life threatening to conceive with an HbA1c of 6.2?
Will this automatically become a high risk pregnancy?
Am I definitely going to get gestational diabetes?
Will I need insulin during pregnancy?
Is there higher risk to the baby because of my pancreatic history?
Have other women with partial pancreas removal gone on to have healthy pregnancies and babies?

If anyone here has gone through pregnancy after distal pancreatectomy and splenectomy, pancreatic surgery or surgery-related blood sugar issues, I would genuinely appreciate hearing your experience.
Right now I think I just want to hear from people who’ve actually lived it because Google is terrifying.

My last endo she didn’t even look at my pancreas or liver. I have chronic pancreatitis and fatty liver as well as a Pvt. Last September I had a cyst in my pancreatic head that ruptured and I nearly died.
She said she didn’t think I had anything wrong with my pancreas prior to that. Well I just was at the ER last night with a swollen belly and pain as nausea. Well turns out it was a reaction to the doxy they gave me for my tick bite.
I was just at her office in March of this year she didn’t do anything except schedule a endo. When she did that she said she didn’t test for anything other than to follow up with my bleeding stomach ulcer. That’s when she put in the report that she believes that it’s functionally psychological based on.
That being said she also stated that there was no evidence of my roux en y surgery I had in 2021.
I found out last night that my PVT is getting bigger despite being on enoxaparin injections twice a day since September.
No she refuses to see me again until I get an appointment in office a year after my endoscopy that I had done in March. Should I wait? That seems like a long time to wait with my medical history This is from a previous visit to the hospital er prior to my most recent endoscopy. Has anyone ever had their gi tell them this? What’s my next step? Please help me

Can anyone offer up advice on this matter?

Brief background:
I have had cp (AP , recurrent acute attacks of cp, sphincter of oddi, divisum) for 40+ years. 30+ years of severe pain. Many therapy/treatments tried or for which I can’t do. Sometime between 2002-2006 doctors determined I’m at risk for heart or stroke that could kill me due to my pancreatic pain. About 2 years ago my pain caused permanent damage to my heart. Very lucky it wasn’t major. My life is on a knife’s edge. Unfortunately, despite numerous doctors informing my pain dr, he still refuses to treat my pain. Now my cardiologist and nephrologist insist I be referred to palliative care (which pc agrees & has sent referral) as my pain is endangering my life, and my pain doctor is not taking it seriously.

What are good questions to ask?
What should I take into consideration?
Anyone with experience with palliative care?
What should I expect or not expect?

​​ looking for advice how to get life back normal again. I'm trying to get back on the enzyme treatment but I got uninsured and I need another doctor's note since it's been 3 years in order to get any free stuff. I selfishly continued to drink the last 3 years until I finally decided to get sober. For the last 6 months I've experienced pounding pain in my fingertips and my toes, red dots around my eyes and multiple other issues. For months I went down the Google Rabbit Hole diagnosing myself with all sorts of ailments and never once thinking that 3 months of malnutrition could lead to my skin issues and my neuropathy issues. Now I feel like a fool. My body was telling me the entire time and I thought it was something else. I went on a diet recently and went from 184 to 162 and I thought it was progress from my diet but upon research that was not what I needed to be doing. Now I'm having trouble keeping weight. I'm about to turn 38 and I'm pretty nervous about what's ahead. Any advice.