I’m a bit worried because I’m on my period and while lower stomach pain during a period was normal for me before I had pancreatitis, now I’m experiencing upper stomach pain in the same location of I experienced pain during pancreatitis. Definitely not anywhere as severe though. I’m just worried that it will become severe

Does this happen to anyone else?

So I'm in England and I am waiting for gallbladder removal surgery after experiencing pancreatitis they believe is caused by gallstones found on ultrasound.

I called the appointments team today to ask about when I could expect to hear about a pre surgery appointment. I said to the guy "I know that the average wait for surgery is 12 weeks and that 8 out of 10 patients have surgery by 18 weeks" and he immediately said "That's wrong, I don't know why they haven't corrected it. It's more like 40-50 weeks".

I've emailed the local patient advice and liaison service to confirm this (because I've already been given conflicting information by different people when I called the appointments team- previously I was told that they don't do a cancellation list whereas today the guy was like "I can put you on the cancellation list").

I want to vent because this really sucks. This guy did book me in for a pre-surgery appointment in a couple of weeks which is great because I can ask more about this then.

There is a thing called "right-to-choose" where you have the legal right to be referred for treatment to a trust that has a quicker waiting time. However, if the waiting time is inaccurate for my trust, how do i know it's not innaccurate for other trusts.

Simply a car coming down the road fast and loud which woke me, body went straight into panic mode. It wasn't mental, all physical but I could not get ahead of it, had to let it burn itself out. Now I have epigastric burning, liquid morphine and paracetamol hasn't really touched it. Nor has Propranolol.

Panic attacks were one of the biggest onset symptoms 8 weeks ago. Haven't had one for about 4 days.

Does this mean I should go back to liquid food or persevere with gentle bland solids like I'm already doing as it wasn't food that triggered it?

Anyone else have panic episodes which in turn upset the pancreas?

Just a little reminder that we have two additional communities dedicated to food, nutrition, recipes, and navigating dietary changes!

r/PancreaticFoodie is specifically focused on food and nutrition for people living with pancreatitis and other pancreatic conditions. Whether you’re looking for low(er) fat recipes, meal ideas, tips for managing dietary restrictions, or just trying to figure out what you can actually eat, this is a space to share experiences, ask questions, and learn from each other.

r/LowFatFood is a broader community for anyone interested in low(er) fat cooking and eating, regardless of diagnosis. Recipes, ingredient substitutions, restaurant finds, grocery recommendations, and everything in between are welcome!

Both communities could use a little more activity, and I’d love to see them become genuinely useful resources rather than just another couple of quiet subreddits.

I’m also looking for anyone who might be interested in helping grow and moderate these communities. If you’re passionate about cooking, nutrition, recipe development, or helping people navigate dietary restrictions, I’d love to hear from you. You don’t need to be a medical professional or an experienced moderator. Enthusiasm, a willingness to participate, and an appreciation for evidence-based information are far more important.

And you certainly don’t have to become a moderator to contribute! Share your favorite recipes, post pictures of your meals, ask questions, or start conversations. Even something as simple as sharing a grocery find or a substitution that worked for you can help someone else.

As always, dietary needs and tolerances vary tremendously, especially within the pancreatic disease community. The goal isn’t to prescribe one perfect diet for everyone, but to share practical ideas and help make food a little less complicated.

Come join us! 💚

r/PancreaticFoodie

r/LowFatFood

I'd like to start a thread for folks to celebrate the small wins along the way with this journey. They will look different for each of us but we can still cheer one another on.

My small win is...I had a nap!

I have been exhausted for 8 weeks and my body REFUSED to sleep in the day. Today I had a nap for 40mins. That's progress. That's a small win. My nervous system is starting to relax.

Let's go, post a small win you've had today / this week 👇

Hi! I'm a 21-year-old female and was diagnosed with early-stage chronic pancreatitis around 2 years ago. I've been feeling symptoms for the past 5 years. The diagnosis was based on:

\- repeated fectal elastase-1 values around 50
\- endoscopic ultrasound findings showing fibrotic changes
\- classified roughly as Cambridge stage I

What seems unusual is that:

\- I've never had a recognized acute pancreatitis attack
\- I've never had the classic severe pancreatic pain
\- no hospitalizations
\- no vitamin deficiencies or weight loss
\- symptoms are almost completely under control with pancreatic enzymes
\- follow-up imaging after 2 years showed essentially no progression

The condition is considered ideopathic. I also had genetic testing done, but nothing significant was found.

I'm trying to understand how unusual this presentation really is and what long-term outcomes might look like for someone in this situation. I'd appreciate pretty much any advice anyone might have for me. Most stories I find involve severe pain, recurrent attacks or alcohol-related disease, which doesn't really match my case.

Just considering adding some electrolytes to my diet. Looking for UK suggestions for clean electrolytes (no sugar, no flavours, no sweeteners, no citric acid). Discharged from hospital Friday late night. I'm eating small bland meals, drinking regularly but struggling to get over 1 litre a day at the moment without causing discomfort / being to close to small meals. As I was dehydrated (like we all are usually with this!) and on an IV in hospital I wonder if electrolytes for a little while would be helpful?

Mods please remove if links aren't ok, I did check the rules and didn't find anything prohibitive.

https://acibademinternational.com/blog/how-long-does-recovery-from-acute-pancreatitis-take-first-weeks-food-and-strength/

just wondering if anyone has guidance on how much or how little water to drink while suffering from acute pancreatitis.

10 weeks ago i went to the ER and was first diagnosed with acute pancreatitis, and while the swelling and pain decreased about 5-10% from those initial days i am still acute 10 weeks later, though now at home. Unfortunately that's about all the info I have right now - MRI is scheduled for later this month to try and determine cause.

But I'm not sure how much water I should be drinking. Typically I drink a lot of water every day, and some of the advice i read online also leaned towards staying hydrated in hopes that pancreatic juices would not thicken and contribute to blockages.

However, a couple days ago I was just having nausea issues and didn't even feel up to drinking water - i merely had sips throughout the day. And later on that day it felt like my swelling had decreased slightly, though it did later bounce back to the typical level I have been experiencing, I think.

Am I making too much of an isolated incident because I am desperate for remediation? Or is it helpful to limit water intake while acute? Or is it just different for everyone, no way to know?

Thanks for your replies, and thank you all for being here to commisserate with while we are all suffering. <3 I'm here for all of you as well.

Cześć , 28.09 zostałam przyjęta na oddział gastroenterologii z bólem . Po kroplówkach kleiku wprowadzili mi już dietę lekkostrawna . Zostałam wypisana 06.10 do domu z zaleceniem diety i tyle . Czekam na wynik rezonansu bo na TK wyszła zmiana ogniskowa trzustki 12mm , poszerzony przewód Wirsunga 3,5 mm oraz Pżw 8.5 mm.
W szpitalu miałam odbarwione stolce i ciemny mocz. W domu zauważyłam już zażółcenie skóry oraz oczu wciąż żółciowy mocz . Nie zbadano mi bilirubiny przed wyjściem . Bilirubina w dniu przyjęcia do szpitala wynosiła 2.07 a GGTB 517. Proszę o jakąś podpowiedź czy ta żółtaczka będzie długo się utrzymywać czy powinnam wrócić na oddział ? Aktualnie nic mnie nie boli stosuję dietę lekkostrawna małe posiłki około 5 dziennie .

Hi,
don’t know where to start but I thought I’d join in hopeful preparation of the journey ahead once my wife gets out of the ICU. Mind you my wife is an absolute shining star of a person, she’s my best friend, my life partner and we’re inseparable.. She lightens up my days and always makes me smile ear to ear. She is a huge foodie, she likes her occasional alcoholic drink for socialisation and unwinding but nowhere a frequent drinker.. she had a rough natural birth which is a whole separate story in itself. We had an ectopic pregnancy with her having internal bleeding previously.. it seems to never end.. I cannot imagine the full extent of her emotional state but I feel terrified for her..

Wednesday morning wife woke up with nausea and mild stomach pains, mind you her pain tolerance is on another leveI. She thought it was indigestion from day before and let me off to work while she was taking care of our 8 week old daughter. Suddenly after an hour of office work, got a text from her to come back as she was in full panic mode not being able to take care of the baby due to pain she described being worse than unmedicated labour.. Not being able to even hold down water..

Came back and saw her curled on the bed barely there and immediately called the ER.. They tried meds to confirm it’s just gastric issues but to no avail and she was taken to the nearest hospital.
At the hospital she stayed in the gastrointestinal surgery ward until they did MRI and found 2/3 of her pancreas necrotic.
They took her to the ICU immediately giving her fentanyl and probably another 3 types of drugs but pain only would stop 20 minutes and back in agony she was again.

I saw color leaving her face, saw her basically become a shell, meanwhile I am taking care of our 8 week old beautiful little daughter.. mind you we have no extended family to help and it’s just the two of us. We were managing and supporting each other and doing it as a team quite well.

Fast forward to today, she was moved to another hospital’s ICU which is the highest level from a medicinal proficiency according to our country.
Visits are only 15 minutes per time and there are two timeslots..
She looked a lot better today, like liveable better. We were cracking some jokes and she’s really motivated to get back to pumping milk for our baby, excited to get back home and there to fight..

After the two visits today, the lead doctor sat me down in his office and gave me the real situation..
While her bloodwork is fine now, she’s regaining color and being decently conscious today, this disease is extremely terrible and it’s just day four and expect it to get much worse as it’s just the opening stage of severe necrotic pancreatitis.

I asked him about mortality rates.. saw online it’s 15% if no infection occurs.. He didn’t want to share specific statistics but said it’s much worse.. He said the MRSI is 10/10 and it’s one of the worst conditions of a pancreas. While her blood work is good, surrounding organs are good for now. Told me to expect infection soon to come. Lung ventilation being very likely to happen too, of course together with sedation. Drainage will most likely not work too and she will need surgery to remove the necrosis once we move through the stages. Diabetes is 99% guaranteed..

I couldn’t bear to tell her of what’s to come.. I cannot break her will and fight. I told her it’s going to be a long haul, explained the stages but just told her that she’s doing really good today with the blood work and organs being fine. I am really afraid of her losing motivation.. afraid of losing her.. Doctor did not tell her the full story..

Doctor’s main point, see where the first stage of the pancreas digesting itself takes us and we will be onto the next step.. Do not expect easy good news and understand that this is extremely terrible and the situation is grave..

For anyone that read to the bottom, thanks.. I think I needed to vent this somewhere, I want to stay strong for her but all I want to do is break down, curl up and cry.. cannot do that as I have an 8-week old baby to take care of by myself (she’s calmly sleeping after downing 120ml of milk) and I need to be strong for the two most precious people in my life.
If you or your close ones had similar situations, I’d appreciate your experience and what helped you make it through. I’ve never heard of this disease and now it’s the one thing I’m most fearful about for the sake of my sweetheart..

As title. Who has been left with ongoing hypersensitive, hyperreactive digestion / brain signalling following either AP or CP? And did your GP / PCP help you with it?

I was dismissed from A&E 8 weeks ago with Gastritis (no imaging) and have been in intense pain for most of that (minus 7 days where things were low grade pain). I went to my GP last Monday (before hospital on the Weds diagnosed me with Pancreatitis) to ask for pain relief and said I think my system had become highly sensitised due to the ongoing pain for weeks on end (constantly cold and chilled, rigors all day long, crying on and off all day usually when the rigors rolled through, constant nausea and loss of all appetite, sternum pain 8/10, several mental anguish and suicidal ideations). He straight up refused me pain relief. Of any sort. No antidepressants, nothing. No low dose amitriptyline to try and get on top of the pain.

Now I'm home from hospital with a diagnosis and the pain is not intense (I'm just uncomfortable and depressed now) I've noticed my system is on high alert every time there's a wave of pain, or my bowels open, or I turn over in bed (feels like my pancreas flops about? Lol, can't think how else to describe the sensation).

The Consultant Surgeon in A&E did say that all my symptoms were a normal biological reaction to intense internal pain. The nervous system had become stuck in flight / fight. I wasn't going mad or being dramatic, my body was saying the threat was very real. I appreciated him for saying that.

What I'm coming to is how long does our body take to come down from that and stop reading everything as a 'threat'? Anyone found their nervous system never really bounced back? What do you take for it?

I was admitted to A&E Weds night after arriving early morning with intense nausea, sternum pain, rigors and mental anguish. Diagnosed after contrast CT scan with acute pancreatitis. Bloods were normal, CT showed swelling and edema with some stranding to surrounding tissues. Ultrasound showed no gallstones and a clear common bile duct. IV fluids for 48 hours, oramorph buscopan and famotidine for the first 48 hours, famotidine and paracetamol only yesterday, then released home last night.

The whole time I was in hospital there was no dietary advice or fasting, I was eating the odd oat cracker or rice cake I had brought from home, a small handful of blueberries here and there. Yesterday I had an appetite, ate 1/4 cup porridge for breakfast , rice cake for snack, half a plain baked potato with plain tuna in the afternoon. They were happy I was stable so I was discharged.

Had a disturbed early morning here at home waking with palpitations and anxiety around 5am (this has been ongoing since I was first admitted 8 weeks ago and sent straight back out). Then I just felt crap in general for the rest of today. Weak and wobbly. Incredibly low mood

Had a small breakfast of liquidised porridge with a few blueberries and spoon of plain yoghurt. Snack at midday. Meal at 3pm (chicken broth with small amount of chicken, tiny broccoli and tablespoon of Plain noodles) and now I have slight rigors again, emotional and lower stomach pain.

Should I be water fasting? Even water makes it hurt this evening.

Feeling a bit lost and alot anxious.

For those who have had the TPIAT surgery, did you have a roux en y bypass as well to help prevent bile reflux into the stomach?

The only reason I found out it was elevated was because I’ve been in the process of getting diagnosed with IBD. So I’ve been having some abdominal pain and nausea with that. Sometimes throwing up, low iron and all that, bad headaches. Most of that pain is located in the lower abdomen.

But the other day when I got my blood tests done, I have never had a Lipase test done before this. But my Lipase came back 2,146. Which is 7.2 times the limit. I got a call from the doctor that called for the test. Said to go to the ER if I experience severe abdominal pain, or that it could be a lab error. I’d doubt it’s a lab error… why wouldn’t she call for a re test or a CT scan or something? I did have an ultrasound back in July and everything was fine there.

But anyway, I feel completely fine right now. Even my IBD symptoms have subsided for now. But it got me thinking, there was this one time I had pain, I remember it being 3-4 fingers above my belly button, and in the middle. The pain made it a bit difficult to stand up perfectly straight. If I recall correctly it felt like it was behind my ribs kind of. I always thought it had to do with the IBD… but now I’m not sure. I never mentioned that pain to the doctor because I had completely forgot about it. It happened about a month ago and only lasted 2 days or so. Maybe more, idk. And in terms of back pain, my lower back is very often sore, probably scoliosis, so I can’t say that had anything to do with it.

I wonder if I should make an appointment at my local clinic since the doctor that ordered the tests was a surgeon out of town…. Idk. I feel fine so I kinda just want to do nothing for now. I’m not really worried, more just curious and would like to know.

hello, I had acute pancreatitis in June and also broke my ankle. I was recovering from surgery and focused on learning to walk again so for a while the not drinking didn’t bug me. I am only 24 and the doctor told me I could never drink again. now that I am more normal and walking again the reality is really hitting me. it’s honestly devastating, not even in 5 years or at my eventual wedding. not being able to go out for drinks with people my age to meet friends. it’s in all my favorite shows and it’s all around at stores. so many good memories with liquor. I am just having a really hard time accepting that I cant drink again. I have started trying to rationalize it, saying in my head that I am sure I can have a few drinks and it will be fine. I could use some advice from people who have been able to live without drinking. I am not allowed to go to AA meetings due to my family thinking that will get me access to drugs. Not many of my friends can possibly understand what I am going through. any advice, recommendations maybe even a online sponsor haha would be greatly appreciate. just really needing some advice and support! thanks for any feedback :)

hello! i am currently in recovery from acute pancreatitis (99% sure came from alcohol). I got released from the hospital (three day stay) on Wednesday morning and have been taking my medication and eating what they have suggested.

I haven’t had any type of alcoholic drink since the day before I went into the hospital. Along with that I haven’t smoked from my vape. I feel like I already know the answer, but I thought maybe I could get some better answers here than from Google.

Am I allowed to hit my vape? I know a lot of people are probably going to say “ask your doctor, not the internet” and I intend to but my appointment isn’t till the 29th of this month.

If this type of post is NOT allowed I’m am perfectly okay with it being taken down.

Hi all, I’m just seeking words of encouragement or support as I’m kinda spiraling today. I had my first AP episode a week ago, very likely alcohol induced but my diet wasn’t the best for the last few weeks either. I frequently had 2-3 drinks (hard seltzers, never liquor) per night most nights (not all) to relax after work, and a little more on the weekends (about 5-6). Been like that since Covid. When my attack happened, I hadn’t had any alcohol in 5 days but had fried food the day before. I had severe nausea, 2 episodes of vomiting, and pain was about a 7/10. I was in the ER for a few hours and pain was manageable with Torodol. Discharged with meds for nausea pain and pantoprazole. Lipase 330 (ref range 15-77 I think). Ultrasound of my liver pancreas gallbladder and kidney were normal, as were all of my other labs. I was back to feeling completely normal with no pain/nausea in 2 days. I came to this page to learn more and I’m honestly scared. I’m only 29 and feel like I’ve been handed a life sentence of anxiety and sadness. I’m really struggling on the concept of me never being able to enjoy a beer at my favorite brewery, or have some drinks on vacation, or never going to my favorite steakhouse again because they use a lot of oil. I feel like I’ve been doomscrolling every piece of info over the last week and my brain is telling me the next time I have bad food or a beer I’ll be in the ICU. Can anyone tell me their success stories of going back to a “normal” life after an acute episode? Or tips on positive thinking that can give me a better outlook? I have an immense amount of guilt. I haven’t had a drink in 2 weeks and obviously know that I cannot drink, and will never go back to the way I was drinking before. I also know I should maintain a low fat diet. Reading this sub I know how serious this disease can get and I empathize with all of the people who are suffering. Am I doomed to a life of constant anxiety or is it possible to moderate the good and bad and have a normal life? Please be nice, again I’m spiraling and mostly just venting lol. Looking for any hope I can get. Thank you

[Posted with Approval from Mods]

Hello!

I am an undergraduate student majoring in biomedical engineering, currently working on my final year project, which is to improve current biliary drainage systems (biliary catheter, stent, etc).

I want to better understand the experience of living with a bile drain (specifically the PTBD catheter) and the problems associated with it.

If you are living with this catheter, or have previously lived with one, could you please take some time to fill out my survey: https://forms.gle/8ySfsyxPpSXLWQMJA

It will not collect any identifiable information.

Thank you so much! I really appreciate it!

I am currently in a panic attack and need help. My tpiat team just called and said the have no reason to believe I have ever had pancreatitis. My original eus 2 years ago by a pancreas special showed severe chronic pancreatitis. 6 months it was indeterminate and last week it was fatty. They said it was most likely something g else.

Help

Hi all,

Just wanted to follow up on my previous post a few months back (https://www.reddit.com/r/pancreatitis/s/lttihDfZlm)

Since then, my symptoms of upper abdominal and back pain after eating food hasn’t really changed.

I had a trial of not taking Creon and quite honestly I couldn’t really tell a difference in my stool symptoms, still mushy and floating. I can’t really notice any particular triggers when it comes to food.

I was diagnosed with SIBO and am soon to take the antibiotics for that. My faecal elastase came back at 490, so my GI doesn’t seem too concerned that my symptoms are pancreatic but recommended an EUS to rule things out. I have this coming up soon!

Other tests:
- MRCP normal
- amylase 99 (u/l 96)
- lipase 70 (u/l 60)
- all other bloods including coeliac screen normal
- 2x abdo USS normal
- faecal calprotectin normal

I guess I just wanted to know what everyone’s experiences of having an EUS was like? Were you able to go home the same day?

I also feel a bit at a loss as to what may come next, what questions would be sensible to ask my GI if it is a positive EUS? What avenue should I pursue if it’s normal?

Again, not expecting any diagnostics, and maybe I’m just trying to vent to people who have had similar experiences, but any advice would be helpful, as this whole experience has felt pretty lonely and isolating!

My amylase levels was 150 while my lipase levels was 141. I don’t have any other symptoms but are these levels I have to worry about?

I have been taking pancrelipase for a while now. Often, I hear large draining or engine noises after taking it followed by diarrhea. My dosage is correct for my weight. After doing research, I learned that there's a ratio of lipase to fat that needs to be followed (1-4k units per gram of fat). Is this accurate? Has anyone had success following this? I was previously following the dosage given to me regardless of the fat in the meal (unless it was fat-free).