As part of my (rather compulsive) pancreatitis reading, I've started to learn more about the surgical landscape. There's a lot in the literature about long term outcomes, but two I read recently that I found particularly interesting were this article (Chronic pancreatitis: A surgical disease?) and this one (Long-term Follow-up in Small Duct Chronic Pancreatitis). The former article makes a compelling case for undergoing surgery earlier in the disease before central sensitization occurs and the latter is focused on a more novel surgical approach for patients with small duct disease, which I have.
The thing that's been most surprising to me is that all of the literature I read - even studies focused on long term outcomes - offer particularly encouraging numbers around (a) the number of patients that achieve significant pain relief, including complete resolution of pain, (b) morbidity rates, and (c) QOL improvements.
Early on in my learning I read a lot about the TPIAT and that's primarily what I see folks here discussing. But when I really went deep to learn about the surgery and long term outcomes and complications, I ended up coming away feeling a bit discouraged. My take is that this is the best surgery for those with pancreas divisum and other significant gland malformations or patients who have particularly severe cases. That said, seems like the TPIAT is by far the most radical and is a bear of a surgery/recovery comparatively. I came across this excellent long-form blog written by the spouse of someone who had the TPIAT (since abandoned, I think) which details the recovery. I think it's reflective of what I read in papers as well: you're still likely to end up with brittle diabetes (especially if you're older), may encounter gastric motility problems, etc.
I came away thinking that (for my situation) TPIAT would probably actually reduce my quality of life, at least today. I essentially abandoned the idea of surgery as a result.
But now that I'm reading about all of the other available surgical options like the Whipple, Frey, Puestow, etc. I'm left wondering why I don't hear more people on this sub or other forums discussing them. As an example, the Frey procedure has long term outcomes reflecting significant pain relief in the range of... keep reading on reddit ➡
Posted here a month back, and wanted to get some outside perspective. To recap: I’m a 28 year old male who has had 5 episodes of acute pancreatitis since 2016. First four were in January, March, July and October of that year, and my fifth was almost exactly three years later, this past October. Non-smoker and non-drinker, slightly overweight. Gallbladder removed and diagnosed with pancreas divisum, for which I had a stent placed via an ERCP.
I received fantastic care at Beth Israel in Boston and have since moved to Los Angeles, where I am with Kaiser. Here’s my dilemma: the GI doctor I’ve been seeing has taken a wait and see approach to future events. Says I’m just susceptible because of the divisum, because of my triglycerides (they haven’t been high since 2015, and even then, I was told they weren’t high enough to cause pancreatitis), and to just follow a low-fat diet. My latest CT scan showed some calcification that “show chronic changes”, although my fecal elastase remains normal.
After this last hospitalization, I really felt like I should be more aggressive in trying to pursue answers about what might have caused a reoccurrence after so much time. All of the sudden, I feel like I’ve been shut down by my GI doctor and to basically wait and see if it happens again. I hate to play armchair doctor, but does anyone have thoughts on if I should be pursuing other avenues at this point or if the wait and see option is in fact my best course of action. In an ideal world, I’d go to get a second opinion or head over to Cedars (a NPF rated hospital) but I’m kind of stuck at the moment. Any and all insight would be so much appreciated!
Hi All! New to the sub and really glad to have an outlet to share my story.
My initial pancreatitis attack was by far the worst. Came on suddenly one morning in January 2016. When the local minute clinic couldn't do anything for me, I was carted off by ambulance to the regional hospital, where I spent nearly 3 weeks. It got so bad that I was eventually given a PICC line. No real answers upon discharge, things just finally began to resolve themselves.
Two months later, in March 2016, I suffered a second attack and spent another week in the hospital. At that point, it was suggested I have my gallbladder removed, which happened the following month. The surgeon suggested that there was evidence of gallstones and that was that.
July 2016. A third attack, again out of the blue. Another week in the hospital ultimately prompted me to seek out a specialist in Boston. After a 6-week diet and flush, they performed an MRCP and diagnosed pancreas divisum. In October 2016, I underwent my first ERCP and had a pancreatic sphincterotomy to place a stent. The procedure went well, although I was the 1-in-4 who suffered a 4th bout of pancreatitis as a result of the procedure. You guessed it, a fourth week in the hospital.
I was told it the chances were 60/40 that the procedure would fix my issue, and for 3 years that appeared to be the case. Beside some minor aches and pains, and the discovery of a small aneurysm near the head of my pancreas, it's been smooth sailing. That is, until this past week, when I suffered my 5th overall attack. I spent 4 days in the hospital and now it feels like I'm back to square one. I thought this was all behind me and now pancreatitis has once again reared it's ugly head.
I'm tired and at a loss as to what comes next. There's this feeling that it's not a matter of if but when I suffer a 6th attack. I've resigned myself to the fact I'm all but certain to spend more time in the hospital in the coming year. The question then becomes what is causing this -- and my question to you guys is what should I be asking my doctors? I live in a different state now, with a new team of doctors, and without my immediate family to support me. Could this be hereditary? Could it develop into CP? I want to be aggressive and proactive in my treatment but I'm not sure where to begin.
With that in mind, I should mention a few things. I'm a 28M, slightly overweight but not aggressively so, non-smoker, non-drinker (and never been big on it even before all th... keep reading on reddit ➡
Hey I hope everyone is doing ok and beating this disease
I had my 4th ercp done today they took one of my old stents out and replaced it with a new larger one to keep stretching it and opening up my duct from pancreas divisum-chronic pancreatitis
I did notice they attempted minor papilla cannulation but wasnt successful on that part
They said they was going to do all they can to try and help me like I said this makes my fourth ercp this year and have also had my gallbladder out last month in september
They said once they have done all they can with the stents and stretching open my ducts the dr told me a whipple procedure would be my last resort if I can't get no relief from anything else
I hope it doesn't have to come to that though. My paperwork said I will go back in 6-8 weeks to change my stent again and repeat the minor papilla cannulation.
So there is a update about myself its been awhile since I have posted
Enough about me how is everyone else doing ?
Thanks in advance.
Me: 26M, 6'0" 165 lbs, non-smoker rare drinker (~3 times/yr, not to excess)
Symptoms: pain in left side of mid back after eating virtually anything, but seems to be worse with fatty foods or large meals. It can get really bad, as it starts to crawl up toward the left shoulder and sometimes gets so bad it makes it kind of hard to breathe (like now). It's just gotten worse and worse over the years; diet and med intervention only works so well.
Obviously it sounds like some kind of pancreatitis, but I've had a few tests for that: lipase/amylase tests (multiple), a variety of ultrasounds including an endoscopic ultrasound this past December; the only thing "wrong" with the pancreas is a possibility of pancreas divisum, but GI posits it's asymptomatic and there are no lesions or tumors. Never had elevated enzymes. GI had scheduled me for the MRCP but deemed it unnecessary after the ultrasound. Gallbladder's always been healthy and stone-free, apparently; HIDA scan was so good (96%) one GI doc said it might be hurting from working (squeezing) TOO well, of which I was skeptical.
I have had duodenal ulcers, but apparently clear as of December but there was inflation at my esophageal junction and near the duodenum, as well as eosinophils. The ONLY medicine that has seemingly helped this problem at all the past few years is Sucralfate, but now even that is not helping as much. I've been on the PPIs which don't help and make me feel lousy, H2 blockers with mixed results, and obviously can't take NSAIDS for pain (and refuse to take Tylenol; as a biochemist I am very aware of the dangers of NAPQI) so it's been pretty annoying and made quality of life bad. I avoid all the "ulcer trigger" foods and I exercise 4x/week (bodybuilding), keep meals relatively small throughout the day. Just not sure how to deal with this as no measures I take seem to work long-term.
Doctors have thus far taken a "wait and see" attitude and just been scratching their heads for 6+ years, but I'm hoping someone here might've heard of something like this.
Edit: added info about gallbladder
I’ve posted here before and you’ve all be incredibly supportive, so I figured I’d give it another go around.
Last weekend I had a very mild episode, the first where I could definitively say “this is pancreatitis” while still managing to treat the symptoms at home. Naturally, I wanted to avoid the hospital at all costs.
This would be the 6th (possibly 7th) overall episode I’ve had. Quick recap: 28 year old male, non-smoker, drank on rare occasions. Spent 3 weeks in the hospital in January 2016 with my first episode, followed by another week in March 2016. At that point the gallbladder came out and I was fine... until July 2016, when I spent another week in the hospital. Had an MRCP, confirmed pancreas divisum. ERCP to place a stent in October 2016, spent another week in following a post-ERCP episode. Fine until October 2019, when I spent 4 days in the hospital with another episode. About a month prior to the October 2019 episode, I had about a week of pain. Naturally, I’m worrying that this most recent flareup is a sign of an oncoming attack.
I don’t know if anyone else here has struggled with their care team. In 2016, I was living in Massachusetts and received incredible care through the Pancreas Center at Beth Israel in Boston. Nowadays, I’m living in Los Angeles and have Kaiser. While they were wonderful with me during my hospitalization, the Kaiser GI doctor has been nothing less than frustration. At every turn, he seems to be of the “wait and see” approach. I asked about an endoscopic ultrasound, but apparently he was satisfied with my CT scans that were done back in November. After such a significant interval between episodes, I just have to believe there was something that caused it to rear it’s head again. I could stand to lose about 20 pounds but I’m by no mean morbidly obese and my diet, while not perfect, isn’t absolute garbage either. The GI doctor continues to insist on my history of high triglycerides, although I’ve been told by several doctors my numbers were never high enough to cause an episode.
Sorry, I know this is long and rambling, but I’ve just feel like I’ve been banging my head against a wall with the GI doctor and because I’m with Kaiser, I can’t go looking for a different doctor. If anyone can make sense of this, I’d love some advice — even if it’s just to commiserate! Thanks so much, everyone! Stay safe and healthy out there!
Yeah I made a thread Friday and mentioned I was having surgery today for my recurrent pancreatitis and pancreas divisum.
Well they did the endoscopic ultrasound and a ercp I stayed in operating room 2+ hours.
This is what the dr told me after the surgery. I have definitely got chronic pancreatitis after what he saw today.
He attempted to put a stint in my pancreas but he said that my scar tissue was so bad that he couldn't actually get inside far enough to do it. He made a cut at bottom of my pancreas just for now and said hopefully it helps for time being.
He said by all the damage and scar tissue in my pancreas that he actually mentioned a total pancreatectomy. Which I dont honestly think I want as of right now unless I absolutely have to get it done for life or death.
He is going to attempt to stent me again in about two weeks or so go in with another tool he mentioned and go through the same cut he made today.
What is crazy is I had this surgery done today and have had my pancreas cut on and I'm barely in just a little more pain than I live with on a day to day basis. Like I'm almost use to living with this pain.
He also said I do have the pancreas divisum and my ducts was so small was another reason he couldn't place the stint today.
I just wanted to give everyone a update
I hope everyone is doing good and pain free today :) keep up the good fight every1
Association of SPINK1 gene mutation and CFTR gene polymorphisms in patients with pancreas divisum presenting with idiopathic pancreatitis.
She's been in and out of the same hospital for the last week and a half, and she sees a different doctor every time (no family doctor). She has an unknown condition that causes extreme pain in the abdomen and severe nausea. She has had this condition for several years and no diagnosis. On top of that she has a pancreas divisum but as far as we know it is unrelated.
So far each time they have given her morphine to help the pain, then send her home with some perscriptions when the tests come back negative. Morphine because Gravol isn't helping the pain enough and nothing is staying down. Blood work, stool tests, chest X-rays, ultrasound, and a gastroscopy have all come back normal. Still waiting for results from a biopsy (I think stomach) Her gallbladder and appendix have been removed.
This is the fifth time she's been to the same hospital in the last week and a half. Shortness of breath was added to the symptoms today on top of the pain and nausea. She was white as a ghost yesterday when we called the ambulance. Today I went to visit her, and apparently a doctor decided to not only put her on suicide watch, but also to not give her morphine. She is still in pain and the nurse can't do anything until a doctor sees her, but the nurse there said she's to meet with a psychologist in the morning. THIS IS BULLSHIT. We are desperate for a diagnosis, she's been through enough trauma in the last week to last a lifetime, and our local hospital is seriously pissing us off.
I want to bring her to a different hospital but obviously they won't let me do that until she is released. She's from a small town an hour away, where the problems first started years ago, so that hospital has treated her as well, but it's in Ontario and we live in Quebec. Her family still lives there and I'm considering calling them if she refuses to. I know this isn't a psychological problem because I've seen the symptoms in action.
Has anyone had a similar experience? Chron's and Celiac disease have been brought up as possibilities.
32M, 66 kg (145 lbs), 168 cm (5’6’’), Caucasian No smoking, no medication. Have never taken alcohol or drugs more than occasionally.
I recently had an endoscopic ultrasound (EUS) to check for chronic pancreatitis.
Here is the report (translated from French):
/end of report
This was two weeks ago. Obviously, following this exam, I have to believe I have something like functional dyspepsia rather than a "structural disease", like pancreatitis.
But I still feel awful, with a lot of pain. Eating is generally difficult, and my stool is bulky and floating most of the time.
The doctor's message is that everything is fine. But one thing caught my attention: the mention that my duct of Wirsung (major pancreatic duct) is thin. Is that not something abnormal? It seems like it is almost a telltale sign of autoimmune pancreatitis.
I would like to know what you guys think.
Hello all. A bit about me, I am mid 30s M and have suffered from recurrent acute pancreatitis for the past 20 years. I don’t know how many notches I’ve scratched on the old IV pole but is is well past 30. Same routine: every 6 months to a year my pancreas hates me. 10 - 14 days in hospital then back to form. In the beginning they attributed to alcohol, diet, smoking. I quit all vices yet episodes continued. Then, it was the gal bladder. That was removed yet episodes persisted. After genetic testing, fatty liver, etc. I was referred to the Mayo because local GI team was lost. This began the new phase of my battle. Diagnosed with pancreatic divisum. Of course they went ahead with several ERCPs for stenting, sphincter oddi dysfunction, etc. The ERCPs caused post procedural episodes and brought absolutely no stop to attacks. It was actually the opposite between attacks I live a normal mans life - albeit without alcohol, fats, the usual. Though when I had stents placed I was in daily pain that took me to the emergency department several times a week. Sadly, I know how many CP sufferers must feel life long. For that I’m sorry. After ERCPs and minimally invasive procedures were ruled out as not effective I was left with either medical management or surgical referral. I went medical management route while exploring other potential lifestyle changes to decrease frequency of attacks. To no avail. I found no relief from enzyme replacements or the antioxidant / vitamin therapy (Manchester?)
Well here I am now just returning home from a 14 day-er having made room, literally, for my ICU bed to go to a Covid-19 patient. It’s time for surgery. I can’t take the disruptions from life that AP causes - for my work, my wife, and my children.
Can anyone share with me what drove you to surgery - my doctor was the first team to do PPPD but alternately I’m sealing advice from Inselspital regarding the Berne procedure? When was enough and how was life different post surgery?
Thank you all.
Hey everyone just wanted to say I am scheduled for my third ercp this coming Monday
The dr is going to try to get a stent placed in my major papilla. Last time they played a stent in my minor papilla
He also said they was going to do a nerve block. Does this help a lot with the pain?
My pancreas still isnt draining properly so I am still in lots of pain daily and have chronic pancreatitis
This makes my third ercp in four months
How is everyone else doing ?
Hey everyone I go in for my surgery this Monday for my pancreatic divisum. They are going to put the scope down me and do the ultrasound and inject dye into my pancreas just to make certain that it is divisum. Then the dr said they would put a stint in my pancreas to help the flow of it.
I have been sick since November and really hope this helps me. Some doctors has already told me I have chronic pancreatitis but I really hope this surgery helps with some of my pain and sickness
This is my first surgery ever and I'm nervous not going to lie. I just hope I dont have a flare up after the surgery and get to come home. Wish me luck
Hello everyone for who has been reading my posts this surgery was successful this time.
Last month they attempted a ercp to stent my pancreas but couldn't get in to do it because of all my scar tissue so they cut my pancreas that day.
Now yesterday they went through that same cut and was able to get my stent in. I'm so sore and hurting I'm pretty sure my pancreas was inflamed some yesterday.
I'm just so glad they got my stent in and hoping it helps me. In two more months I have to go back for a larger stent because my ducts are damaged and real small.
I'm thinking I will have to do this for the rest of my life every 6 months or so to change stents or go bigger. Which kind of sucks but if it makes me better then I assume it will be worth it
Has any1 else experienced this as far as multiple surgeries in a year all pancreas related ?
I have chronic pancreatitis pancreatic divisum and minor papilla stenosis I think it is called.
Hey everyone I have been sick with pancreatitis for awhile now since November 2018. No drs here in my hometown could figure out why or what was causing it.
Well I have been seeing a gi specialist out of town and had a mrcp done the other today and he said I have pancreatic divisum.
For those of you who dont know what that is. Its when your pancreas ducts dont meet each other inside of your pancreas and it has a hard time draining. The ducts are suppose to meet up with each other like a river and drain into each other at least that's how he explained it to me today.
He mentioned doing a ercp on me shortly and ejecting dye into my pancreas to make certain that is what I have. He said if it's for certain pancreatic divisum he would go inside and make a cut on my drain to open it up make it like a U shape he also said maybe putting a stent and a balloon type thing in to open my ducts.
Has anyone else ever had this done?
I'm just worried where I have been sick with pancreatitis so long that I already have chronic pancreatitis. I have pretty much every symptom of chronic pancreatitis already. I'm very malnourished and have lost around 45lbs now.
I'm just hoping for the best and really hope this procedure will help me. Anything is worth a try at this point I'm thinking. He did mention it had a risk of getting pancreatitis flare up after the procedure but said it was only 5-10 percent chance
Not sure why I didn't post sooner considering this was almost a year ago now. A little backstory-
Hubby and I started keto in Dec 2013, no problems. In Feb 2014, I found out I had PCOS. Continued doing keto, and 3 months later, found out I was pregnant. Didn't stay keto through pregnancy and 10 months after my oldest was born, found out I was pregnant again. So, 2 pregnancies go by and I've gained weight and have lost all the baby weight I was going to lose without changing diet or exercising. November 2016, hubby and I decide to start keto again. A few days in and I'm starting to not feel well. We figure it's the keto flu and try to push through it the best I could. I was having severe pain in my back to the point I couldn't lay down without it hurting. I went to the hospital and found out I had pancreatitis. Through all the other tests I did, I also found out I have a birth defect called Pancreatic Divisum, where one of my pancreatic ducts isn't formed, but remains as two distinct dorsal and ventral ducts. I was advised by the doctors that the reason the pancreatitis occurred was because the high fat content from keto somehow irritated my pancreas, causing it to be inflamed. 3-4 hospital doctors and my pcp have all advised not doing keto because it could happen again.
What I don't understand is why it didn't happen the first time I was doing keto? I wouldn't mind trying to do it again, I just don't want to wind up in the hospital for a second time. Anyone have ideas or thoughts behind this?
TL;DR- Doctors advised I don't do keto because of my birth anomaly and increased risk of pancreatitis.
Age: 23, sex: F, Height: 5'5", weight: 140lbs, Race: caucasian
Long story short I have had recurring severe lower abdominal pain along with gastrointestinal issues for over two years now. My gastroenterologist ordered some blood work, a stool sample, and an upper endoscopy and colonoscopy. She decided to do all the tests at once while I was at the hospital for the scopes. Everything came back normal except the stool sample showed I have severe pancreatic insufficiency. All additional tests of my pancreas (blood tests, abdominal ultrasound, CT-scan, and MRI) have come back normal (except for having pancreatic divisum, which I was told is fairly common and not a cause of any problems).
So what I am wondering now is, how did she take a stool sample during my colonoscopy? Is this something that is normally done? I thought the colonoscopy prep had cleared me out! Could the colonoscopy prep have caused my stool sample to have less enzyme than normal, giving a false positive for pancreatic insufficiency?