"In the matter of Patient X," read the letter from the state board of medical licensing, "we find no evidence of improper dispensing of narcotics. In the future, however," they went on, most helpfully, "we suggest you pay more attention to how your prescription behavior may appear." The fact that the letter was sent to my colleague and not to me made it no less infuriating. You did nothing wrong, they'd told him. But you need to pay more attention to how idiots like ourselves may react to your practice-habits, rather than to the needs of your patients. Brilliant.
It's been said that the main indication -- without which you ought not go ahead -- for surgical treatment of chronic pancreatitis is addiction to narcotics. Pain, in other words: pain unmanageable by any other means is what provides the rationale for operating on people with chronic pancreatitis. When Patient X had been sent to me, that's exactly the situation he was in, along with the typical debilitating malabsorption syndrome. The non-disciplined disciplined doc was a gastroenterologist, the best around, the one I'd go to if I needed one. Circumspect, brilliant, ethical, dedicated, hard-working, in case the idiots on the board hadn't noticed. But I'm getting off point. Bastards. Sorry. Pin-headed pricks. OK; my bad. Where was I?
Patients suffering from chronic pancreatitis are rarely if ever (as opposed to those with the previously-posted acute form) at death's door. Instead of (or as a result of) boiling away in an acute froth, their pancreases have hardened into a wooden wedge, stuck to and behind colon and stomach, functioning poorly, generating constant and sometimes crescendoeing pain. Neither able to produce the needed amount of digestive juices nor to dribble them freely into the gut, the chronically inflamed pancreas also may short its owner on insulin, making him/her diabetic. In pain, having stinky fat-laden diarrhea, diabetic: those people -- as I said in the first post in this series -- can be miserable enough to wish they were dead. Ol' Patient X was: he was at the end of his rope when I saw him. Coincidentally, the letter from the board announcing an inquiry (initiated by a concerned pharmacist) arrived at my friend's office about the time Mr. X arrived in mine.
Let it be said: surgery for chronic pancreatitis is no panacea. Outcomes are unpredictable, as they are with any therapy whose primary goal is reduction of pain. To the extent that surgical treatment is rational (well-selected, it is, in my opinion), it breaks down into two options: drain or remove. And the choice between those two approaches depends mostly on the pancreatic duct. If it's big and dilated, drainage is probably the way to go. If it's obliterated and/or filled up with tons of calcification, you might want to remove most (or all) of the pancreas. Given the previously described tough location, now distorted by scarring, and given the debility of losing all digestive enzymes (they can be taken in pill form, to marginally adequate effect) and of becoming a brittle diabetic, surgeons (this one, anyway) tend to choose door number one, when the opportunity presents itself, and to avoid door number two like the plague. But it's not simple. When there are lots of operations to accomplish the same goal, it follows that the perfect one hasn't been invented. This gives you an idea of the problem with pancreatitis. But I'm a simple guy. There's one operation I especially like.
Here's an example of a normal pancreatic duct: (the big thing on the left [black arrow] is a scope; the red arrow shows the duct.)
And here's a nicely obstructed and surgically approachable one:
I don't want to get all technical here. Let's just say it's fun do to this:
(And here is an example of why operative photographs are pretty much useless, compared to diagrams.)
Patient X loved it, too. Taking huge doses of narcotics for months, you'd think (especially if he were a drug seeker) that he'd soak them up like a parched pig post operatively. He didn't. In less than two weeks, he was off them for good. (Which sorta pudding-proofed the GI doc's argument that he was treating legitimate pain, and halted the inquiry. By the way: it's not the inquiry per se that hacked me off: it was the pissy letter.)
Because they've saved my hide a few times, I really have no business complaining about radiologists. But they expropriated some of my favorite operations; namely, draining pancreatic pseudocysts. Like draining pus, it's deeply satisfying, because it works: see cyst, drain cyst, say goodbye to cyst. Unlike people housing pus, however, most people who have a pancreatic pseudocyst don't feel bad; so you have to convince them they need it treated. It's true. But it's never comfortable to feel like you're talking someone into an operation. It's one reason I haven't gotten totally depressed over losing the operation to the radiopods. Another is that it comes along pretty rarely. Plus, in some locations, surgery is sometimes still the better choice.
A true cyst is a collection of glandular secretions fully surrounded by a wall made up of duct lining cells. A pseudocyst, in the context of pancreatic secretions, is a collection of pancreatic juice left over from acute pancreatitis, formed into a defined sac, but surrounded by, well, just stuff. Scar tissue, whatever. Small ones, recently formed, have a decent chance of going way on their own. Big ones risk getting infected, or spontaneously draining into the rest of the abdominal cavity; which is why draining them is a good idea. Paradoxically, I suppose, the dangerous anatomy I've talked about in this series turns out to be good when it comes to draining pseudocysts: stuck to the back of the stomach, a cyst can be drained by opening into the front of the stomach, confirming the location with a needle out the back, then cutting down on that back wall and into the cyst.
A row of sutures around the edges of the hole prevents leakage, and eventually the cyst just withers away into the stomach, sealing back up like it was never there. The radiologists do that, now, with a needle (followed by a tube) poked through the abdominal wall, the front and back of the stomach, and into the cyst. Works great. Dammit.
73 comments:
Thank you. It's good to hear a docs perspective on pancreatitis.
Thank you so much for all your information and the acknowledgement that messing with the pancreas is a terrible thing to do. I had one attack of acute pancreatitis that made me pretty sick...retained a stone after my gallbladder was removed, and in the process of having that stone removed. Now I live with Chronic pancreatitis with acute flares (which aren't so cute...) God bless you for writing about it. I appreciate it!
hi.my sister will undergo Pancreaticojejunostomy.because of complete pancreatic duct obstruction.she is married now and lives in UK.But, she is having a vacation here in the philippines.what are the dangers of the said procedure?and where do u think will be the best country to do the procedure and what hospital?
Can a person live with only 1/4 of his pancreas? A pseudocyst has been removed 6 wks ago and is still draining 40cc daily. 46 lbs have been lost in less than 4 months.
jannet: yes. People can live without their entire pancreas. They will be diabetic and require insulin, and will need to take pancreatic enzyme pills. But it can work. With a third of a pancreas, depending on the underlying conditon of the gland that's left, it's likely they'd need those things too, but less; and easier to manage.
Hey Doctor Sid - do you know much about a Roux-en-y-loop? My mum had one done last July. Prior to that she had a partial necrostomy (think thats right) She had 2 pseudocysts and a drain for 3 months. I am not sure exactly what the Roux Loop did. She has changed fron Acute (she nearly died) to chronic Pancreatitis. She cant eat much but is not diabetic.
Thanks,
Karen. (Worried daughter)
Karen: that's exactly what a picture in this post shows: the one with the blue background, about which I said it's fun to do this. With chronic pancreatitis, no operation is a cure. But given the proper anatomy, this can succeed in lessening pain.
So is a Roux loop a lateral pancreaticojejunostomy?
My mum is in a lot of pain all the time and she was booked in to have all her pancreas and spleen removed but the surgeon performed the Roux loop instead. I often wonder would she have been better
to get rid of the pancreas?
Its great to talk to a surgeon by the way - thanks.
karen.
Yes. You can see how the bowel has been rearranged into the shape of a "Y." The choices are all imperfect, and the results hard to predict. This operation is most likely to work when the ducts are significantly dilated. I have no way to comment on a specific case from afar.
Oh I understand you cant be specific I just appreciate any kind of response. Its a very serious and depressing condition.
After surgery on his pancreis, my brother got bacillus gram negative
rods. All I know about it is that it is a blood infection. Can you give me an idea of why and how he
would have got this? I can not find any info on it. Thank you so much.
That description fits several bugs that live in the gut in everyone. E. coli is an example. (Even though e.coli infections get lots of coverage when they show up in restaurants, we all have them living normally in us.) Getting infection with those bugs is a risk for anyone undergoing any surgery on the intestinal tract; and most operations on the pancreas are included. So it's not real common, but neither is it rare. Depending on the nature of the surgical infection, when they start in the belly it's not hard for it to spread into the bloodstream. When it does happen, the cause may or may not be serious; and it may or may not respond easily to antibiotics. Scary as it sometimes is, an infection like that, more often than not, is relatively easily treated, depending on the specific cause.
Thank you so much. He is at least out of the hosptial, sent home with antibiotics and had his blood tested again today. Many thanks for answering my questions.
I have (3)pancreatic pseudocysts. Had pancreatitis 2/08. My pseudocysts are all larger than 6 cm and my Dr. says as long as I am feeling ok I shouldn't worry about them. What are your feelings?
It's one of those gray areas, and decisions going forward need to take in account many individual factors to which I'm not privy. In general, the "conventional wisdom" is that cysts which persist longer than 6 weeks and which are greater than 6 cm ought to be strongly considered for drainage. Are those concepts based on well-studied data? Probably not. Can one predict what would happen if they aren't drained? No. Among the possibilities are: nothing, rupture, infection, bleeding. Of the ways to drain, the options are with the xray guided placement of a tube, or by surgery.
In difficult areas like this, I think additional input is a good idea: from a gastroenterologist and/or a surgeon, one with plenty of experience operating on the pancreas.
Most of the stuff on this blog is from one to three years ago so I'm just wondering if you still answer. I had a whipple surgery to remove two cancerous cysts from my pancreas in Aug. of 2007. Because of no insurance I haven't had any follow ups or meds, trying to avoid the death issue I avoided the whole topic of mortality of whipple surgery survivors but now am experiencing gas, pain, bowel problems and headaches. Can you suggest some web sites or books on recent research on help for whipple surgery survivors???????? Is there still a five year survival rate for us??????????
Shellee: survival rates are only marginally useful, in that they apply to large numbers of people but can't tell anything about an individual. In addition, if you really had cancerous "cysts," it could indicate a less dangerous form of pancreatic cancer. If you want to know what the data are, it's important that you know exactly what your pathological diagnosis was.
As to websites; the symptoms you describe -- depending on what you mean by "bowel problems" could indicate pancreatic insufficiency, or another syndrome called "dumping syndrome." You could search those terms and see if what you come up with compares to what's going on with you. The best idea of all, of course, is to see a doctor; but I understand how difficult that can be without insurance. You might contact the hospital in your area to be put in touch with their social service department to see what help might be available.
Have you heard of an large mural thrombus in the aorta causing pancreatitis?
Heard of it. Never have seen it. I assume it's pretty rare. Here's an article that refers to it.
Hi, I wrote to you back in November about having some side effects from the Whipple surgery and you replied that I should find out more about my diagnose. I did find a letter from the endoscopic ultrasound and fine-needle aspirate biopsy that was taken. This is what the doctor said, "Aspirate came back positive for mucinous changes within the cyst fluid. This finding puts you at significant risk for progression into a pancreatic malignancy, and the whipple is a very acceptable treatment plan." Does this mean it wasn't cancerous and only had the potential? I did some research on dumping syndrome and it sounds very much like what is going on with me. I still have no insurance, any suggestions on diet that may help relieve the symptoms of this. Is it absolutely necessary to take enzymes and can a enzyme supplement from the health food store do the same thing as a prescribed enzyme? Any symptoms that I should watch for that I should go to the doctor immediately? I really appreciate your advice as it is so difficult to get up to date information online. Thank you.
Shelley: I hate to get into specifics for people I don't know. I infer from what you wrote that there was no malignancy found in the needle aspirate. It might also be useful to know of the final diagnosis of the pancreas after it was removed, ie, whether there was anything else found.
If you found articles on dumping, you must have also seen recommendations about diet. Generally they include avoiding high-sugar foods, drinking liquids between meals rather than with meals, etc.
As to enzymes: if there is known pancreatic insufficiency, then pancreatic enzymes are generally useful. Unless the "enzymes" you are talking about from the health food store are specifically pancreatic enzymes --which they likely aren't -- they won't be useful. A hallmark of pancreatic insufficiency is diarrhea, particularly involving undigested fats, and very often weight loss. Once again, you'd be much better off with the care of a doctor who can see you and know you. All I can do is make general comments, and I can't really go beyond what I've said here.
Thank you for your comments. I know you can't give me medical advice that I can absolutely live on, but I do appreciate your comments and it gives me ideas as to do more research on other options. I will eventually go to the doctor but at this time I have to choose my visits wisely as I know I will need those doctor visits more as my side effects become worse. Again, thank you for your help.
My has pancrease cancer that is one solid tumor and has not spread. He had never had any pain untill 3 weeks ago when he was diagnosed with a large(baseball) size pseudocyst. He is now in pain and unable to eat. The doctors says that draining the cyst would not be useful to him. She said that it could come back.
What do you think?
Susan, that's a really hard question to answer without knowing details, such as whether the cancer was removed, whether the cyst is separate from the cancer, what the source of the pain is felt to be. Getting a second opinion in complicated cases is often useful, but it should be from someone able to examine the person and review the records. I try to provide general information and insights, but it's nearly impossible to give a meaningful opinion on specific cases from so far away.
I have a quick question, this does not relate to a personal experience, just curious. If a patient has severe acute pancreatitis of unknown origion, no stones in any ducts blocking flow, but only known hx possible etoh. Person does not report drinking that much, but recently a lot in a short period of time. CT shows edema surrounding pancreatic head, with phlegm? cxr also shows elevation of L hemidiaphragm. Pt wbc goes from 11 to 17, and creatinine shoots up from 0.9, to almost 2. urine output minimal and very dark tea colored. b/p being supported by ivf @ rate >150cc/hr. Initially had Kcl, but when potassium level started to rise, removed from fluids. Platlets start to drop, amylase>700, lipase>60000, all liver enzymes elevated, along with bilirubin. pt is npo, with pain, and abx covered. Pt appears to be third spacing, and is on 3l./nc with tachycardia. Surgical consult ordered. What could the surgeon possibly do in this case, when there is no cyst or abscess noted on the ct one day prior, could they even do anything at this point? If you don't feel comfortable answering I understand. I am just truley interested to know what role the surgeon would play in helping, if no identifiable mass, cyst, present to drain to duodenum? thank you in advance, even if you don't respond.
Because people with pancreatitis can get pretty sick and sometimes require surgery of one sort or another, surgeons are often consulted even when it's not clear there's an operation in the future. In the case you describe, it doesn't seem there'd be an immediate role for a surgeon, and there may well never be. But asking one to follow along isn't unusual.
thank you for your response.
Thank you for taking the time to sit down and explain this information in less technical terms-
i am a new grad nurse and i had a patient recently that had a cyst drained following an acute pancreatitis and in the blink of an eye became septic.
i had never heard of these cysts in nursing school- he had a hx of heroine abuse and etoh with constant tremors so aside from the temp spikes and the sharp wbc spike there wasnt much clinical data to determine his impending change in status. he had been tachycardic since admission (the information i got in report) in the 140's. bp was stable and became more and more tachypenic as the shift went on. none of the doctors addressed anything but the tremors which ceased while he slept except for the pulmonolgist who did a thoracentesis and got 400ml out.
since i am still learning and questioning every step i take- be it guided with my preceptor or independent. i am curious if there is anything i totally missed with the picture, a way i could of convinced them of his transfer to icu prior to profuse diaphoresis and a temp of 103 that wasnt being touched by the norco and tylenol any longer.
newRN: people with pancreatitis can be sick as hell, and there are so many complicating issues it's hard to say much from so far away. Was he dehydrated, was the cyst infected, was the pleural fluid infected? I have no way of knowing. But I think the most common error initially is not replacing fluids adequately, as well as electrolytes, calcium, etc. I'm a prejudiced surgeon, but in my experience medical people undershoot fluid resuscitation severely; and they make critical decisions -- like draining the cyst -- without surgical input.
It's a difficult decision about when/whether/and by what means to drain a cyst. In my view, it's often an error to do so early in the process, because many resolve on their own, and traversing the area can cause sepsis. Was that a factor? Who knows?
As a newbie, you're in a tough position when you have concerns. Not knowing more about what was going on, it's hard to suggest what to say or do; but you certainly DO have a right to raise concerns. Maybe you could sheepishly ask, for your own edification, when they typically ask surgeons to consult. What are their criteria for deciding when to drain a cyst? That sort of stuff. Obsequious. Because you're just a silly young nurse and they're wise and all-knowing doctors.... Heh.
It gets easier, I think. I can tell you that when certain nurses who'd been around the block a couple of times, and with whom I'd worked a lot, called me to say something was wrong with so-and-so, I paid a LOT of attention.
I really enjoyed your blog, particularly the ones about pancreatitis. I had acute gallstone necrotizing pancreatitis in March, 2009, was in the hospital 6 months, had kidney and lung failure, sepsis, 4 nosocomial infections, 7 operations, etc. My surgeon definitely saved my life, and I am doing well now with just one surgery left (to reverse my ileostomy, as the pancreatic enzymes destroyed half of my colon). This helped me understand what I went through. It was hell, but I survivied, thanks to my surgeons and other doctors.
As a 33 year old who suffered from pregnancy induced acute pancreatitis who now suffers from plain old chronic pancreatitis, it's nice to see a surgeon who knows just how much pain we are in and don't just take the meds for the sake of it !. Now if you could just do something about the alcoholic tag i get everytime i attend my local hospital i'd be EXTREMELY grateful !!.
anonymous: that's about as bad as it can get and still be survived. Whew!
Scotsferret: wish I could help.
Yes, it was a bad case of pancreatitis. Every doctor I saw (I had 7 different specialists) said it was a miracle I lived. They were getting ready to tell my family I was most likely going to die when I turned the corner. On top of all that, 3 months ago I found out I had endometrial cancer (which I believe was indirectly caused by the previous illness). Hopefully, it is cured by the surgery I had 2 months ago. I am doing remarkably well, and am not even diabetic. My surgeon is my hero! Thanks for your blogs; you write quite beautifully.
Nyllrap (formally anonymous)
Absolutely superb and informative blog. Cheers mr Sid. I had open necrosectomy 18 month ago in Manchester uk. I was very poorly and really lucky to be where I am down today, lucky that I was eventually treated by a brilliant man and his team, mr o'reily, who knew their business all ends up. He, and all the men and women like he and yourself who study, and understand the pain and anguish, both physical and mental, have my heart felt thanks and admiration. Heavens only knows how many families are still together thanks to your knowledge, skill, and dedication.
Wish I could put into words how in awe I am of you folks.
Paul. Manchester UK.
Thanks very much for your words, Paul. You've come through well, I infer.
I'm as good as I've been in a long time, apart from addiction to pain killers, but I'm due to face up to this very soon.
My probs now are more mental than pain. I'm absolutely terrified of being ill again so I eat tramadol to make sure I feel no twinges.
It's refreshing to see words from people who have treated sufferers of this illness and to see that you don't all just assume immediately that every patient is an alcoholic, although I understand this is the main cause of pancreatitis?
I had acute attack in 2008, leading up to this attack I was suffering attacks at least once a week, mainly after creamy foods and deserts. My gallbladder was removed due to stones, I was great for 3 month then attacks started up again. Soon they were daily, after lunch I would gomand sit in my car and double up in agony. 36 year old man crying in works car park in pain every day.
The attacks normally settled 3/4 hour after eating. Last attack did not settle and my wife called ambulance at 2 am. The next 3 month I spent in hospital with my surgeon, who had previously whipped my GB out, just dosing me up on antibiotics trying to let the pancrease settle. It didn't and I was transferred to North Manchester general. They tried to drain via tube in left side of body but this did not aid so attempted to perform keyhole but when I awoke I was told they could not access because no room past spleen and kidney.
2 days after that I underwent open necrosectomy and went to HDU. Whilst there I was on ketamine and was given double my dosage. Night after I felt a pop in left kidney area and began passing lots of blood clots from below. I had my normal cathater replaced with one which forced saline I to bladder to ensure that clots were not allowed to build. Eventually let home with stoma drain passing approx 150cc per day. Self injected to reduce, forget the name of injection, and went on from there.
I'm still scared stiff with every tummy ache or heartburn but need to learn that life is for living and I've been granted the opportunity to do that thanks to skill and dedication of doctors and nurses who tended me, as well as my brilliant wife and kids who put up with my neurotic mood swings and almost hypochondriac personality :-)
I hope that you guys get the opportunity to reflect, during retirement, on all the success stories and families you have helped over your careers. You truly are miracle workers. You may think at times you're just doing your job but that job sometimes gives people like me our lives back when, without intervention, my wife would be a widow, and my children fatherless.
Stay lucky chief.
Paul.
I just had my second confirmed bout of pancreatitis - with a cyst found by CT scan this time... and plenty of stomach pain over the past few years. I'm not a drinker (in fact coworkers tease me about that) but I do have high triglycerides - something my dad unintentionally shared with me.
On this fine autumn Saturday night I'm in my recliner watching tv and the clock for my next dose of pain meds. Wasn't admitted to any hospital... but I'm waiting to hear from a local gastro doc to see what he wants to do.
I had hoped he could just cut me open and "fix" this - but after reading these posts I think I'll ask what non-invasive options I have. Will they want to sample the fluid in this cyst? or maybe just take a closer look at it?
I don't mind losing a bit of weight, but I'm starting to miss having real meals... and the pain can be quite intense if I'm not medicated... but I can't drive when I AM medicated. *sigh*
I'm single, in my late 40's and diabetic. I sure don't want to think this is going to run my life from here on out.
Like much else about the pancreas, cysts are tricky. If acute, they may resolve on their own, with no intervention needed. Sampling the fluid might be considered if there's a question of it being infected; otherwise, not too likely.
Depending on location, a persistent cyst can usually be drained with percutaneous techniques (ie, with a needle through the skin), non-surgically.
can a person live a healthy life without pancreas plz do help me
hi frnds, pz help me out im sufferinf from chronic pancreataties with attacks after every 10 days. can a person live a healthy life without pancreas
adi: it is indeed possible to live a pretty normal life with no pancreas. The most serious issue is that one would be diabetic and need to take insulin. But diabetics can do pretty much anything they want in life.
It's usually necessary to take pancreatic enzyme pills with meals, also. But for people with severe debilitating chronic pancreatitis, it can be a fair trade.
Thanks for the information on pancrease removeale .There isnt much info. out there. Ive had pacretitis for 32 years. The galbladder had stones but with all the gas it didnt show up on tests.Over the years I had some very good doctors and nurses. I also had some that should never have taken up that line of work. The pain from pancretitus for me was unreal. Many day you wished you were dead.I ended up taking methadone 30 MG up to 10 times daily. Finally my pacrease shut right down and I had 90 % of it removed. I now only require 10 MG of methadone at night. I could proably not take that but if I dont the pain keeps me up most of the night.The only problem now is I feel tired all the time. I take insulen 5 times A day plus Cotazym ECS. 20 with meals. Dont get me wrong Im not complaning as I feel 200% better since operation. What im asking is there some thing else I can try for the tiredness. Thank you for your info Dale
Dale: you didn't say how recently the operation was, but tiredness can last for months after major surgery like that. However, since there are lots of possible reasons for tiredness, there's no way for me to make a suggestion other than to say you should work with your doctor to address it.
Hi,streight to the poit sir. I have chronic pancreatitis. What I want to know is once the whipple is performed and they cut the damaged part of the pancreas off, what ever percentage of the pancreas is left in my gut does it keep on self destruction mode or it stops there? are enzymes enough to survive without a pancreas? Also I keep on hearing about these artificial pancreas but they only seem to be focused on diabetics, do you know of any advances that are being made that can help people like us?
3rdEye: Doing a Whipple procedure for chronic pancreatitis is pretty rare, in my experience; in fact, if the chosen operation is to remove pancreas (as opposed to a Peustow procedure to drain it), one would usually choose more or less the opposite of a Whipple. In other words, remove the body and tail of the pancreas but leave the head, where all the anatomy is.
For pancreatitis, any operation that aims to remove the pancreas, all or in part, is nearly sure to leave the patient diabetic and in need of taking digestive enzymes. For those with severe chronic pain, it can be a fair trade. If the anatomy is right -- ie if the pancreatic duct is dilated, the initial choice is usually something like the Peustow.
Taking pancreatic enzymes generally can work well. As you said, "artificial pancreas" generally refers to ways of managing insulin requirements. The cells that produce insulin, islet cells, can be harvested and transplanted as well, although that's a process still fairly rarely done.
As you seem well aware, chronic pancreatitis is a very frustrating and difficult disease. I wish you well.
P.S: Re-reading my original post, I see I didn't use the term "Peustow procedure." That refers to the operation I said it's fun to do, the lateral pancreaticojejunostomy.
my son had a very large pancreatic pseudocyst needle biopsied yesterday US and gastroscopy. Today he is in much more pain that he has been in (which has been significant) says it feels like muscle pain. Any ideas why? I have suggested he call the doc....
I agree with your suggestion. There's no way I can have any useful insight from so far away.
Hi, What is the life expectancy for someone who has a total pancreatectomy for CP ? The figures I've read all seem to relate to TP for PC rather than CP which I guess would reduce it ? What are you thoughts on TP with auto islet transplantation ?
Thanks
I'm sorry, I'm well aware of but have no personal experience with total pancreatectomy for CP. I've done subtotal pancreatectomy, and drainage procedures (pancreaticojejunostomy) but not total. I'd have to look up the answers to your questions the same way you would, as to life expectancy, and how it's altered by islet cell transplant.
I hope you can find satisfactory answers. It's a very difficult situation, as you well know.
Two years ago I developed sudden intense abdominal paind, went to the ER and was diagnosed with acute-on-chronic pacreatitis. So I quit drinking, reduced fat consumption, felt fine after a couple months. Dr said I could ease back into a normal diet so I did and felt totally fine for 2 years. This September I went to an amusement park with the kids, ate a fatty sandwich a buttery soft pretzel and went on some rides. That night I fell into sudden pain, vomited and ended up in the ER with another attack. My doctor says he doesn't know what triggered either attack. I think fatty sandwiches have something to do with it. Now he has me on Creon "to rest my pancreas". Does that sound like a reasonable prescription? Also, is it "normal" for a person with CP to have an occasional attack despite attempts to control fat intake (currently aiming for about 50g of fat per day).
I've not heard of using pancreatic enzymes to "rest" the pancreas, which is not to say it isn't done or isn't rational. Just that I'm only aware if them being used for people who don't produce enough of them on their own.
It's not rare that people with CP have flareups with no evident cause. I assume your gallbladder, if still present, has been evaluated for stones...
thanks for the quick reply. my gall bladder has been looked at a few times with ultrasound and nothing remarkable has ever been observed. It seems that the more time passes, the more my doctor feels like an idiopathic diagnosis is appropriate.
I've done loads of web searches for information about use of Creon to "rest" the pancreas but I've come up empty handed. I just wonder if the pancreas receives feedback from the digestive system as would be provided by the presence of Creon. If not then it would respond the same to food regardless of the presence/absence of the creon (which happens to be very costly). Do you know if such feedback would be reasonably expected?
Doubt it. There are such feedback mechanisms, for hormones, such as thyroid hormone, sex hormones, etc; but I'm unaware of such a feedback loop for pancreatic enzymes. There is, of course, for insulin from the pancreas. But entirely another kettle of fish.
If your doctor knows something I don't, it wouldn't be the first time it's happened.
So how does a pancreas "know" what's entering the gut? I've been told to avoid fat since that's hard on the pancreas (i.e., requires more enzymes to digest). Is there some mechanism through which the constituents of the chyme prompt a specific response from the pancreas or does the pancreas simply get turned off and on whenever the stomach empties regardless of what I've swallowed?
Excellent question, Stephen, forcing me back to my med school days to dredge it up. Fact is there are all sorts of feedback mechanisms in all sorts of places in the body; the gut and the pancreas participate actively.
When food hits the gut, and, for that matter, the stomach, there are several hormones, notably CCK, which is the one used to test gallbladder function in a HIDA scan, a long with a few others. They stimulate pancreatic secretion, and gallbladder contraction.
I don't know that it's "harder" on the pancreas to secrete fat-digesting enzymes than the ones for proteins; again, if your doc knows something I don't I'd not find it astounding.
Here are a couple of links, which I'm too lazy to HTML-ify for you:
http://www.ncbi.nlm.nih.gov/pubmed/2644146
http://www.ncbi.nlm.nih.gov/pubmed/3953805
http://en.wikipedia.org/wiki/Cholecystokinin
from what i've gathered, the notion is that when your food has been digested, the signal goes back to your pancreas to say "turn off". Fats digest more slowly so they prolong the duration of pancreatic activity. if enzymes are supplemented then the digestion process should go a little faster and the pancreas get's "all clear" a little sooner than w/o the enzymes.
One October, out of the blue, i developed severe chest pains. as an active mid 30's guy in good health i was freaked out by what seemed like a heart attack so I went to the ER. After a lot of head scratching, the diagnosis was pericarditis. i was prescribed steroids and took them for a couple of weeks and everything turned out fine. weird. so then two years later to the day i go back in to the ER with pancreatitis. several dr's, lots of blood work, a bunch of images later and i get the idiopathic diagnosis. I was told to go home, eat light and don't drink. so that's what i did with only tiny excursions (one beer here or there). all was good for two years and then wham. October comes around and i'm back in the er with pancreatitis again.
my dr thinks my pancreas just makes stones, they clog the duct, the enzymes back up, i go into acute pancreatitis, the stone passes and i'm back to normal.
my wife thinks i have lymes disease since i spend loads of time in the woods building mt bike trails. i dunno what's going on but this thing about every two years having a nasty "itis" is a drag. do you have any hunches? autoimmune maybe?
No hunches. I don't like to get into the diagnosis business online. But I'll say that in my experience, and knowledge such as it is, the sort of stones that cause pancreatitis and pass are those formed in the gallbladder, passing into the bile duct. Calcifications can occur in the pancreas, but as far as I know they stay there.
gI was born with an annular pancreas that caused a complete obstruction of my duodenum. I had surgery at 5 days old to remove the obstruction. In my early 20's, I begin to have bouts of pancreatitis. I am now 44 and have been diagnosed with chronic pancreatitis. This year alone I have had 5 er visits and 1 hospitalization. I was seen at the Mayo clinic in Rochester, Mn in 2012. They did not have a lot to offer me. Said I was not a good candidate for surgery because of previous surgery. I was just seen last week at the Mayo in Jacksonville and they are saying I need surgery. Either puestow procedure or total pancreatectomy with islet cell transplantation. I meet with the surgeon tomorrow to hear his recommendations. My GI doctor doesn't think the puestow will be an option as he feels there is only a small amount of pancreas left and not enough to be able to attach to anything. I do not feel as though I will be on board with the pancreatectomy and islet cell transplant. Everything I've read says that this is not for me. Removing the pancreas seems like a drastic measure. Even though I have suffered with pain quite a bit, and my life has been altered in many ways, I just think this surgery would be even worse. Any advice or experience with people who have had this done and if they have any regrets?
I think the surgeon's opinion about your options will be more useful than that of the non-surgeons. Having had previous surgery can make it more difficult but won't likely exclude the possibility. Similarly, whether you're a candidate for Peustow or not depends on the anatomy of the pancreatic duct.
You're as aware as I am that chronic pancreatitis is a pretty bad hand to have been dealt. I had good results with Peustow, but I never had a patient who'd begun with annular pancreas. Nor have a done a total pancreatectomy for the disease; but I know it's a reasonable option in the right circumstances. I'm old enough that islet cell infusion was in its infancy when I was in active practice. I think it represents a significant advancement.
I'm late in answering your questions, and for that I apologize. I assume they've been dealt with much better than I did; I'd love to know what you learned and what you've decided.
Hi DR Schwab
Are you still available for questions/answers regarding chronic pancreatitus
I still try to answer questions and respond to comments.
Hi! Always glad to find docs who appreciate the seriousness of pancreatitis. I am in the ER often for pain and nausea control and once in a while, I come across that one doctor who insists "it's not that painful" or "if you are THAT miserable, you should be crying/taking pain meds regularly".
I have recurrent pancreatitis secondary to type 1 sphincter of oddi and symptomatic pancreas divisum. Had a chole (made things worse) and 3 ERCPS (manometry pressure is 6times higher than normal) so far but after a few months, there is stenosis of the duct.
Partial removal of the pancreas has been suggested for sometime in the future. A 4th ERCP is on hold because the subsequent acute pancreatitis attacks get worse with each procedure.
Have you dealt with a similar case? I am always looking for ideas to share with my docs as we wait to move forward. Thanks again for your article.
So much of treatment planning depends on the specific anatomy of your ducts that I can't say anything very specific. Surgical sphincterotomy is one option, depending on the anatomy, and is likely to be more durable than endoscopic papillotomy. In addition to resection of pancreas (of varying amount), there are also drainage procedures, as I described in the posts, such as the Peustow operation, if there's suitable ductal dilatation.
Not many surgeons in community settings have a boatload of experience in such things; if you want a more comprehensive and expert opinion I'd suggest that, assuming you haven't already, you arrange consultation at a tertiary care center. Depending on where you are, that could be a university hospital or a specialty referral clinic, of which Mayo is a well-known example, but far from the only one.
Thanks for your response, Dr. Schwab.
Yup, had sphincterotomy with all 3 ERCPs and temporary stent placement. Symptoms improved for a while after each then came back and when they went back in, the duct had narrowed again. I do have a skilled GI at a major tertiary center but it never hurts to get more info :)
By the way, in response to a post about pancreatic enzymes. They have been so helpful, at least for me. I did learn that sometimes scans (HIDA, MRCP) do not catch the problem. Prior to my 1st ERCP, all my imaging studies were normal but GI went in and found the divisum and the almost closed pancreatic duct.
Thanks again!
Hi,
I recently had a laposcopic cholecystectomy some months ago. Pre-existing chronic pancreatitis with exocrine failure/steatorrhea and chronic pain, plus lots of small gallstones which formed after development of CP.
Immediately after the lap whole operation, I developed severe constant reflux and stomach/throat pain, and have been diagnosed with bile reflux and bile gastritis and also bile acid diarrhea. Currently taking PPI, gaviscon, bile acid sequestrant to seemingly minimal effect for this.
The only operations I have found that appear to offer hope is the duodenal switch (suprapapillary duodenojejunostomy), which as far as I can tell is performed rarely in a few places globally and the roux-en-y gastric bypass, which appears more radical in some ways but performed more generally although possibly not as effective. Given I already have maldigestion/malabsorption due to CP steatorrhea, further exacerbated by bile acid diarrhea, are these operations viable for me as presumably that will worsen ? Any thoughts or suggestions would be gratefully received.
Thanks
Much as I'd like to help, I really don't feel right in making specific recommendations for people whose situation I can never know as well as those in direct contact. I'll acknowledge it's a difficult situation, and that there are several surgical options, including one or two you haven't mentioned. When that's the case, it's best, if possible, to connect with a surgeon who has lots of experience in the area. Often that means going to a "tertiary care" institution, meaning one that receives lots of referrals from other places. University hospitals, for example.
In my experience, duodenal switch and gastric bypass are primarily used as weight-loss procedures. To treat esophageal reflux might require an anti-reflux procedure in addition to whatever diversion is chosen to address bile gastritis. Deciding which operation or combination of operations, as I said, requires knowing your situation in detail, and the input of a surgeon experienced in such situations. Nowadays there are some surgeons who've done extra training in "biliary-pancreatic surgery." You might want to seek out such a person.
Thanks for replying so promptly. I understand you can't give specific advice but what you've said is helpful. Thanks again.
Hi,
I was diagnosed with acute pancreatitis grade D two months after delivering a baby boy. Doctor said it's post-partum pancreatitis. Main cause is progesterone hormones playing their part during pregnancy. I would like to know if i can plan for second baby? Is pregnancy is advisable?? What precautions should be taken? thanks doc
I'd say the most important thing is to rule gallstones in or out, since pregnancy can cause them, and they're a frequent cause of pancreatitis. I assume that's been done. If not, it should be. Beyond that, not knowing the severity or details of your episode, I hesitate to make any recommendations. It's one of those things best discussed with your own doctors.
Hello Doctor,
I'm so glad I found your blog. Here is a synopsis of our story: in June of 2015 my husband was admitted to the ICU due to pancreatitis. His kidneys shut down, he was on life support and a coma was induced. Long story short, the condition worsened and his pancreas became necrotic. There were several other complications but he eventually pulled through. He was admitted to the regular hospital ward where, for some unknown reason, they promptly began feeding him regular food - after being in the ICU on life support, ie feeding tube, dialysis, breathing machine - for three months. He then developed an infection and was sent to our university hospital where he was rushed into surgery to remove most, if not all, of his pancreas. Nobody knows how much is gone because the surgeon says it was such a mess in there he couldn't tell. Fast forward to today, less than a year after his release from hospital (September of 2015), he is doing amazingly well. Considering he had to relearn how to walk after being on life support for months, then immediately having to undergo major abdominal surgery. For the most part, he's been taking care of himself. We've always had a very healthy diet, he takes his medications as required, doesn't drink alcohol (which was the likely cause of his pancreatitis), keeps his appointments and requests help when needed. He has, however, resumed smoking. He's mostly adjusting to his new normal quite well but we have a couple of concerns. Of course, he's diabetic, injecting insulin four times a day as well as taking Cotazym ECS 20 with meals. We think he's found the right amount of enzymes to take. This was an issue initially but seems to be sorted. However, it seems that he is on a bit of a cycle whereby he'll be doing really well and then every 6-8 weeks he'll hit a rough spot. He feels pancreatic type pain and encounters bowel issues - diarrhea, urgency, foul and frequent gas. We do not know what to attribute this to. Is it part of the healing process? Is there something he needs to tweak as far as the enzymes go? Could this be due to a complication of the surgery? We're not exactly sure what long-term complications there are, and therefore do not know what symptoms to watch for. For the time being, we are being extra cautious and he goes to the emergency room within a day or two of experiencing these symptoms. They just put him on IV, take blood tests, sometimes an ultrasound and x-ray then send him home. It eventually goes away after a few days. We have an appointment with his surgeon coming up. Are there any questions you can think to ask him based on these symptoms? Any tests we should request or possible complications we should get clarification on and look out for? The care from the surgeon and his team was top notch. They saved his life and were amazing with his care while in hospital recovering, but he was released with very little info about what to expect. We've mostly been winging it and there is not much information out there regarding his specific situation. Any suggestions of insight would be very much appreciated.
Thank you.
Wow, what a saga, and what fabulous care he must have received! And how great you and he have been since then.
I'm sure his surgeon would have much more relevant and particular thoughts than I ever could from this far away. As you suggested, it's possible that additions or changes to his enzyme regime might help; I assume you've been trying to determine if any type of foods are associated with his symptoms, too. Intermittent partial bowel obstruction from adhesions related to his operations is a possibility as well, although I'd expect the pain to be crampy, and usually there'd be abdominal distention during the episodes. Again, I'm sure his surgeon would have better insight into the possibility than I could.
My intention for this blog has always been to tell a few good stories, provide general information; to entertain, and to give a look into the life of a surgeon. I can't be very helpful for specific issues people have. I wish I could, but it's really not possible (or, probably, ethical) to try to do so. I wish you well, and, again, share my admiration for the care your husband received and for the way you have adjusted to the new reality.
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