Just received a request for assistance from a reader who is not receiving the best treatment from their doctor/s. This response (see below) to an earlier post is so typical of the plight of so many with pancreatitis, isn’t it! We’ve written about this situation before - will make sure these articles are included in this blog. In the meantime, if anyone would like to comment and offer some further advice please leave a comment.
All the best everyone.
Bill
“A month ago I was hospitalized for two weeks with severe pancreatitis and gallbladder stones. After two weeks of no eating or drinking I finally was sent to surgery and my gallbladder and lap-band (of 5 years) was removed.
Two days after returning home from the hospital severe abdominal pains started, mostly down in my right pelvis area. I have been to the ER 3 times since coming home and have been diagnosed with diverticulitis (and undiagnosed), degenerative disc disease and high lipase levels that after one night in the hospital lowered to high-end normal.
My question is this: Are there any of you out there that suffer with this disease, only have pain in the abdominal/pancreas area or do you sometimes have it all over? My pain at first felt like a hot poker was being stabbed in my left hip. Then last week the pain has shifted to my right lower abdomen. This week I feel like I have been punched with an upper-cut by a world prized fighter right under my rib cage. I have been sent home with Lortab which does little- to- nothing for the pain and I have been put on steroids being told that my degenerative discs were causing the abdominal pain. The prednisone course is done and I am still in pain. I’m to the point that I feel as if I am going to have to self treat this because my doctors here in my small community write me off as being nothing but a hypochondriac. I’ve had one Dr. tell me it will take months to get over, while another doctor the same day tell me it’s not my pancreas because I only had an attack because of my gallstones, and not one health professional has given me any feed back as to what to eat, how to live, or information on what this disease is. I feel as if I am going crazy!
I just feel like I am going out of my mind. Any stories of your pain symptoms would be greatly appreciated!! I have purchased each of the three books and am on my way to living with this but trying to make intelligent decisions in my care and see if I really am going crazy or not.”
MY EYES ARE TOO BAD TO READ MOST OF WHAT THE SMALL PRINT SAYS IN THE ABOVE BUT MY DAUGHTER, WHO HAS PANCREATITIS AND IS BEING CONSIDERED FOR A PANCREATIC TRANSPLANT WOULD LIKE VERY MUCH TO HEAR FROM OTHER SUFFERERS WHO HAVE UNDERGONE THE SAME PROCEDURE, SUCCESSFULLY OR NOT.
RUTH
Comment by Ruth Conley — April 12, 2009 @ 8:04 am
I feel with you, cause my husband is going through hell..and it’s been going on since last August, when they diagnosed him with a diverticuliltis…and later with acute pancreatitis. He’s been in and out of emergencies for 4 times since……..and still in worst shape than before. He lost 50 lbs. and can’t eat ANYTHING. He’s in constant pain. Only morphine helps, but he can’t take that forever……we need help, and I really don’t know where to get it anymore.
Some suggests a firm carbohydrate diet…is that a low or high carbo diet ??
appreciate any input
Jacky
Comment by Jacky — May 10, 2009 @ 10:31 am
Our heart goes out to you too Jacky. Yes, a high carbohydrate diet (or more importantly, a low fat diet) is generally the best for pancreatitis sufferers. Not refined carbs though. Stick to the natural as much as possible - grains, vegetables and the like. Maybe try some of the recipes in ‘Cooking Hints and Recipes for Pancreatitis’ and keep notes of responses.
Keep in touch.
Best regards to you and your husband.
Jenny
Comment by sankey — May 12, 2009 @ 9:07 pm
I have been diagnosed with acute pancreatitis today, May 21, ‘09. I also have degenerative disk disease and have been putting off surgery because of the acute pain in my stomache and gall bladder area. The pain can go on for 2-3 days with NO relief for even 5 minutes. My Dr. also isn’t sympathetic, says I caused it on my own? The Dr. also said I should of died Mon. or Tues. and said I must have an Angel on my shoulder, but that does nothing for the Pain. Since I am new to this Disease, I will make this short and start doing some research. I will post any info. I can get to share with anyone.
Ron
Comment by Ron — May 22, 2009 @ 1:45 pm
Just finished your book. Tremendously helpful. It is clear that one of the keys is finding the right doctor. Can we have a discussion about HOW to do that? Real specific. Nitty-gritty. \\\\”I found a helpful doctor by doing 1. 2. 3. 4. 5. \\\\” The General Practitioner doctor that I see is less knowledgeable than I am about pancreatic flares… so he is no help. I probably need to find another General Practitioner that understands the condition, but how do I do that? Are there websites? Databases? I need some suggested first steps…
Comment by David Kotfila — May 25, 2009 @ 8:48 am
Hello Everyone,
I too, have what they think is Pancreatitis..yet still the docs are unsure. I myself went to three different hospitals before I found someone that I was happy with and treated me well. I spent over a month and half in the hospitals total..still in a great deal of pain. Trying to avoid narcotics due to the ill effects, yet when the pain is bad the only recourse is Dilaudid. I too am looking for some answers, diet..treatment..? I am at the point now that I am vomiting everyother day or so and fighting bowel issues..no end seems to be insight. Although I am happy to have found this sight..thank you all for your input and insight. Keep it coming.
Betsy
Comment by Betsy — May 31, 2009 @ 1:43 pm
Hi guys,
Sounds like we all have similar horror stories. I have been a pancreatitis sufferer for about 15 years. My gastro guys tell me I have chronic pancreatitis but we can’t seem to figure out why or what sets it off. The only thing I know is the very specific pain under the rib cage and then the nausea and vomiting. You can’t sit up or lay down..no position brings relief. You almost feel like sticking your finger down your throat because if you vomit it might feel better…but it doesn’t. When I feel it coming on I go directly to the emergency room so I can get a shot of dilaudid and and shot for the nausea. They usually triage me right away and I seem to get sympathy from emergency room staff who seem to know how painful this is. Because I am diabetic and usually de-hydrated when I get to emergency it takes them about 1 to 1 1/2 hours to get an IV in me so keeping hydrated is very important. I know it’s hard to eat or drink anything when the pain comes but getting the IV fluids is key and you can’t get pain meds or nausea meds or fluids without the IV. When I got an attack in Orlando 10 years ago, they were sure it was my gall bladder so they took it out. I was hoping that was it too but I really knew it wasn’t. \\
I think the doctors know more about it now so you have to find one that has a handle specifically on pancreatitis and can empathize with you. You can’t treat yourself or at home. As I said the IV fluids and pain meds are key to calming the pancreas down and then slowly liquids, then soft diet, and slowly back to regular (low fat) diet…in the hospital.
My doctor says diet helps but genetics also plays a role…so you can’t beat yourself up thinking that you are causing it all yourself. This is a terrible and very painful condition. Supportive family and friends help. Keep a list of all the meds you are taking and update it all the time so if you get an attack and go to the hospital you can give them the list. Sometimes you can hardly talk when you get there. Go over it all the time with your doctors (all of them) to make sure you are not taking something that wll set the pancreatitis off. Each doctor prescribes for his own specialty and may not be aware of what the other doctors are prescribing.
when i first got this the doctors had no idea what the problem was and tossed it off as gall stones. As I got other attacks, they seemed to get frustrated because they didn’t know what it was. As the years went by, i was lucky enough to find a gastro guy who did know as well as a primary who was familiar with pancreatitis. When I got diabetes, it was the endochrinologist who first diagnosed Pancreatitis.
With so many people havng pancreatitis, I think the doctors are now more up to date on it and recognizing and treating it.
Sorry to be so long winded on this, but I feel for those who are going through what I did and want you to know there are more of us out here who understand what you are going through. Don’t give up until you find doctors who know what they are doing.
Good health to you all …………..Marge
Comment by Marge — July 12, 2009 @ 9:54 am
My father has been in intensive care for 6 weeks now. He has severe severe pancreatitis. The surgeons have debrided part of the pancreas. Last week he has had two major bleeds in his stomach, coming from his pancreas. For the past week, no more bleeding returned. He seemed to be making progress. His other organs are recovering - heart is great, blood pressure good, kidneys are recovering, liver recovering, lungs good, he is breathing on his own for hours without his ventalitor, however earlier this morning he bled again. Thats his third bleed. The doctors cannot give yes he will make it or no he won’t make it. I wish there was something I can do. I want my father back at home with us, I miss him so much. He is my life. I feel like trying to find the most specialised doctor in pancreas - but I don’t know how to go about it, and if one exists. I need to do something. I want to save my father. I need to know that my father can survive (if possible) from the bleeds, if his other organs are recovering, improving?? Anyone can shed some light.
Thank you,
Susana
Comment by Susana Lopes — July 12, 2009 @ 2:07 pm
I too, understand the frustration you are all going through. It took them 10 years to diagnose my pancratic divisum and chronic pancreatitis. I now have to have a ERCP with dialation every 6 months which usually puts me into an acute phase for a week. They tell me this is my best option, although I still have regular attacks. If anyone has better options I would love to know about them. I would have surgery in a heartbeat if it was a longer lasting relief.
Comment by Edna — July 16, 2009 @ 1:20 pm
Ten years ago I had an 2 attacks that was blamed on drinking..I kept telling Docs theres somrting wrong with my stomach..Found a Doc who then found a very bad gall bladder.. Had it removed and no trouble till may 09..Ended up with a hernia and panc. attack, 2 again. had hernia fixed and was in and out of hosp. 6 times.. had every test and couldnt find anything..Found out that more people take drugs, oxycodone for pain and other things.. I can only figure that the hernia and or the oxycodone that I take for pain brought on these new attacks..More and more people are getting attacks because of drugs..anti biotics can start an attack, and those that end with quill at the end..But know this, Stay away from meat, burgers and anything else with beef in it.. No alcohol, no coffee. no fried food of anykind and chocolat.I started my own treatment with aloe vera and grape juice with cranberry, 3 times a day..2 ozs aloe and 4 ozs juice.. get gel aloe, not juice.It does help.Also eat plain yogurt for snack.. try this for a week or two..Dont know when the attacks will end this time.good luck..
Comment by Robert Rutkus — July 25, 2009 @ 10:28 am
hi everyone,
I also have Pancreatitis!…..and I Got diagnosed with it 5 years ago.
it is one of the most painful things i’ve ever felt. all i do is throw-up and cant move…..I have gone to the ER so many times because of pancreatitis. in the first year i found out i had it………i weiged 145 lb. and within 8 months i went from 145 to 105 lb. the only thing doctors would tell me to do is not eat anything and give me pain meds. Dilaudid is the pain medication that they give me as well and it works great but i dont want to be on it forever! i just want to know what diet i can DO or what i can do to control it…i cut back on fatty foods and so many other things but it keeps coming back. I know God is the only one that can help me now God has been the one to keep me going through all of this …..but if there is anyone else that can give me some TIPS on how they deal with it ..that would be a big help for me!!!…..cuz trust me i know how u ALL FEEL! I think i drive my husband crazy because he dont even know what to do anymore when he sees me screaming and crying with pain! i got sick of going to the ER …so i try to just take the pain meds. and ask God to help me deal with it at home! =0(
Comment by vanessa — September 17, 2009 @ 2:47 am
H everyone!…..my name is vanessa and i have been living with pancreatitis for 5 years@ snd the Doctors believe the i got it passed down from my grandma nana. it is the most painful thing i have ever felt so far. the only things doctors tell me to do id not eat when i have an attact of it. so i tried to stay off things that set it off, but not even that works sometimes. i have prayed and asked GOD to give me the strength to go on with my like living with these pains and the only other thing the Doctors have given me for medications are Dilaudid 4mg. amd Protonix for my acid-reflex. and yeas they do help but i dont wan t to be on it forever! so if there is anyone that can give me some Tips on how they live with it and how it helps them ,then please let me know…that would be great…….God has been the one to keep me going throught these hard times so far and i know he can heal me by faith but as for now if ther is anyone that can help me , and give me ideas on how they make it through all this then please tell me so that i might try it!!…..Thank You very much! b-cuz trust me i know what u go through and the pain .on how much it can hurt! i’ve beem to the ER soo many times that i owe soo much noney already!…..i just want a way to controll this sickness! so please help me!!!!…i know u guys have to know how i feel……..THANK YOU!………..~VANESSA~ =0)
Comment by vanessa — September 21, 2009 @ 2:50 pm
My granddaughter’ s husband is 34 yrs old and has been suffering with acute recurring pancreatitis for 2 years and is getting much worse fast. He has been in the hospital nearly all of Sept. He has been accused of all sorts of things to try to get pain medication. He was even told at one hospital not to come back because they didn’t know how to treat him. His disability has run out and now has no income. He was denied SS disability. Finding a doctor that will try to help is a big problem. He is very depressed. The whole thing is really tragic for people to have such terrible pain and no one seems too interested in trying to help. The doctor now does seem to be interested but the medical bills are impossible to deal with.
Comment by Shirley Nolan — September 24, 2009 @ 7:27 am
I too have idiopathic Pancreatitis. I was first diagnosed in July 1999. I have recently had another relapse in May 2009. It has gotten to the point where I needed to get a feeding tube because I lost over 20lbs. I have constant nausea and pain for which I take Zofran for the nausea and Percocet for the pain. I try not to take the Percocet unless the pain is out of control. This is a tough disease to have because there is not much they can do to help relieve the symptoms. I am on a low-fat diet and I do not drink. They never could find a cause for my pancreatitis. I am hoping that someday with the research, they may get closer to finding a cause?
Wendy
Comment by Wendy Oliver — September 26, 2009 @ 1:09 am
Hi, I’ve been diagnosed with a “mean case” of chronic pacreatitus since Dec 08. I know how all of you feel, sometimes you’re not sure if you can make it another day, but alas you do, cause you are reading this. I’ve found the following helps my stomach, fresh squeezed grapefruit juice. Somehow, it helps my stool return to normal. After months of trying everything and anything this helped me. I’m now able to tolerate chicken and rice soup (no perservatives).
I also bought one of those emulsifiers from Monteil Williams ($250.) and any vegetables (broccoli, potatoes) that are boiled (witht he skin on) and kept in the water and transferred to the machine are whipped up taste delicious. I also add tiny bits of hard parmesan cheesealong with table pepper and the soup stays inside the body for a longer period of time (no dumping!).
Drink only distilled water. Where I come from there is way too much chlorine in the water. Keep a pitcher of tap water in the refrigerator over night and in the morning you can drink it.
Make sure you take a “chewable” multivitamin as the absorption is best. Take fish oil and cq-10 enzymes.
Good luck to every sufferer, I’m with you! and God is with me.
Comment by Cynthia T — October 6, 2009 @ 2:51 am
Hi, me again. The Dr.s have changed my diet again! Please don’t drink the grapefruit juice as indicated in my earlier message. The docs believe it has too much acid, and this can cause many other problems. Sorry for bad advice.
CT
Comment by Cynthia T — October 8, 2009 @ 5:54 am
Hi again, the docs ask me to take the following: 3ml of DanActive mixed with 6ml of Kefir Organic milk 2 x per day. This seems to work, but feels real weird in my stomach. Both items can be located at Natural foods markets and maybe your local grocery store. Please give it a shot as it is considered “homeopathic” and should not hurt your stomach, but help with inflammation and IBS.
CT
Comment by Cynthia T — October 8, 2009 @ 5:59 am
Thanks.what a lengthy and in depth article but full of useful information
Comment by dmdmdm — October 13, 2009 @ 4:56 am
In April I was hospitalized for 10 days. It started with a gall stone that came out of the bladder and got lodged in the bile duct. They did the endoscopic procedure to clean out the bile duct. One of the unfortunate possible side effects is pancreatitis. I’ve fought it every since. I get to the point sometimes that I don’t want to eat and for a recovering anorexic of 7 years, that’s dangerous. I have pain under my ribs on the left side as well as in the pelvic area. I lost my job and can’t afford to go to the Dr. It’s very frustrating.
Comment by Julie — October 22, 2009 @ 4:10 am
I highly recommend Dr Douglas Howell in Portland Maine. I know that you all dont live in maine, but it’s worth the travel to get fixed.
Comment by Erin — October 23, 2009 @ 7:28 pm
Hello everyone.
Well where to start from during my journey of what is now Chronic Pancreatitis. In the past 18 months I have been hospitalized 3 times for what started out as Acute Pancreatitis and now these episodes have caused some damage to my pancreas and that is why they classify it as Chronic now instead of Acute. I am on so many different types of medications to try and lower my triglycerides. My triglycerides are what caused my pancreatitis. The last time I was admitted into the ICU my triglycerides were at 18,000 and my cholesterol was at 1064. Yes, you are reading those numbers correctly.
As you read through some of the stories above, you will notice that there are numerous reasons for individuals to develop pancreatitis. In the past 18 months I have done so much research on this issue, I guess I would consider myself a “know it all”, but just on this topic.
Some of the reasons are: Gall Stones, Alcoholism, Some Antibiotics and Birth Control Pills, High Triglyceride levels, pregnancy, and hereditary (rare).
Individuals who develop pancreatitis due to gall stones are more than likely, once the gall stones are removed, to never have to deal with pancreatitis again. Yeah you guys.
Individuals who develop pancreatitis due to Alcoholism can prevent pancreatitis from reoccurring if you can refrain from all alcohol. That means all, not just one here and one there, it means all alcohol. If you choose to not refrain from alcohol, you will live with this for the rest of your life. At least these people have a choice.
Some antibiotics and Birth Control Pills can lead to pancreatitis but are not typically the cause of this. It may be an underlying additive but typically not the sole cause.
High Triglyceride Levels (This is my problem). HTL levels above 150 are concerning. My doctor once told me that if we can keep my levels under 2000, he is comfortable with that. I am completely happy with that as well except for the fact that keeping them under 2000 would require me to be dead. Not really a choice for me. So there are a myriad of things available to help with lowering these levels. Oh and by the way, don’t let the doctor get away with just checking your lipase levels, make them check your actual triglyceride levels. Lipase levels may only show a little elevation even if your triglycerides are sky rocketing. Things that really make your triglyceride levels go up are sugars, complex carbohydrates, high in fat foods, high in calorie foods. So pretty much get used to apples. Just kidding. There are a lot of foods out there that would be conducive to a pancreatic diet. Pancreatic Diets are very very similar to a Diabetics Diet.
Pregnancy can also cause pancreatitis but fortunately for these women, once you give birth, the likelihood or ever having pancreatitis again is almost zero.
And the last is Hereditary, which as you saw above, is the most rare way to develop pancreatitis. If this is the type you have, the choices are far fewer on how to solve these episodes but watching your diet, exercising and utilizing prescription enzyme enhancers can make you episode free.
I have a lot to write about especially regarding my experiences and current episode of pancreatitis, so I will be writing more over the next few days. Please feel free to comment back or ask questions, like I said I have done so much research on both acute and chronic pancreatitis that I can probably answer most questions. Also, there are two hospitals that specialize in lipid treatment and diagnosis. They have a lot of good information on these web sites especially for those considering surgical alternatives. The first one is the University of Chicago Medical Center: http://www.uchospitals.edu/specialties/pancreas/
And the second is the University of Cincinnati Pancreatic Disease Center: http://www.ucpancreas.org/
I hope this starts to help out with some questions and I will write in soon. Sincerely, - Megin
Comment by Megin Y — October 27, 2009 @ 2:14 am
I experience a lot of abdominal pain, that turns out to be mostly constipation. My doctor tells me it is from the oxycodone and I try to hold the dose down however I have problems with 5 discs in my back and just to make things worse I have sleep apnia.
I have to sleep with a mask on and usually try to stay on my back but the constipation and diviticulitis make strange bedfellows.
The emotional part is starting to take its toll and I know I am doing the best I can. So if this is of any help, I have not had a drink in over 27 years. It was not my doing but the direct result of me surrendering the drink problem over to God. He took the desire right out of my life. I find that praying for relief give’s me more strengh to fight taking more of the pain medications than I absolutely need.
Hope this may help some one.
He can do what I can’t.
Bill A.
Comment by Bill A. — November 24, 2009 @ 2:41 pm
Hi, I was finally diagnosed last Fri. after I had the Ultra Sound Endoscope. They also put a pain block into the Celiac something nerve in my back thru my stomach. The shot is supposed to last maybe 7 months and then they can do it again. I am still waiting for it to kick in. They said it may take a couple of weeks to start helping so I can cut down on Lortab or hopefully do without it completely. I am also on Viokase 16 enzymes and a few other meds. It took a year and a half to get the diagnosis. I have been basically homebound the whole time except to go to doctor appointments. My husband has had to do all of our shopping. I want to be able to go shopping ssooo badly! Riding in the car makes me feel worse even when I dope up on pain and anti-nausea medicine. I have lost 58lbs, obese to begin with so the losing weight was the only good thing that came out of all of this mess. I had to go thru a lot of tests and doctors to find one that actually thought it could be my Pancreas. I had my final test done at Indiana University, in Indianapolis. I guess that proceedure is done too many places. So now I am hoping the Enzymes, pain block and new way of eating will give me back my life. Good luck to us all with this terrible defect! Chronic Pancreaitis.
Comment by Sandy — December 17, 2009 @ 2:44 am
Hello, I don’t know how yopu guys feel as I have never been through this, though I am watching my boyfriend go through this he has been hospitalized one week out of every month since May of 09. I have done so much resaerch on this I probably know more than his doctor, who does nothing but treat the symptoms once he’s addmitted to the hospital. I talked to a lady that had this same exact thing happen to her and they fianlly for some reason took out her appendix, and she hasn’t had a syptom in 4 years. She still doesn’t know why she didn’t even a single symptom of appendicis, but it worked, of course his doctor thinks I’m stupid and there’s no way that will work. Also for those you who are desperate and no one can help you check into this, they are doing wonderful things towards finding a cure and it might give you hope. It is UC Pancreatic Disease Center. If only his doctor will send him there instead of Indianapolis. If you are having these issues and do check into this place please let me know if they help you.
Comment by sarah — January 13, 2010 @ 12:41 am
I had systems long before I knew what was really wrong. I have had bleeding ulcers and diverticulitus for years and just though I had an ulcer again or the flue. Threw up for 4 days and went to E.R. I was lucky the E.R. doctor ordered an x-ray of my chest and stomach. My pancreas was swollen in the x-ray which led to more test for pancreatitus immediately. Immediate I.V. with antibiotics. Strangly though I have not had the pain that everyone else has “thank you my Lord”. I am of course researching like everyone else seems to be. My doctors don’t say much of anything, but are willing to give me pain medication at the drop of a hat! I have only had a dull ache so far? It reocurrs almost daily though?
Comment by Char — January 14, 2010 @ 2:23 pm
On Jan 2nd of this year I went to the E.R. with severe pain under my rib cage and tuned out my pancreas was inflamed and I also had (MANY!) gallstones (also blocking my common bile duct). After a day of letting my pancreas get back to normal, they removed my gallbladder and cleared out my common bile duct. I was sent home with no food instructions so after 2wks I was back to my regular diet. On Friday Jan 15th I went back to the E.R. with the same severe pain/nausea/vomiting –this time worse than the last time. My lipase level was at 26,000!!! After being NPO for 2 days it gradually down. My doctor’s are not sure what the cause of my pancreatitis was. It would make sense if there was a common bile duct obstruction or gallstones in my gallbladder, but those were removed, and my CT scan showed no signs of any abscesses or anything unusual. I think my case falls into the “idiopathic” category…it’s very frustrating. Now I’m home losing weight due to starvation, I don’t know what I can or cannot eat. And I’m very afraid and wary to eat anything. I don’t want to end up in the E.R. again and I don’t know if I can bare that pain again.
I can sympathize and empathize with all of you suffering from this. God bless you all.
Comment by Rose — January 20, 2010 @ 6:40 pm
Thank you very much for that excellent article
Comment by Degree — January 21, 2010 @ 4:32 am
Five years ago I had and ERCP done at a hopsital in Cheyenne, Wyoming. I had been having chonic pain on my right side and back and the Drs. couldn’t find anything wrong. They suggested an ERCP. We live 100 miles from Cheyenne and after the test (which showed nothing wrong) we were driving home and I developed excruciating pain in my abdomen. I was diagnosed with acute pancreatitus and spent the next 4 months in and out of the hospital. I had tubes in my sides to try to drain the disgusting green substance that was oozing from my abdomen but I became more ill every day. I lost 80 pounds during the 4 months and finally had surgery to remove and drain a pancreatic cyst. I eventually recovered after the surgery and resumed my life. I have been pretty much pain free and like the rest of you was given no information of what to eat or what to stay away from. I was recently diagnosed with chronic pancreatitus and I am being sent to a highly regarded hospital in Denver, CO. But guess what the first test they want to do on me is….another ERCP. Why woud I want to have another ERCP done when my pancreas is unheathy. I almost died from the test when my pancreas was healthy. I noticed in one of the blogs someone had written about the research they had done as to how people develop pancreatitus. Please add anoter one to your list….and ERCP. Has anyone else had this problem from an ERCP? Thanks.
Comment by J.L. — February 21, 2010 @ 1:20 am
My husband has suffered since 1993..1st from acute, then eventually chronic pancreatitis. It was initially brought on my alcohol, but also has a lot to do with diet. After an episode in 2006, I researched the subject and came up with the following info. It’s good to take an antioxidant (a good one); acidophoulos & pancreatic enzymes (naturopathic). We found that this helps a lot to keep the pancreas healthy. Unfortunately he indulged in food and drink at Christmas and ended up having a nasty attack (in hospital for 2 weeks)…. was referred to a digestive diseases specialist at MacMaster Hospital, Hamilton, ON. He did an ERCP and put a stent in the common bile duct leading to the liver. The ERCP produced another attack (right after he had just got the first one settled down). It was excruciating pain, but eventally got a little better. Apparently if it is proven that the stent has helped out, then the doc will consider bypassing the pancreatic and common bile duct (because they are full of what looks like scar tissue from previous attacks) only if he commits to no drinking though. I’m not sure how extensive the surgery will be, but anything is better than going through that pain. He’s lost about 20 pounds over the last year and needs to be able to eat healthily again. I did find out however, that way back when he started having these attacks, the doc prescribed losec and at the time he was also on an antibiotic for his complexion… and after researching the side affects of these meds come to realize that they are known irritants to the pancreas…. meanwhile he had taken them for 15 years. When he went to the doc about this, he told him that there wasn’t enough dosage to cause a problem. “Excuse me” after taking them for 15 years? did he think we were totally dumb?” Anyway he doesn’t take them any more. Instead he takes the acidophoulos for digestive help. My naturopath told me to tell my husband that he’s very fortunate that I researched all this stuff and got him on a daily regimen as stated in the first paragraph. Anyway, I have such emphathy for any of you that is going through this disease and wish you all the best. Just remember to be your own advocate. Take care!
Comment by Helen — February 24, 2010 @ 11:02 am
hi, I was diagnosed w pancreatitis 2 years ago due to gallstones. Lost 80 percent function and had a portion of the pancreas removed due to a pseudocyst that formed on my pancreas. I’m sure they have done follow up catscans on ur pancreas but if not u should ask them to make sure u don’t have a pseudocyst, which are just as painful as the pancreatitis itself!!
Comment by amy — March 18, 2010 @ 2:12 am
Hi, I suffered a gall bladder attack Sept. of 09. turned out I had several gall stones in the common bile duct, near the pancreas. Hospitalized, then 24 hour NPO and surgery removing gall bladder and stones. All but one, the surgeon missed in the CBD, I was in hospital a week, went home with lipase level under 250. Told to eat no fat and no milk and all liquid….Let pancreas rest. Then one week later, the little stone the surgeon missed had been festering inside the CBD, perforating the pancreas and bile duct. It hit me after eating some tomato soup. Back to the hospital via plane. Diagnosis, acute, then re-diagnosed as chronic pancreatitis. Another CT scan shows two psuedocysts on pancreas. Stay 30 days in hospital on pain drip and TPN for nourishment. No foods whatsoever. Got out and went home with TPN in tow and spent the next 90 days on TPN. My 14 year old son took care of me while my daughter cooked for him. I have lost 70 pounds. I know that sounds like a lot, but I was tipping scales at 230. I am only 5′8″. The surgeon says my last CT scan shows the cysts are reducing in size with my drastic change of diet and exercise. I am in constant pain even today. I am scared to go to the ER again. I know longer care for my current surgeon as now I have been diagnosed with diverticulitis. I have since learned through a nursing friend that diverticulitis can be the result of a pancreatic or gall bladder attack. In fact, there is no truly known reason, as with non alcohol related cases of chronic pancreatitis, for that terrible disease either. My diet has been a learn as you go kind of thing….And the one thing I can tell you is don’t eat any kind of seeds….Poppy, sesame, rye. mustard, tomato…anything like, no more red meat or fried foods, that knocks me right into an attack. I know my insides are going to fall out, but no one has the answers I am looking for. I guess the next step is try and find a nutritionists that might could help. But as it goes now I don’t take the pain medication, I already take 11 other medications I am told I have to in order to live. I don’t and never have drank alcohol. So, that makes my case idiopathic?
I know I seem to be ranting, but it helps not to think about the pain. This pancreatitis just tops the cake when I already have numerous other health problems…Like COPD, CHD, triple bypass, degenerative disc disease,C3-4-5 fused, artificial knee and shoulder and had the right foot re-attached. So, when I get up tomorrow and feel that ever so sharp pain under my right rib cage, get my daughter off to school, get my son started on his school, walk the dog and enjoy the view of Diamond Mountain, Sierra /Nevadas’, I will take a minute and thank GOD one more time for letting me enjoy this bountiful Earth. I know each day is a blessing, because the pain gets worse and the rumbling in my tummy gets louder. Funny thing is the 20% of pancreas that is left functioning is apparently doing so as it should even with all the pain. My blood sugar averages between 70 and 110. Blood pressure nearly always steady at 120/70.Go figure, my blood work comes back normal as well.But like the rest of the sufferers, it is played out day by day. Some good, some not, some mixed, yet we and our loved ones have to live with this horrible disease. I like to find something positive even with the worst situations. The weight has just melted off. not eating solid food for 100 plus days will help there. Keeping it off is a small challenge. Managing the pain is a big problem. I quit taking the narcotics and now smoke medical grade marijuana. It helps soothe the pain for myself better than anything else the doctor has recommended. I am sure comments and results will vary by individual. With Grace on my side I hope to beat this disease as non-invasive as possible. If cysts continue to reduce in size then maybe a simple surgery down the throat may be all that is necessary. remember, I am trying to stay positive. I believe the new doctor mentioned me taking some kind of enzyme capsules with my meals. If it will help me stop losing weight and quit hurting so bad less often I am up for a try.
To all of you suffering or to those of you that have suffered or knows someone who has or have lost a loved one to this relentless disease; May GOD bless each and everyone of you and everyone else who needs HIM in there hearts!
Comment by Bmul — March 25, 2010 @ 6:26 pm
i had acute pancreatitis for two years it got so bad the enzymes would go out of control they would have to put me on a morphine drip, after a number of times in the hospital the took me by ambulance to a bigger hospital that had a specialist that could do this procedure he put me out and went down through my throat and incerted a stint in the common bile duct.then about 2 monthes later they took my galdblatter out then went back in about a month later and took the stint back out that was in december 09 no attacks since.
Comment by LaDonna — March 27, 2010 @ 5:55 am