One day (and one bite!) at a time for pancreatitis recovery.

Many thanks to TC who responded to comments in relation to a patients story of recovering in hospital from a bout of acute pancreatitis.  TC tells her story as follows:

November 22 of 2009 I was rushed to the hospital from my desk at work.  I had only eaten a cup of soup. I was there until the 28th after Thanksgiving.  The Docter had me on on morphine  every 4 hours until I was released with no solid food.  I would try to eat every other day, but even the 1 teaspoon of solid food caused too much pain, even a drink of juice.

I started with 1 sip of water a day and then would add a small amount of juice to the water.  Then I figured out the juice had too much sugar.   I found juice called Healthy Balance with only 5 grams of sugar and good souce of vitamin C.  Hey, no pain.  Next, I started with very soft stuff.  Fish, a Salmon filet baked with a little bit of butter and a little seasoning just salt and pepper.  I could only eat a teaspoon a day.  Then a few teaspoons a day.  It took about a week to eat a small filet, but it was working.

Try it. Don't eat red meat at all and no shell fish or fried food and No drinking.  Don't eat anything unless you cook it yourself. Then, try plain rice with a little bit of butter, then try beans.  Bananas are soft and good for you.  At first, just try a spoon full or 1 bite a day.  Keep your juice and your own food with you were ever you go.

 

I buy about 20 bottles of apple and apple cranberry by Healthy Balance a week.  Look it up on the internet and ask you grocery store to order it if they don't carry it now.  Also try vanilla ice and gram crackers after a while.  Just start with a teaspoon a day. 

TC went on to explain that she's doing very well now, so taking it one step, one day and one bite at a time seems to have worked very well in her recovery.  Thanks for the response and we hope everyone finds this information helpful.

Best wishes and best of health to all.

Jenny

What to eat during a pancreatitis flare?

There are certainly some very tough situations for some people.  Recently heard from M who wrote about not being able to afford ER support for a recent flare of pancreatitis.  M wrote:

“I was first diagnosed with Pancreatitis just before my wedding in August of 2010.  The only relief was my week in the ER on fluids in my IV and a serious of pain and sleeping pills. 
Now I have a horrible flair up and can’t afford to go to the ER for another week as I am still paying on the old bills. 
Does it help to eat the yogurt/jello while you have it or do you have to stop all food intake until the pain subsides?  This just doesn’t feel like it would be healthy at all.
I think my sickness must come from a combination of alcohol, food, and stress.
Any suggestions?”

Firstly M, we think you should do whatever you can to seek medical assistance as soon as humanly possible.  Is it possible for you to see your general practitioner prior to going to the ER?  Limiting food intake is the usual initial treatment but as you allude – it can be difficult and you also want to ensure nutrition (and most importantly ensure that you are keeping well hydrated).  You should attempt to keep water intake.  Yoghurt might not be the best thing due to the fat content.  Definitely low fat variety and even then probably only small amounts.  Try a small amount and see how it goes.  Also, some mashed potatoes, pumpkin/other vegetables might be worth a go.  As you’ll see in the interview with dietitian, sometimes some hospital grade sustagen or similar product could be helpful.

Please try to obtain some medical assistance and let us know how you get on!

All the best

Jenny

Does taking enzymes reduce your pancreas’ ability to produce its

Hi everyone

JS responded to one of our newsletter articles (written by our good friend June Henry) in relation to the effect of enzymes on pancreatic function.  Specifically, JS asks for any evidence of this.  Essentially, June was writing from personal experience and the common practice observed from medical practitioners.  June mentioned the following relating to this issue:

In this case, taking enzymes can be temporary, however it

> is not unusual for a person who has a functional, but permanently

> damaged pancreas to take enzymes for the rest of his life too. But

> my impression is that the need arises from the damage that was done

> prior to the start of enzyme therapy, not as a result of any long

> term suppression caused by the supplementation itself. (Of course,

> as the reader pointed out, supplements can also decrease symptoms

> of maldigestion in this sub-type of pancreatitis).

> So the answer to his question is that yes, supplemental enzymes are

> thought to decrease the amount of enzymes that a pancreas will

> produce and secrete.  However, I do not know if this is a long

> lasting effect; my impression is that it suppresses the production

> and release of natural enzymes only for as long as they sit in the

> gut.  I do not know of any cumulative or long term suppression in

> relation to pancreatic enzymes but it sounds possible based on

> other drug / body interactions (many medications require tapering

> rather that quitting cold turkey).

> In the situation described by the reader, his/her discomfort after

> discontinuing the enzyme supplementation could be caused by many

> things. But I am speculating that the pancreas may not be able to

> make adequate amounts of enzymes any more based more on the disease

> itself rather than as a result of taking supplements.

JS responded with the following:

Below you have written an excellent summary on details of a complex question “do supplemental enzymes decrease the amount of enzymes that a pancreas will produce or secrete?”

 

You said “yes” in your answer below.  Is this based on a study?  What evidence have you read or located to support such a statement?  Please email me back any information you can.

 

I have asked one gastroenterologist about this.  He disagrees but has no data to support his statement either.  I am checking with the chief gastro-surgeon at Moffitt but getting an answer back will take time because those folks stay busy.

 

I have had a Whipple, and these enzyme pills seem to help digestion.  My gastro-doc  has doubled the pills when I got pancreatitis shown by CT. The tradtional pain lasted for 4-5 days.  There has been no more attacks since

the double dossage.   However, if these pills are weakening, what remaining

pancreas I have to produce these enzymes, doubling enzymes doesn’t seem like such a good idea.

 

You can see why my request for a reference to support your statement would be extremely helpful.

 

 

If anyone has any comments please let us know.  I’m sure there will be more discussion on this issue as time goes on.

All the best

Jenny and Bill

Another reader’s story – pancreatitis pain

Hi everyone.  A reader, CB wrote to us recently and asked us to post her story:

“I have been suffering with pain since Thanksgiving 2009.  Actually about a month or two before but not as severe until Thanksgiving.  I am not an alcoholic and rarely drink.  On Thanksgiving I was admitted into our local hospital.  I was put on an IV and pain killers.  I was told that I had gallstones.  Two days later they removed my gallbladder and appendix and fixed a small hernia.  I continued to have pain on my left side right below my ribs which radiated to my back.  I continued to go to my family doctor and advised her of this.  She stated that it would take time to recover from this surgery.  I continued to have pain and she took a blood test which showed my white blood cells were elevated, so assumed that the pain was due to an infection.  I was treated with antibiotics and told that there was a pocket of fluid by the incision from the hernia surgery.  When the pocket of fluid wasn’t reduced after the antibiotic treatment, the doctor tried to drain the pocket by reopening my belly button.  Even after that I continued to have pain.  Finally after almost 2 months after my surgery, I was sent to a gastrinologist.  At first all he did was give me more pain killers and review blood tests.  He advised me that my pancreas and liver levels were high.  Which for my pancreas was told they should be between 0 – 300 and were coming back at the lowest 900.  I was then told to go on a low fat diet.  So I did, but I was still having pain.  I eventually went on a completely fat free diet.  I still continued to have pain.  Another visit and the doctor finally decided to schedule some tests.  The first test was an MR/CP.  The radiologist said that it showed nothing.  Thank God the doctor decided to review the scan himself.  He advised that he seen a small blockage in the tail end of my Pancreas.  He then scheduled me an ER/CP.

After that test he verified that there was a blockage.  I was then referred to a University for an EUS.  At that time a biopsy was taken.  I was informed that the test results came back inconclusive.  I was then referred to a surgeon.  On March 8th 2010 I went in for surgery.  The surgeon was almost positive that I had cancer.  75% of my pancreas, my spleen, 22 lymph nodes, a stomach biopsy and a wedge resection of my bowel was performed.

(It turned out to be a cyst in my pancreas which was not cancerous) I was in the hospital for 6 days.  My recovery started out good.  I had a JP tube in to get the excess fluids out of me.  After approximately 2 weeks the JP tube was removed.  On that day, I went to our local ER in so much pain, I could barely breathe or move.  They sent me back to the University Hospital who performed the procedure.  They ran several tests and came up with no cause.

I was kept in the hospital for 2 days and when released was advised that I needed to go back on a fat free diet.  The day after being released I went back to the gastronologist for his opinion and assistance.  At that time he referred me back to the University ER.  It has been 8 days now with only minor pain.  Today however the pain was back.  The only time I have had complete relief is when I have been on a complete liquid diet.  I know this is not healthy by any means.  I have lost almost 40lbs since the procedure that was done on March 8th.  I am absolutely terrified that I will die as the doctors seem not to be able to do anything except give me pain medication, which is beginning not to work anymore.  I need help and feel I have nowhere to turn.  Every doctor I see continues to refer me back to the Hospital that performed the procedure.  Even my insurance company which assigned me a case manager is concerned.  I have two children and am so worried.  I’m afraid to sleep or eat anymore.  I don’t know what to do or where to turn.”

 

As a postscript to CB’s original note:

“I have an appointment on April 15th with the surgeon and will press her for answers as to the diagnosis of my condition and what avenue I should take to finally be done with this extreme pain.  I will advise you of what I find out.  Hopefully my information and story will help someone out that is experiancing the same issues.  Thank you for your research and your support.  As bad as this may sound, it’s nice to know I’m not alone in my suffering.

 

We’d love to hear from any others who have had similar experiences to CB (and I’m sure CB would love to hear from you as well!). 

 

I’m sure all of us wish CB all the very best.

 

Kind regards

 

Jenny

When is surgery (or even a total pancreatectomy) the answer?

Hi

BP from Sacramento California asks this question in a recent email – something many who have had pancreatitis as long as he has often ask themselves.  If you have any thoughts on this please leave a post. 

 

In the meantime, thanks to BP for sharing your thoughts and concerns.

 

Regards and best of health to all

 

Jenny

 

FROM BP: 

I have had idiopathic chronic pancreatitis for more than twenty years and for twenty years prior I had occasional attacks of sharp pain that had been variously misdiagnosed, but was likely my pancreas.  Three months ago I had an attack which generated not only pain under the sternum, but also on the back right side of my rib cage which has never resolved.  I was unable to return to eating anything without taking enzymes.  It seems the pain on my rib cage is gradually increasing and often after eating even a nearly fat free meal with small portions I have pain on the front of the chest which will usually resolve by taking another enzyme capsule.

 

I had an MRI/MRCP dye contrast which shows a badly atrophied body and tail of the pancreas and two pseudo cysts (fluid)approximately 3/4 inch diameter and about 1 and 1/4 inch long.  They both touch the duct which appears totally normal.  I had the gall bladder removed 2 1/2 years ago because I was passing stones.  My pancreas is apparently not producing much of anything to assist in digestion and is only giving me pain.

 

I am 66 years old, am not diabetic yet, have aggressive coronary artery disease, but at the moment no angina and take no medications for the heart.

I have investigated the possibility of a total pancreatectomy with islet cell transplant in the liver at the University of Cincinnati Pancreas Disease Center.  I am not sure I can get medicare or insurance to approve the procedure, but it looks like a possible way out of my pain without becoming diabetic.

 

What are the negative consequences of such a surgery?  Is it a possible solution to remedy the pain?  Another pancreas sufferer said that she was told a total pancreatectomy would result in phantom pancreas pain.  Is that true?  Thanks for taking my questions.

 

 

Keep asking questions!

As most would know we strongly advocate asking questions of medical professionals if you are ever in doubt or unsure about the diagnosis process, what treatments are being considered for pancreatitis, etc.  We’ve had some recent feedback from LM who writes about recent experiences with her 13 year old daughter who has just had a first attack.  We’ll let LM tell the story:  

 

Hi i am so sorry your dad wasnt diagnosed properly you must be devastated and let down by the health profession.

 

My daughter who is only 13 had her first pancreatitis attack in September followed by being diagnosed with ulcerative colitis and is now on drugs to control colitis which can bring back pancreatitis! She has now had a second pancreatitis attack and the hospital she is under thought it was her just not “managing the pain” but we stuck together as a family and said it wasnt acceptable her pain and after 10 days they are now listening to us and her after implying “difficult family circumstances” is the problem! She had an ultrasound yesterday and is having an MRCP scan next week now and may go on pancreatic enzymes like you mentioned. Fingers crossed the health care havent messed up and let her pancreas get too bad as she is on tramadol for pain as i insisted and anti sickness drugs. Its been a trying time for the last 6 months in and out of hospitals with 2 recurring diseases running alongise so i know how you must of felt.

 

Reading your article has armed me with fresh ammunition to ask more questions for a meeting in 1 hours time with the consultant so thank you for that.

 

Take care

 

LM

Holistic Help

Recently received an email from a sufferer who has found the assistance of a doctor specializing in holistic medicine to be helpful.  Thought readers may find this of interest.

All the best

Jenny and Bill

Thank you for your information. It helps tremendously. I wanted you to know since I’ve been seeing a Holistic Dr I haven’t been in the hospital. I was in and out with severe symptoms requiring 4-5 day stay with 25 mil phenegrin and 50 mil fentaynol every 4 hours til i was better. Enough to knock out an elephant. This went on for several years with a diagnosis of ‘virus’ and gastritis. Finally i saw a different Dr that diagnosed me with chronic pancreatitis. Back to back episodes in the hospital forced me to look for more information. This Dr is treating me with herbs and a drastic food change with eating food combinations. No hospital since July 09 and counting. I would like to recommend this treatment is effective.

Deciding on surgery

Hi everyone

KM recently wrote to us to explain that her husband is being considered for surgery on a small pre cancerous cyst on the tip of his pancreas.  KM is worried about this - her husband is 73 and she’s not sure it (surgery) is the best options.  If the cyst is pre-cancerous, then maybe it is best left alone.  KM has asked if anyone else has had similar experiences and if so, would they mind posting them – it might be very helpful to her in making a final decision whether or not to proceed with surgery.

 

Regards

 

Jenny

 

 

It’s Tough Getting Fair Treatment

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.”

Taming the Sugar Beast (Part IV) – Do you go organic?

Interesting to hear of a recent report in Diabetes Care that found a strong relationship between Type II diabetes and pollutants in the body. Some may now argue that because of the use of contaminants in conventional commercial vegetable and fruit growing operations, that people with diminished pancreatic function should stick to organically grown food.

I’ve got to admit I haven’t been able to find a copy of the actual study but the article I read mentioned six particular pollutants as being of concern, including:

  • hexachlorobiphenyl
  • 2 dioxins: heptadioxin and OCDdioxin
  • 2 pesticides: oxychlordane and trans-nonachlor, and
  • a pesticide metabolite: DDE, a metabolite of DDT

It seems the study found that these chemicals were found in more than 80 percent of the study participants and this group had almost 38 times greater likelihood of developing diabetes as those with the lowest level of exposure.

As we say in the book ‘Cooking Hints and Recipes for Pancreatitis’ one shouldn’t want any chemical additives to the food one eats. Our preference would be to go organic, but we realize that’s not always possible for everyone because of price, availability and assurance that you are in fact getting organic. (One thing you find when you start looking in to this area of food processing is that there is a ‘range’ in determining whether or not something is organic).

Nevertheless, the evidence seems to be mounting that chemicals used in the growing of food can and do have an impact upon the ultimate consumer of that produce. I can’t vouch for this, but the article I read said that the average American takes in nearly a gallon of pesticides per year by eating conventionally grown fruits and vegetables! For the pancreatitis sufferer, it means continued vigilance in controlling what food one consumes, not only because of the potential poisoning but also because of the greater risk of further impairment to the pancreas and the potential for increasing the potential on-set of diabetes.

Until next time.

Bill

info@pancreatitis-advice.com

www.pancreatitis-diet.com