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Avatar universal

cronic or acute pancreatitias

my son is 15 and has had 23 hospitalizations for reoccurring pancreatitas with no known reason, can anyone else comment on this. there is surely something causing this but what
21 Responses
469934 tn?1333138882
Hi there:

I'm so sorry to hear that your son is suffering from pancreatitis.  The best thing that you can do for him is educate yourself about this condition.  I'm not a doctor and I know next to nothing about this stuff but I'm learning through my own illness.  I apologize in advance for the length of this post but it is important and I sincerely hope you'll get something out of it.  :)  

To answer your question, according to emedicinehealth, pancreatitis can be caused by, alcohol abuse, gallstones, exposure to certain chemicals, injury (trauma), heredity; surgery and certain medical procedures, infections such as mumps, abnormalities of the pancreas or intestine, or high fat levels in the blood. "In about 15% of cases of acute pancreatitis and 40% of cases of chronic pancreatitis, the cause is never known."  Source: http://www.emedicinehealth.com/pancreatitis/page2_em.htm

Doing your own research can only help.  Check out the "First Principles of Gastroenterology", http://gastroresource.com/GITextbook/en/Default.htm.  I would take special note of the biliary system, Sphincter of Oddi Dysfunction and pancreatitis.

If he's been hospitalized, he must have undergone a number of tests.  There are a few less invasive tests such as the Endoscopic Ultrasound (EUS) and MRCP-S (Secretin) which can image the whole area including pancreas and ductal system.  An ERCP is much more invasive and cannot provide him with a diagnosis unless they use manometry to measure pressure levels.

Is your son taking Metamucil or a similar daily fibre product?  This is a great help for MANY people with digestive and/or bowel problems.   It does not make you go, it makes you regular by adding fibre to the watery stools, making them firm.  

Many people have great success with digestive enzymes and pancreatic enzymes.  This is something you can talk to your Doc about.  I'm told that they won't do any harm so really - unless you have side effects - there's not a downside to trying them.  Your Doc might even have samples.  This is something you can do now and it will help minimize damage to his pancreas.

It helps to keep a journal or a blog and your welcome to read mine if you want but I write a lot (can you tell).  :)  It's a great way to review your situation objectively and identify patterns in your foods, symptoms, medications, bowel habits and pain level.  Hindsight is 20/20 and keeping a log might help you look at things more objectively over the longer term.  Also, when you do go into Emergency, you can say, this has been the pattern...

You are not alone!  Try to stay positive and reach out for support when you need it.  Talk to your Doctor, family, friends, co-workers, church or social service volunteers or anyone you feel safe with.  

I belong to a support group [SODP] that is wonderful.  SODP is short for Sphincter of Oddi, Pancreatitis...  To find it, search the web for Yahoo! groups.  Once you have the page where you can search the Yahoo! groups, search or "sphincter".  There are about five of them.  Only two of them are really worth joining.  Michele's [Sphincterofoddi_pancreatitis] is by far the best as she is a registered nurse and an uncommonly kind, empathetic and supportive woman.  Maddi's [sphincterofoddi-pancreatitis1] is wonderful, too.  Just put in a request to join and within a day or two, they'll let you know that you've been accepted.  Hopefully, if you join, you'll say "Hi" to me there?

When you do find answers, it would be wonderful if you could let us know the root cause(s) and how you got rid of your pain.  It gives people on this site hope to hear success stories.

Take care of yourself.  Good luck and Godspeed.  All the best,

Sam

P.S. I have numerous reference links about pancreas which I'm happy to share with you.  Let me know?
701334 tn?1262857103
sounds like he needs to do the following...
1...needs to get on a high carb,low fat diet.
2...possibly needs enzyme capsules to help aid in digestion,and let his pancreas relax some.
3...find out if his pancreas is now damaged,,,if hes advanced to necrotizing pancreatitis,and if so,,there are steps that need to be taken.
..if it is necrotizing,he should have the dead/calcified area removed/and have healthy cells transplanted to the "getting bad" areas.

theres no reason why he should be in the hospital that much unless hes not following a strict diet and meds regament.
chronic pancreatits is a progressive disease,and unless he is made fully aware of the severaity of his condition,,he should know the prognosis is not good ,,only about 5 years after diagnosis of chronic.

they say you cannot live without a pancreas,and theres no such thing as a transplant,and from my studies,there more less correct.
to have it completely removed means he will be a diabetec right then.
the live expectency after removel is not very long,even with enzymes theropy and insulin.
......and the transpant is nearly 100% failor rate.

im osrry if i seem blunt about this,but i know you want to know the truth,and it is crutial he understands this condition is as serious as a condition as he may ever face.
Avatar universal
As grim as it seems, I agree with crambone.  I have been researching it a lot lately b/c of my own illnesses, bad gallbladder and enlarged pancreas, on my way to pancreatitis, but before it was diagnosed the dr. said pancreatitis and I began my research.

I immediately went on the diet, although since it is my gallbladder it didn't do that much good.

High carbs, low protein and very low fat.  I know how difficult it is for a 15 year old, but it may really help him.  It is also extremely boring and I am going to mention this only because it did not dawn on me when I did this diet.  I lived on pasta, potatoes, bread and rice, but I was using butter on all of it, that has a lot of fat, so keep that in mind.  Also, low protein, if he eats mean make sure it is lean.  Also, there are many foods that we don't think of as protein, eggs, nuts, beans...all that has to be watched. NOTHING FRIED, that is the biggie!  that means chips, fries, chicken fingers, wings, everything teenagers live on.

As for the enzymes, I have not researched them extensively, but I have read in many spots that they are harmless, so maybe ask your dr about them & if that is true why not give them a try.

Your son really needs to recognize how serious this condition is.  My friend had his first attack and was on life support for 16 days and hospitalized for 2 months.  I have heard so many stories like that.  It is not something you can ignore or sneak around and indulge in the no-no's.  

My stepson was a little older than your son when he was diagnosed with severs cirrosis of the liver.  He almost died twice.  He is on the transplant list but is very much improved.  The problem was he was on a strict diet with sodium restriction.  Well, he never ate bad around me but he was 18 and out on his own often...when he kept getting sick I paid more attention and found McDonald bags and other fast food wrappers.  He was sneaking around thinking he was pulling a fast one on me, when he was killing himself.  Your son like mine has to realize that he must do it for him, and I truly would consider councelling.  I wish I had pushed him to see someone,  it is difficult for anyone to live with restrictions and have an illness looming over them for the rest of their life, but to be so young and see all your friends being healthy can make you sprial into a depression.  I really believe the process is much like the grieving process, you have anger, denial, bargaining and finally acceptance.  

I wish you both much luck, I know how difficult it is for you as well, this isn't supposed to happen to our children.  There is so much information out there, dive in and maybe print some of the really good stuff for your son, not to force him to research, but maybe some stories, not medical scripts, so he sees there are other people in the world with this problem and here is how they deal with it.  He is going to have to get active in his illness and a good way to start is with personal stories, they tend to hold their interest...also there are many chat rooms out there where he may meet others going thru this as well and he can talk to them in a different way than with people who do not have this problem.

Once again, I wish you luck in your journey, find a GOOD Dr., check out a few of them. I will keep you in my prayers.

Jessie
Avatar universal
Have your son checked for autoimmune pancreatitis.
Avatar universal
thank you all for your comments... just recently went with an adult gastro doc. very good and hope to find answer. from my son having so many episodes and peditrician doctors telling me he will grow out of it this doctor was amazed and agreed to take on ron's case. He was on enzymes for a very long time. he has also had a spinterotomy which didnt help him. never had any signs of gallstones. had a nucelear medicine test which showed no blockage and all ducts flowed freely. He just had a ct which showed calcification on the pancreas which doesnt sound good meaning the damage is why he keeps having attacks. He is now going to have an edg to check his intestine, stomach and a biopsy of his bowel. Then he will have a test done to check for bile crystals, which this was thought many years ago and never checked by his pediatric gi. thanks you all... very frustrating knowing he has been checked for all the things mentioned in your responces.... thank you again laura.
469934 tn?1333138882
Hi Laura:

I'm thrilled that Ron is in such good hands!  Good for you for taking an active role in his health care.  He's very fortunate to have a diagnosis this early.  

I'm glad he is taking enzymes because anything you can do now to prevent or reduce further damage is extremely important.  Please give some thought to joining the Yahoo! group.  Most of those there have or have had pancreatitis so they may be able to give you practical suggestions.  Also, it's a great thing to have support.  

It really is helpful for him to keep a journal of everything he eats, medications, bowel habits along with how he feels.  It helps identify patterns you wouldn't catch otherwise; as long as he's honest about it.  

This is such a serious and incredibly painful disease and I really wish him the very best!  I've had the esophagogastroduodenoscopy [EDG aka upper endoscopy] before so tell him it's a piece of cake compared to the ERCP.  I've had a sphincterotomy, too, and it didn't help me at all, either.  That was a very tough procedure to endure.  

Take care of yourselves and each other!  Good luck and Godspeed,

Sam
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