Newbie Post 1

Newbie 1: What is Chronic Pancreatitis?
PANCREATITIS MESSAGE BOARD
Posted by Chuck on September 28, 2004 at 11:30:13:

This is the second of a series of messages that I repost occasionally as we get new people. I hope they are of some help.
In normal conversation the Docs I worked with throw around a few terms that have no specific definable borderlines. Chronic Pancreatitis by definition is the result of unrecoverable structural damage to the pancreas. Period. Nothing fancier than that. So you can imagine what Doctors, who are supposed to be scientists, do when presented with such a broad definition as that. What tissue defines structure? Is it exocrine or endocrine structure? Where does it have to be damaged? How much damage?

Early Chronic Pancreatitis is what they use when they don't know how much damage there is but you show several of the symptoms. This is usually only used until they determine what is really wrong. The mistake many patients make is to let them get away with this definition. Make them define the type of damage that has been or is being done.

Damage to the pancreas can be diffuse, focused or annular. Diffuse or sclerosing damage is the hardest for the Docs to deal with because they can't point at something and go "A-HA". Since there is no single point of failure it is usually written off as "idiopathic" or no known cause. The deterioration is unpredictable in speed but the progress is steady and frequently accelerating. The pain from this form is just as steady and unrelenting. It can be mild or severe but since it never stops or even slows down it is simply mind numbing. Depression is extremely common among these patients due to the unrelenting nature of the chronic pain
Focused damage to the pancreas is almost never labeled idiopathic. There will almost always be an obstruction or defect at the root cause. Obstructions can be a stone, tumor, stricture or malfunctioning valve (SOD). Defects that can be at the core of focused damage include Pancreas Divisum, blood flow restrictions and several very rare conditions. Unless the root cause is fixed/removed the deterioration is usually very rapid and excruciatingly painful. The pain tends to come in peaks and valleys. The longer the obstruction remains in place, the more damage is done, the higher the baseline level of pain becomes. Surgery is very often determined to be an answer for patients with focused damage. If the surgery is early enough then it is highly successful and the patient may never show another symptom. The later in the deterioration it is done, the lower the odds of success.

Damage known as Annular Pancreas is very rare. In this type the damage basically forms in a ring. As the ring dies and becomes larger it can cut off or strangle sections of the exocrine pancreas behind it. This can go unnoticed until it is too late. You can end up losing a huge amount or all of the pancreas very rapidly. The pain usually doesn't become severe until it is very advanced. A very complicated surgery is almost always required. Many times a Whipple is the only answer if there is any hope of being pain free and insulin independent.
You'll hear the docs throw around the terms mild, early, severe and end-stage casually. Doctors that throw around the term mild should probably be fired. How can you have irrecoverable damage to a critical organ and have it be "mild"?
The best way I can tell to categorize CP is by defining early as the stage you're in before they figure out how much damage has really been caused and what the root is. Middle stage is while all of the symptoms are manageable by diet/lifestyle changes or medication and you can still function in your normal life completely. This doesn't mean you are not going to have acute attacks or flare-ups. It just means that your day to day life can go on with little modification.
Severe CP begins when medication is unable to control one or more of the symptoms on a regular basis. Your life has a severe impact as you are unable to perform to the degree you had in the past. Severe CP is more a state of symptoms than it is a measurement of quantity of damage.
End-stage is just what it sounds like. The structure of your pancreas has deteriorated to the point of near or complete exocrine dysfunction. Pain is disabling and enzyme supplements are required for even the smallest amount of food. At this point it is possible that the damage has caused irreparable harm to the Islets of Langerhans. Islet cells produce insulin into small pools in the Isles where it is picked up into the blood stream. If the damage has compromised the blood flow or has caused too many of the cells or pool locations to become non-functional then diabetes can occur. Doctors will bring up a complete pancreatectomy for pain control if there is little hope for retention of insulin independence.

There is a stage that may be the medical equivalent of an Urban Legend. Burnout is the stage where all exocrine cells have been destroyed by the disease. Since there is no more to deteriorate, the pain stops. Enzyme supplements are required but they probably have been a requirement on the table of the CP patient for a long time anyway. Although there is some argument internationally the Doctors here believe it is highly likely that diabetes will result. Still, there is that ray of hope to cling to.

"Pain free and insulin independent" is the last dream of the CP patient.
I was told by my Surgeon not to have the Total Pancreatectomy that my GI Doctor had recommended. When a Surgeon tells you not to get cut you have to listen. The fact that he is the Head of the Surgery Department AND the Islet Transplantation Center at one of the top medical schools in the country gives him instant credibility. He also was the Doctor who performed the Whipple Procedure on me.
He said that we are within 5-10 years of some remarkable breakthroughs in Endocrinology and Transplantation that may change our perceptions completely. That was in 1999 and there are several still on the horizon. Geneticists are rapidly closing in on raising pigs with no genetic rejection markers. Your immune system would not recognize it as a foreign body when transplanted. This would give us a virtually unlimited supply of hearts, livers, pancreii and kidneys available for transplantation without the harsh life with anti-rejection drugs.
There are also promising technique modifications in the works for harvesting a larger number of Islets from a pancreas during a Pancreatectomy with Islet Cell Auto Transplant. That might make more of the procedures fully successful.
Living without a pancreas is no picnic and Dr. Brunicardi would have to be convinced that there was no hope before he would take out a non-cancerous pancreas.

Anytime a Doctor starts taking about cutting the first thing to ask is which surgery the doc has in mind. There are only a few choices. There are endoscopic procedures done under the auspices of an ERCP. They can open up the sphincters by cutting them with a wire lead or placing stents or both. All of the other procedures are open surgeries.

There is a Puestow procedure which basically is used for ductal problems. They filet the pancreas and sew it directly into the duodenum so the pancreas secretes directly into the small intestine. There is very little tissue that is discarded in the process.

The other commonly available surgery is the Whipple procedure. This is very major surgery. There are a million options on this one. Questions to be determined are how much will be removed, which part will be taken and how many Whipples has the doc done. There are also differing techniques. My surgeon used a technique he helped refine when he was at UCLA. He has actually done hundreds of them. He saved both my pylorus and the duodenum. He removed my gall bladder, 3/4 of my pancreas and 1/2 of my stomach. There is another variant called a Beger Procedure that reduces recovery time even more as it saves more if not all of the stomach along with the pylorus and duodenum. This is a relatively new procedure in the US but has been used in Germany for quite a while.
The complications of these surgeries can be bleeding, infection or fistula (leakage). The location and number of drains (Jackson-Pratt) to remove leakage has a definite impact on the time it takes to recover. I was out of the hospital in less than 2 weeks and had my single drain removed after 3 weeks. Recovery is completely based upon the skill of the surgeon and what he/she finds once you're opened up.

There is an experimental surgery that is available in very few locations with the most notable being the University of Minnesota Fairview Hospital. The Total Pancreatectomy with Islet Cell Autotransplant removes the pancreas, smushes it up and turns it into slurry, isolates the insulin producing Beta cells and injects them into the portal vein where they take up residence in the liver. The Beta cells will hopefully continue to produce insulin and will be absorbed into the bloodstream just as if they were still in their original place. The harvesting process can sometimes be very inefficient. There is no way the surgeons can tell you ahead of time if they will be able to harvest the 300,000 islet cells that are necessary to have full insulin function. Also if the nerve root has been damaged by the deterioration of the pancreas the pain may not go away with the pancreas. There is a very real possibility that you could go through this $125,000 operation and be a brittle diabetic who still has intractable pain. That is why most insurance companies still do not cover the procedure.

There are a few variations of these surgeries such as a distal Pancreatectomy where they remove the tail of the pancreas and leave the head. This is a relatively easy surgery for the surgeon since there are no blood supply issues. It is simply removing diseased or necrotic tissue. Recovery is usually very quick. I don't want anyone to think I am trivializing this surgery. It is still major surgery of the Alimentary and Endocrine Systems of the body. It is just that complications are few and recovery is fast. The outcome is usually that the patient becomes a type 1 diabetic (insulin dependent).

There is another surgery that is once again pretty major. It is basically opening you up and surgically cutting open the pancreas to widen the end of the ducts and the sphincters so that the pancreas will drain better. The pancreas doesn't like to be fooled with like this and the initial result is severe acute Pancreatitis. Once the attack is controlled the flow should be back to what a non afflicted person considers normal. The biggest complications come when the duct forms scar tissue and/or re-stenoses. That makes the first surgery moot and leaves you in the position of needing a Whipple because of the damage done.

Occasionally, when the pancreas cells rapidly die off in massive numbers they cannot be sloughed out fast enough. Instead of being passed out of the pancreas along with bile and enzymes they collect in what for all extents and purposes is a balloon of tissue called a pseudocyst. Usually these containers of necrotic tissue dissipate on their own. If they do not then surgery is required.
There are two main types of intervention to pseudocysts. The first is minimally invasive. Guided by an Endoscopic Ultrasound (EUS) they guide a fine needle into the pseudocyst and drain it with a syringe. This is called fine needle aspiration. I have never heard of anyone having a pseudocyst of any large size, say 7 cm or larger, successfully drained by fine needle aspiration.

Once a pseudocyst starts to get to a point of danger, either from compromising other organs or fear of rupturing, then more drastic methods must be used. A drain is placed surgically to remove the fluid into either the stomach or small intestine. In extremely rare cases it is drained into the pancreas or the large intestine. Regardless it is not fun either way. Pseudocysts are very painful, upsetting and dangerous.

If it sounds like pancreatic surgery is all desperate measures for desperate people then you probably understand perfectly. From an ERCP to the Whipple or even a complete Pancreatectomy it is all done because we so very desperately want the pain and the nausea and the pain and the diarrhea and oh, yeah, the pain to just stop.

Hopefully, this gives you a little bit to talk to your surgeon about. I can't help in any way to steer you to one or the other. Each has it's own justification. Just have the doc tell you why or why not on each.

Chuck