Here is our original letter hunting for help. We found a diabetes portal and emailed the lady there , Deb, who put us in contact with Dr. Sutherland! Unfortunately , we were sidetracked thinking that sphincterotomies would work and wasted valuable time. Hopefully our ordeal will save others from making the same costly mistake!!

Subj: RE: info on islet transplants Date: 11/28/00 12:16:50 PM Pacific Standard Time From: DButterfield@InsulinFree.org (Butterfield, Deb)To: FLAHAIR2@aol.com ('FLAHAIR2@aol.com')CC: dsuther@tc.umn.edu ('dsuther@tc.umn.edu')

Dear Celeste and Jerry,I am sorry to hear of your illness ... pancreatitis is really a terriblecondition. The person to contact is Dr. David Sutherland ... he is thepioneer of the procedure to remove the pancreas and replace the personsislets to avoid diabetes. You can contact him at dsuther@tc.umn.eduBest,Deb Butterfield

Subj: Fwd: RE: info on islet transplants Date: 11/29/00 11:33:57 AM Pacific Standard Time From: dsuther@maroon.tc.umn.edu (DERS)To: FLAHAIR2@aol.comCC: papas001@maroon.tc.umn.edu (Ann Marie Papas), DButterfield@Insulin-Free.org (Butterfield, Deb)
Dear Mrs ,If the diagnois is correct, your husband appears to be a candidate fortotal pancreatectomy and islet autotransplantation(his own islets, isolatedfrom his own pancreas after removal, and then reinfused into his portalvein at the same surgery, where they will lodge in the liver and produceinsulin as needed and prevent diabetes.). Total pancreatectomy completelyrelieves the pain in about 80% of cases, partially in another 15%, and doesnot in about 5 %. The islet autotransplant prevents diabetes in at leasthalf of the cases, in more if glucose tolerance is normal presurgery. If weget 3000 islets per kg it nearly always works, but we dont know the yieldin advance.If your husband wants to avail himself of this option, he can contact AnnMarie Papas in my office at 612-625-7600, and she will set up a consult orarrange for him to come for an evaluation followed by surgery, if we agreeapprorpriate, after gettting insurance approval, etc. A request forconsult by one of his doctors would help, along with forwarding pertinentmedical infomration.If you want to talk to patients who have had this operation, Ann Marie canprovide some names and numbers. Also, our experience up to 1995 isdescribed in an article in Nov 1995 Annals of Surgery. We have doubled thenumber of patients since then. It is a hard disease to understand and treat, so his experience istypical of the patients we see, but almost for sure he can be helped.David Sutherland, M.D.

from an insurance group:regency:
Scientific BackgroundAutologous Islet Cell Transplant as an Adjunct to PancreatectomyAutologous islet cell transplantation as an adjunct to pancreatectomy or near total pancreatectomy has been investigated since 1977. Since then the experience has grown slowly with incremental improvements in the islet cell isolation process. Researchers at the University of Minnesota have reported the largest experience, summarizing the results in 48 patients undergoing the procedure between 1977 and 1995. (2) Of the 39 evaluable patients, 51% were insulin independent for at least one month, with the probability of sustained insulin independence dropping to 34% after two years. However, of the 18 patients who received an autotransplant with islets prepared with the most recent techniques in islet cell isolation, the long-term success rate was 55%. The most powerful predictor of insulin independence was the number of islet cells infused, which in turn is inversely related to the degree of fibrosis of the pancreas. In a small longitudinal study of 6 patients, Robertson and colleagues reported 5 patients remained free of insulin treatment for up to 13 (6.2 +/-1.7) years after intrahepatic islet autotransplantation. (3) This study also reported a correlation between the number of islets transplanted to insulin response. Unfortunately, there is currently no way to predict preoperatively the number of islet cells isolated, although patients with long-standing pancreatitis and prior surgical procedures are more likely to have a fibrotic pancreas. There have been no reports of significant morbidity or mortality associated with this procedure. (4) Although the published experience with this procedure is limited, autologous islet cell transplantation appears to significantly decrease the incidence of diabetes after total or near total pancreatectomy. In addition, this procedure is not associated with serious complications itself and is performed as an adjunct to the pancreatectomy procedure.

What is the difference between a partial pancreatectomy , and a total? well in the partial (whipple) , The procedure removes the head of the pancreas, the duodenum, the gallbladder, the bottom section of the stomach, and the upper part of the small intestine. The remaining tail of the pancreas and bile duct from the liver are re-sewn to the small intestine and the small intestine is sewn directly to the remaining stomach. Bile from the liver and pancreatic juices from the remaining pancreas will be secreted into the small intestine to digest food, rather than into the duodenum.

Then for total, The duodenum, stomach, and other organs removed in the Whipple are also removed; the difference is that the tail of the pancreas is not sewn back into the small intestine. It is possible for a patient to live without their pancreas. These patients are absolutely required to use insulin to control their blood sugar and pancreatic enzyme supplements to digest food.

now add to those the Islet cell transplant and that gives a variable to the amount of insulin needed IF NEEDED. The whole hope is to aquire enough cells to not need insulin at all!


Pancreatectomy and Auto-Islet Transplant

In 1977, surgeons at the University of Minnesota performed the world's first auto islet transplant after the patient received a total pancreatectomy. Since that time, over 138 pancreatectomy and auto-islet transplants have been performed here, 16 of these procedures have been performed on children under the age of 18. Physicians from the University of Minnesota Medical Center, Fairview (formerly called Fairview University Medical Center), have performed about 2/3 of all pancreatectomy and auto islet transplants in the world.
In patients with small-duct chronic pancreatitis, relief of pain can usually be achieved only by total pancreatectomy (removal of their pancreas). People with chronic debilitating pancreatitis or inflammation of the pancreas may want to consider having a pancreatectomy and auto islet transplant. During this type of surgery, a patient's whole pancreas is removed. Without a pancreas, a person becomes diabetic and needs to take insulin shots. However, to help minimize the need for insulin shots, the patient's own islets are isolated from the pancreas and are put back into the patient through a catheter into the portal vein in the liver. The islets lodge in the liver or spleen and start producing insulin for the patient. With this type of procedure, the patient does not need to take immunosuppressive medications to prevent rejection of the islets by their body because the islets that are infused originally came from their own pancreas.
The probability of islet success is highest in those individuals who have had no previous direct surgery on the body and tail of the pancreas (such as a Puestow or Whipple procedure). For relief from the debilitating pain of chronic pancreatitis, patients have to accept the possibility of diabetes. If diabetes is prevented, it is a bonus.

Which we are hoping to win that bonus round!

this is sphincter of oddi .. part of jerrys problem is this duct doesnt open and let bile or pancreatic enzymes out.

diagram of sphincter of oddi

This is a picture that shows the sphincter of oddi. the main pancreatic duct and bile duct from the liver both converge and their liquids are released via the sphincter. The main pancreatic duct will back up with activated enzymes and they will eat and destroy all along the length of the pancreas. In the torso diagram, where the head of the pancreas is (torsos right side) Jerry has a knot that protrudes out of his abdomen. We were todl that the pancreas is swelling so large that it pushes out from under the stomach and that is what is causing the bulge.

I called Jerrys insurance health coordinator today, she was about to call me! lol. Well he is approved ! yeah!! I then called AnnMarie in Minn. Jerrys surgery date is December 2cd! 6wks away. approximately. We will also be there in time to meet up with Kathleen from Texas. How neat is that?! someone we know with same problems. Well im off here for a bit to get some zzzzzzs long day today. Just thrilled to have a date finally!!

Well , here we meet at the near close of a ten year run of hellacious pain and suffering. We have been told there are no other options at this time. We have used all available treatments and received minimal relief. Our hope realistically is to reduce pain, prevent diabetes and to get some semblance of a life back. In this ongoing struggle we have tried to tell any and all what we have done, tried, or thought of to alleviate or ameliorate the pain.

My name is Celeste, my husband Jerry, suffers from a hereditary form of pancreatic disease called Sphincter of Oddi dysfunction. This is also categorized for simplicities sake, as (CP) Chronic Pancreatitis. He also suffers from severe gastroparesis, which is where his stomach and intestines are paralyzed. They cease to move of their own volition.

Pancreatitis is a disease where the pancreas destroys itself with its own digestive enzymes. A horrible unbearable pain. Imagine you start gnawing on your fingers and don't stop. Just keep chewing on yourself. That is what your pancreas is doing. Auto destruction. Internally. Treatment consists of taking pancreatic enzymes (same ones that are causing you pain) orally, to fake out your pancreas, to make it think the cells in the pancreas have already excreted their dose. Sphincter of Oddi is the release valve that allows your pancreatic enzymes to spill into the intestines. So if it wont open , they back up and eat on your pancreas. The idea is that by hopefully faking out your pancreas with oral enzymes you wont produce as much in that duct and the valve wont need to do the job it cant. (over simplified?) I am trying hard to get a clear picture to express the issue. Pancreatic insufficiency, causes all kinds of problems of its own. It wreaks havoc on your body systems and makes life unbearable. You live on pain medications , (Jerry currently is at the maximum dose allotted to him) and enzymes and a diet that is never predictable. Jerry cannot tolerate proteins. He lives on basic starches. These are things that are readily absorbed into his system with out needing digestion. ( Every time you eat food, you stimulate your pancreas to produce the enzymes that cause you pain. So you must eat enzymes with everything too. ) Jerry takes approximately 60 enzyme tablets per day. His gastroparesis is also an issue , and in order to make food pass thru his stomach and intestines, he takes 1/8 teaspoon of Erythromyacin liquid.. Yep its that antibiotic!! Well for most people that antibiotic causes horrid gut cramps. So, doctors figured out that low doses would start those cramps and help move food thru the system. It works OK. It too is not a perfect cure but it is a bearable treatment.

Now to move on, we have decided to go thru with a total pancreatectomy and Islet transplant. They will remove his entire pancreas, reduce the tissue, and filter out the islet cells. The doctors then will reinject his own islet cells into his liver, where they will be pushed by the flow of blood into the smallest of capillaries and get lodged and start functioning. They will not know they are in a liver and not still part of the pancreatic tissue. AMAZING isn't it? And being your OWN cells, this transplant doesn't need anti rejection drugs!! Now, the downer, we waited now SO many years, that we don't know if Jerry will have enough islet cells to harvest to keep him from being diabetic to some degree. He currently has excellent glucose tests and tolerance!! The doctors must harvest 300, 000 cells. Unfortunately there is no way to know how many there are until it is done. Each pancreatic attack you have, kills off pancreatic tissue. Tissue that contains those valuable islet cells, so you see the dilemma? To jump in at the first knowledge of pancreatic damage and do surgery or to wait out as long as you can. We never meant to be the latter, it just worked out that way. Later I will post the routes we have taken , seeking help and relief. Surfice it to say, 60 doctors is reasonably, 55 more than we ever planned to have to see. Luckily for us, We did meet his Internist who has stood behind us and been a real help! I don't want to make this blog a hate blog , so we wont go into the horrid abusive treatment Jerry received for a couple of years before discovering this internist! We also had a few horrid encounters afterwards as well but again we wont go there into that negativity. This blog is a blog of renewed hope and expectations!!!!! We plan on documenting Jerrys journey thru this ordeal, in hopes of saving others from taking the long road to the same destination. That valuable luggage you carry, in your pancreas, once its gone- its gone forever! No lost and found - no restitution! So I hope you find this helpful and not scary. Everyone's ordeal will be different, just as we all are different to begin with. We only hope this will give you some idea of what it all entails.