PATIENTS
PATIENT
STORIES
Patients with chronic pancreatitis suffer for many years, often since childhood from severe recurrent and eventually chronic abdominal pain without a proper diagnosis. First, they have their gallbladder removed without relief. Then, they have several, sometimes over 10-20 endoscopies over the years with stent placements and exchanges with temporary or no improvement. They look for help in local Emergency Departments where they become known and labeled as "drug seekers". Indeed, opioid medications are the last resort treatment for those patients and it may take many years until they are properly diagnosed and treated. Avoiding fatty products in the diet, with enzymatic supplementation may again temporarily calm the symptoms. with eventual recurrence.
Very often, the disease and inflammation in the pancreas are driven by the known genetic mutation in the pancreatic tissue, in other cases by anatomical variant of pancreatic duct (pancreas divisum) and in some cases by alcohol abuse in combination with smoking.
Once all medical, endoscopic, and surgical interventions fail, excision of the pancreas remains the last therapeutic option to treat the debilitating abdominal pain.
The pancreas is the only source of insulin in the human body so, after it's excision,the patient becomes diabetic and requires insulin injections.
After the surgery, acute and chronic pain are usually gone which allows patients to finally enjoy their normal life activities. Quality of life is improved despite the burden of dealing with blood glucose checks and frequent insulin injections.
In few selected centers like ours, once the pancreas is excised, it is taken to our laboratory for islet isolation. Pancreatic islets (group of cells secreting insulin) are transplanted back into the patients liver. Having those islets, improves the blood glucose control with the insulin that is produced.
The more islets we are able to retrieve from the patient's own chronically inflamed pancreas, the higher chance for a patient to require no or minimal amount of insulin. The longer the surgery is delayed despite severe symptoms, the less islets isolated and glucose control is more challenging with need for higher dose of insulin.
Statistically, patients that undergo an excision of the pancreas and islet autotransplantation:
1/3* have a chance to be insulin free (no need for insulin)*,
1/3 will need low doses of insulin,
1/3 will need high doses of insulin.
* Note: Physical exercise, healthy low sugar diet, and low body weight increase the chance for a life without insulin.
...I have had attacks of very excruciating belly pain as far back as I can remember, as a child, every few years. First physicians thought, I was faking it, or that I was crazy. When it happened more often, one of the physicians accused my single mom of abusing me, as a cause of my painful complaints. Thank God, that social services thought differently and did not give me to a foster family or adoption. When I was a teenager, I was accused of being a drug addict looking for opioids.
Later on, I had my gallbladder removed and gastroenterologist placed sever plastic stents in my pancreas exchanging them every few weeks, but eventually it stopped working and the pain was killing me despite that. Being a young adult, I was miserable, living in constant fear that the pain may come or it won't go away and that terrible roughing up and loose stinky stools. I ended up with a feeding tube in my nose as I could not eat regular food.
Actually, I remember that I could eat tons of ice-cream without pain so soon after, I became chubby. I was depressed, no social life, limited friends, family was close but I was on Prozac anyway. I also found out that one of my uncles had a similar disease as me and he could not handle it anymore and took his life at the age of 35. My grandma was struggling all her life and she died with pancreatic cancer.
Towards the end everyday, I was taking pain killers, pills for my stool and was depressed with no hope for my life...
....and below is the rest of patient stories ....after excision of the pancreas and
after islet autotransplantation!
scroll through the stories below
Tammy
Tammy was suffering from severe chronic abdominal pain for 20 years. Eventually, the pain was constant despite daily opioid pain medication and she required a feeding tube for nutrition. She recovered very well from TPIAT.
She has been without pain medication and no need for insulin injections for over 3 years.
"...For 20 years, I struggled to get through bouts of abdominal pain, which I would describe as like someone trying to put his fist through my gut.
I had been labeled a “drug seeker” and an alcoholic when I showed up at the emergency room in agony. For years, I lived with a “base level of constant pain” that, on a scale of one to 10, it was a five or six.
During that time, it wasn’t clear what was causing my pancreatitis. Some causes could include gallstones, alcohol abuse and certain prescription drugs. None of that pertained to me, but the real cause wouldn’t become apparent for years...
I had never heard of this transplant option from my doctors in Springfield and elsewhere. I learned about it from friends at church.... also faith in God and support from family members helped me endure it all....
Physicians at University of Chicago found out that it was a genetic mutation causing pain and inflammation in my pancreas....
The surgery was a success for me, I can eat anything I want...I have no pain...
I feel doubly blessed. I say God is good all the time. It’s a miracle. Everybody’s a walking miracle. I just got a bonus miracle."