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!
Waylun
A natural athlete 11 years old
Waylun had recurrent pain of his belly since the age of 2½. Pain became more frequent, and stronger over the next years .
Over the last 2 years after TPIAT, he has had no more pain and no need for insulin injections. He has been back to normal live!
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"...At the of age 2 ½ , Waylun would be running around playing one minute then doubled over on the floor the next. As a 2 ½ year old he was unable to explain his pain , he would just say his tummy hurt.
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Finally at age 6 when he had his 7th episode , still with no explanation, St Louis Children’s hospital decided to do genetic testing on Waylun, He was diagnosed with Hereditary Pancreatitis, He has the PRSS1 mutation and CFTR variant.
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Waylun began having increased episodes, increased severity and shorter amount of time between episodes.
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By the grace of GOD we found Dr Gelrud at the University of Chicago . He introduced us to the idea of the TPIAT surgery and eventually the team. By the age of 9, Waylun had had 20 episodes of pancreatitis and multiple hospital stays.
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June 7, 2017 Waylun had his 9 ½ hour surgery that would change his life. Waylun was discharged from the hospital 7 days post op. We were able to leave Chicago to go back home 2 ½ weeks post op.
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We are forever greatful for Dr. Gelrud (whom is no longer the UofChicago), Dr. Slidell, and Dr Witkowski. Along with all the nurses, CAN’s, therapy staff and Child life staff at COMER CHILDREN”S HOSPITAL...."
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Our oldest son was diagnosed in December of 2017 with the PRSS1 mutation and we are already discussing his case with the team and will not hesitate for him to have the procedure if necessary.
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The interesting fact is we do not have a family history of the mutation which is why it took so long for Waylun to get diagnosed . However my husband and I were recently tested for the PRSS1 mutation in which my husband does have the mutation but only had pancreatitis once when he was 6.
Aug 30, 2019
2 year anniversary- no pain, no need for insulin,
A1c 5.4
