Pancreas Care Center

A total pancreatectomy with islet autotransplantation (TPIAT) is an eight- to 10-hour surgery that takes place in two stages:

• Stage 1 is a total pancreatectomy, which involves surgically removing the pancreas and reconstructing the gastrointestinal tract. Removing the pancreas often can relieve the severe abdominal pain that accompanies chronic or acute recurrent pancreatitis. But it also causes a problem: without a pancreas, the patient will develop insulin-dependent diabetes, a serious lifelong disease.
• This is where stage 2, called islet autotransplantation, comes in. Islet cells live in the pancreas. They produce insulin and other hormones that regulate blood sugar levels (and avoid difficult to control diabetes). After the surgeon removes the pancreas, the lab technicians at nearby University of Cincinnati Medical Center isolate the islets from the diseased organ. The islet isolation process takes about four hours, after which the islets are returned to the operating room, and the surgeon injects the islets into the patient’s liver.

The goal is for the transplanted islets to begin producing insulin in the liver. This can lessen or even eliminate the patient’s risk of developing diabetes. However, it can take several months or longer to know whether the islets will function properly. In the meantime, the child is treated with insulin therapy. This involves frequent doses of “exogenous” insulin—insulin that is manufactured by a pharmaceutical company, rather than produced by islets. Exogenous insulin is delivered by injections or by a pump.

Patients with severe, debilitating pain caused by chronic or acute recurrent pancreatitis may benefit from TPIAT. Your child’s doctor may recommend it if other treatments have failed.

Patients who undergo TPIAT typically have been experiencing this type of abdominal pain for more than six months. They are unable to go to school or be active, and have been hospitalized one or more times for the pain.

If your child’s physician believes that your child may benefit from a TPIAT, he or she will talk to you about what the procedure involves and what you can expect. If you decide to move forward with possible surgery, your child will undergo an intensive preoperative evaluation that may include:

• Clinical evaluation by PCC providers in gastroenterology, surgery, endocrinology and infectious disease.
• Imaging tests, such as magnetic resonance imaging.
• Endoscopic procedures, such as endoscopic retrograde cholangiopancreatography (ERCP).
• Tests to evaluate how well the pancreas and islets are functioning.
• Genetics evaluation to identify any underlying hereditary causes for pancreatitis. This could influence the type of surgery recommended for your child.
• A pain management evaluation to assess your child’s current pain control and make a plan for after surgery.
• Nutrition evaluation, including education on pancreatic enzyme replacement therapy.

Our surgery nurse practitioners provide care coordination, help families know what to expect, and answer questions. A social worker is available to assist with financial concerns, and diabetes educators provide materials to help families prepare for insulin therapy. At every step, we encourage families to ask questions and share any concerns.

TPIAT can last eight to 10 hours. Our surgery nurse practitioners play an important role during this long day. They will provide your family with updates from the operating room and spend time with you and your child in the pediatric intensive care unit after surgery.

Following TPIAT, your child will be admitted at Cincinnati Children’s for about one month, including about one week in the pediatric intensive care unit. TPIAT is a major surgery, and our medical team will be focused on managing your child’s complex medical needs. This includes:

• Starting insulin therapy to maintain blood glucose levels.  Tight control of blood glucose levels is critical for survival of the transplanted islets. Your child will require insulin administration for at least three to six months after surgery. 
• Monitoring all of your child’s medications and adjusting doses as needed.
• Managing your child’s digestive needs. Your child will have a feeding tube for about two to three months. The tube will be removed when their digestive system is ready to function normally.
• Providing physical therapy to help your child maintain mobility and strength.

Education is a big part of your child’s hospital stay. Our advanced practice nurses teach you and your child how to care for the feeding tube and manage other aspects of at-home care, and diabetes educators will provide training about blood glucose control and insulin therapy. The surgery nurse practitioners will visit your child frequently and are always available to answer questions.

The weeks and months following surgery are very important for your child’s long-term success. We ask that your child remain in Greater Cincinnati for about four to six weeks after leaving the hospital. Our guest services team is available to assist you in planning for the temporary relocation needed for the procedure.

During those first four to six weeks, you and your child will return to the Pancreas Care Center for frequent follow-up appointments with our multidisciplinary care team. Our team will:

• Monitor your child’s blood glucose control and islet function.
• Adjust medications as necessary.
• Make sure your child is getting the nutrition he or she needs before and after the feeding tube is removed.
• Wean your child from pain medications.

 After this initial follow-up period, your child will return to the clinic less frequently for check ups.

Most patients report significant pain relief and an improvement in their quality of life following TPIAT. In the months following surgery, they typically can return to school, social activities and even sports. Many patients are able to dramatically reduce or eliminate their need for narcotic pain relief.

Knowing whether your child will remain on insulin therapy takes longer—up to a few months to a year or more.

• During follow up, the team will wean your child from insulin administration and will watch carefully to see if the islets begin to function as hoped. If the islets do not function adequately, patients may require consistent insulin doses.
• About 40 percent of children achieve insulin independence and are able to wean off all exogenous insulin by one year after TPIAT.
• Another 30 percent achieve partial graft function and remain only on basal insulin doses.
• The remaining 30 percent of patients are fully insulin-dependent, requiring both basal and bolus doses.

From now on, your child will have to take medication to replace certain digestive enzymes that are normally produced in the pancreas (pancreatic enzyme replacement therapy). However, your child will not need to take anti-rejection drugs after TPIAT, since the islets are transplanted from his or her own body and not from a donor.