After your child leaves the hospital, he/she will still be recovering. For the first four (4) to six (6) months there will be some restrictions on daily activities. During the recovery period, the transplant team will closely follow your child’s progress. He/She will need to be monitored on a long term basis and you must agree to be available for bloodwork, examinations, abdominal scans, frequent endoscopic tests (see below), and frequent follow up appointments in the transplant clinic. As time after transplant passes, follow up visits tend to be less frequent unless complications develop. In this case, your child’s plan of care will be dependent on their medical condition. After transplant, the transplant team is committed to your child’s care and will follow him/her in the transplant clinic for life.
Outcomes and Complications of Intestinal Transplantation
Statistics from the Intestinal Transplant Registry show that one year after transplantation 83% of intestinal transplant patients are still alive and 70% are still alive at three years. The vast majority of these transplant recipients become free from parenteral nutrition. There are inherent risks in all surgeries, especially surgeries conducted under general anesthesia. Many complications are minor and get better on their own, but in some cases, the complications are serious enough to require another surgery or medical procedure. Immediately following transplant surgery your child will experience pain, but this will be carefully monitored and controlled throughout recovery.
Signs of Rejection
The body's immune system protects against bacteria, viruses and fungi that can cause disease. White blood cells, which are part of the immune system, fight to rid the body of substances they recognize as foreign. The immune system will also identify a newly transplanted organ as being foreign and will, by nature, attack the transplanted organ. This process is called rejection. Rejection is common, especially during the first three months after a transplant and is diagnosed by having an intestine biopsy.
Such episodes are not uncommon and can usually be reversed with medicine, but only if detected early. Some of the signs and symptoms of rejection are identical to those associated with infection. This makes it extremely important to keep your clinic appointments and to notify the transplant coordinator of any symptoms so that the difference between rejection and infection can be determined. Your child may need to be admitted to the hospital for further diagnostic testing and treatment.
Rejection and infection are two serious problems that require completely different treatments. As with any health problem, the sooner treatment is initiated, the lower the chances are of serious illness developing.
Post operative rejection monitoring
The earlier a rejection episode is treated, the easier it is to treat and reverse. Therefore, it is important for you and your child to become familiar with possible signs and symptoms of rejection. Call your child’s doctor or transplant coordinator if you notice the following symptoms:
- Change in ostomy output (increased or decreased)
- Intestinal bleeding
- Abdominal Pain
Whenever rejection is suspected based on clinical symptoms, an endoscopy is performed. This procedure is the only way to detect rejection and allows the macroscopic and microscopic appearance of the transplanted intestine to be analyzed under a microscope. The ileostomy (or colostomy) provides an easy opening to enter the intestine for the endoscopy.
Per protocol, endoscopies are performed at certain intervals, although this may change according to your child’s medical condition. In general, the first endoscopy and biopsy is performed via the ileostomy between postoperative days 2 and 5. Ileoscopy and biopsy are repeated two to three times per week while in the hospital post transplant, weekly for the following three months, then monthly until stoma closure. Once the stoma is closed, endoscopies will be performed through the mouth or the rectum depending on which area of the intestine needs to be evaluated. In the case of rejection, endoscopies will be performed at least twice a week until resolution.
The endoscopy is a 10-15 minute procedure and is usually very well tolerated by the transplant recipient. A special scope called a zoom endoscope allows a close magnified evaluation of the transplanted bowel. Every endoscopy is accompanied by multiple intestinal biopsies (small pieces of mucosa) that are read by an expert transplant pathologist during the same day the procedure is performed. Because the transplanted intestine (also called a “graft”) is denervated, the procedure is painless. Some temporary gas distention may also be experienced.
Medication for Life
Your child will be required to take medications for the rest of her/his life to prevent the body from rejecting the transplanted organs. The types and doses of medications will be determined and adjusted by the physicians based on your child’s condition and health. Following transplantation you and your child will receive further instructions and teaching regarding the medications specifically ordered. Listed below are examples of some, but not all, of these medications. It is important to note that all anti-rejection medications can increase the risk for infections and malignancies, so self-monitoring and health maintenance will be very important.
- Tacrolimus (Prograf): Usually used as a primary immunosuppressive agent.
- Cyclosporine (Neoral, Sandimmune): May also be used as a primary immunosuppressive agent
- Sirolimus (Rapamune): Can be used as a primary or secondary agent
- Mycophenolate mofetil (cellcept): May be used in addition to prograf as a secondary immunosuppressive agent
- Steroids: Can be used to prevent and treat episodes of rejection. If used for rejection treatment, usually it is given by an IV.
The goal of various medications during and after transplantation is to help your child’s body tolerate the transplanted organs. Other medications may be required lifelong to treat or prevent various infections. The potential need for these medications may be determined by blood work obtained during the evaluation process.
Quality of Life (QOL) after Intestinal Transplantation
Based on quality-of-life studies performed in different transplant programs, most intestinal transplant recipients have a good or normal quality of life after transplantation. In a growing number of patients the quality of life is reported to be better than when they were on PN. As survival and quality of life continue to improve with experience, as it has dramatically happened in the past 5 years, intestinal transplantation may soon be offered to a wider population of PN dependent patients as standard of care therapy.
Major advancements have been made in recent years in immunosuppression, surgical techniques and post-operative care. Now, favorable outcomes for intestine transplants are no longer the exception; they are the expectation.
This means that most patients are able to resume normal lives after their transplant surgery. They no longer will need to rely on parenteral nutrition, but instead can enjoy eating again. Of course, patients will be followed for a lifetime by our medical team, and they will need to stay on a careful regimen of medications. Patients and their families learn about the signs and symptoms of rejection and infection, and they will become an active participant in their own care.
The time until return to normal daily activity is quite variable. Generally, patients need to wait at least six to 12 months before being allowed to return to school or work. If applicable, your child’s transplant team will help to decide the best timing.
Outpatient Follow-Up Care
Signs and symptoms of problems such as rejection can be subtle and difficult to detect early. Delays in recognition of problems or diagnosis of problems can be life-threatening.
First Postoperative Months as Outpatient
All intestinal transplant recipients are required to remain in the Cleveland area for at least 3 months after discharge. Laboratory testing will be performed twice a week unless otherwise indicated and appointments will be scheduled at least once a week in the clinic. The transplant social worker or transplant coordinator are resources to discuss options for assistance regarding the cost of local housing.
First Postoperative Year
Clinic appointments usually occur every 1-4 weeks with laboratory testing on a weekly basis. All test results should be forwarded to The Intestinal Rehabilitation and Transplant Program at The Cleveland Clinic. Many times it is possible for the recipients to be seen by their referring gastroenterologist on an alternating week basis with Cleveland Clinic visits (this is to be determined on an individual basis).
Beyond First Postoperative Year
Depending on the condition of the patient, visits are a minimum of four times a year. Laboratory testing is necessary on a weekly to monthly basis.