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Intestinal Care Centers: Who, What, When, Where
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Laura E. Matarese, PhD, RD, LDN, FADA, CNSD

 

Intestinal failure refers to the loss of absorptive capacity of the small bowel secondary to severe gastrointestinal (GI) disease or surgically induced short bowel syndrome (SBS). The presenting features include chronic diarrhea, dehydration, electrolyte abnormalities, and malnutrition. Individuals with intestinal failure are often supported with specialized nutrition, including parenteral and enteral nutrition (PN and EN, respectively), and specialized oral diets and formulas.

 

Intestinal Care Centers: Mission and Goals 

Intestinal care centers are specialized centers devoted to the care of individuals diagnosed with intestinal failure or GI dysfunction. At their best, these centers provide a comprehensive range of services, including evaluation, nutrition support, nutritional rehabilitation, medical management, restorative surgery, and intestinal transplantation. Their goal should be to restore nutritional status through the safest, most physiologic techniques compatible with the patient’s lifestyle and wishes.

 

You can think of an intestinal care center as being like a three-legged stool. The seat represents the intestinal care center and the legs that support it are the services the center provides: parenteral and enteral nutrition, intestinal rehabilitation (such as diet modification, oral rehydration solutions, soluble fiber, medications, growth factors, and surgical reconstruction), and intestinal transplantation.

 

Intestinal care centers can provide "one-stop shopping” for those with GI dysfunction or intestinal failure. The services provided should be interrelated, designed to meet the needs of the individual patient/consumer, and provided by a multidisciplinary team that includes surgeons, physicians, pharmacists, nurses, dietitians, and social workers.

 

HomePEN 

Many intestinal care centers specialize in home parenteral and enteral nutrition (homePEN or HPEN). If you are failing PN (that is, your liver is not tolerating the PN, or you have multiple line infections or vanishing vascular access), it may be worth your while to visit one of these special centers. They may be able to recommend changes in your PN prescription or discuss other issues with your local physician to help you.

 

Even if you are doing well you may benefit from visiting one of these centers once a year for an evaluation. It is like taking your car in for a tune-up: sometimes it is best to do a little preventive maintenance in order to avoid a bigger problem down the road. The advantage here is if the clinicians in the intestinal care center have broader experience with PN or GI failure than your local physician, they can use that experience to shed light on your individual case. It is important that you, your physician, and the center can all communicate effectively regarding your care in order to get the most benefit from the recommendations.

 

Intestinal Rehabilitation 

Intestinal rehabilitation includes strategies and therapies designed to make the remnant bowel work better, such as nutrition support, nutritional rehabilitation, medical management, and restorative surgery. Anybody who has had major small bowel resection might benefit from at least learning about rehabilitation strategies. These strategies and therapies are likely to be especially helpful for anyone with short bowel, which in adults is usually defined as 150 cm of small intestine and no in-continuity colon, or 60 to 90 cm of small intestine plus 50 percent or more of colon.

 

Nutrition Support and Nutritional Rehabilitation—These may include diet modification and/or the use of an oral rehydration solution (ORS) or soluble fiber. Candidates must be able to eat by mouth to benefit from dietary strategies.

 

Medical Management—Standard medications such as antidiarrheal agents, antisecretory agents, and bile acid sequestrants may be used. In December 2003, the Food and Drug Administration (FDA) approved the use of growth hormone (Zorbtive®) for patients with SBS receiving specialized nutritional support. Zorbtive® should be used in conjunction with optimal management of SBS, which may include dietary modification, PN, EN, and fluid and micronutrients supplementation. Nutritional supplements may be added according to the discretion of the treating physician. All treatments must be adjusted for individual patient requirements and preferences. 

 

Surgical reconstruction—Sometimes the native gastrointestinal tract can be surgically reconstructed to make it more functional. Surgical reconstruction is individualized and requires a consultation with a surgeon. The surgeon may be able to put an isolated loop of small bowel back into circuit or do some other creative surgery, such as a lengthening procedure, to give you more absorptive surface. Surgical reconstruction procedures include longitudinal intestinal lengthening (Bianchi procedure), serial transverse enteroplasty (STEP), and reverse segments (rare).

 

Intestinal or Multivisceral Transplantation 

A patient should be thoroughly and carefully evaluated before the decision to proceed with intestinal or multivisceral transplantation is made, and such evaluations are done at intestinal care centers. In general, you must have irreversible intestinal failure in order to be considered for this surgery, along with evidence of the onset of complications associated with PN, such as PN-associated liver disease, repeated life-threatening catheter infections, and/or lack of vascular access. The most common cause for the intestinal failure leading to intestinal transplantation is SBS, but transplants are also performed for dysmotility and malabsorption syndromes.

 

Not every hospital performs these types of transplants. Medicare has approved certain centers to perform intestinal transplants. From a transplant center’s perspective, many patients who are referred for intestinal transplantation are often referred very late. Approximately two-thirds of patients transplanted in the United States last year for intestinal failure also required liver transplantation (combined liver-intestine) or liver and intestine along with addition organs (multivisceral transplants). The combined liver-intestine transplants and multivisceral transplants are much bigger operations performed on much sicker patients, and may be associated with poorer outcomes than isolated intestine transplants. Patients with irreversible intestinal failure who are being followed, at least peripherally, by an intestinal care center that also offers transplants have the advantage that transplantation, if it becomes inevitable, can be optimally timed to avoid unnecessary liver replacement.

 

When to Visit a Center 

What happens when you visit one of these centers? When should you go? These centers offer a complete assessment of adults and children with SBS, intestinal failure, and dependence on PN. Since intestinal care centers offer a comprehensive approach to the treatment of intestinal failure, they can do a variety of tests to evaluate the extent and severity of the intestinal failure and gastrointestinal dysfunction. A thorough review of the PN prescription is also performed by an experienced team of medical PN specialists.

 

Making It All Happen 

So, now you have decided that you want to visit an intestinal care center for a review. How do you make it happen? You can approach your physician about getting a referral for an evaluation. Gastrointestinal dysfunction requiring PN therapy is complex, and most physicians are pleased to have suggestions on ways to enhance or improve the management. Alternatively, you can refer yourself. However, most of the major intestinal care centers would prefer to work closely with the primary local care-providers.

 

Most centers will require prior approval from your insurance company before you can be evaluated. The good news is that many of these centers will get that prior approval for you.

 

Pediatrics 

It is important to note that this article is specific to intestinal failure in adults. Some of the information is pertinent to infants and children, but as with all circumstances, children are not just little adults. For example, the length of bowel an infant or child requires in order to survive without PN support is generally much less than that necessary for an adult and they can pote

ntially achieve independence from PN with tube feedings.

 

If your child has intestinal failure, it is important that he or she be cared for by a physician who has experience in this area. Your child may need a referral to a specialized center, but again, this needs to be a center that has pediatric expertise.

 

A Real-Life Example 

A thirty-seven-year-old female with a history of superior mesenteric artery (SMA) thrombosis and previous small bowel resection and jejunostomy was referred to the University of Pittsburgh for evaluation for small bowel transplant. Although the patient had short bowel syndrome, it was determined during the evaluation that her bowel had dilated and she may have enough to undergo a bowel lengthening procedure.

 

The patient was taken to the operating room and a STEP procedure was performed to increase the length of her bowel, and potentially improve the function of the dilated segment. After surgery she was started on an intestinal rehabilitation program that included modified diet and standard medications. She was eventually weaned off PN over the course of several months, thus avoiding transplantation. In this real-life example, the patient was referred to small bowel transplantation but was able to be rehabilitated instead.
See http://www.cms.gov/CertificationandComplianc/20_Transplant.asp for the most up-to-date information.

 

—Other centers provide HPEN and/or intestinal rehabilitation. They are not listed above because they either don’t do intestinal transplants, or don’t have Medicare approval to do intestinal transplants. It is also possible that your own physician and dietitian may be able to do intestinal rehabilitation for you.

 

(The Oley Foundation is aware of many, but not all, centers with PEN, intestinal care, and/or transplant experience. A list of these centers can be found here.)

 

Myth or Fact? 

  • Any physician or medical center can provide PN. Unfortunately, this is a myth. There are many superb clinicians who do PN well. But PN is best done by individuals who have special training, are board certified, and/or have a special interest. Someone who is board certified in nutrition support and has experience with PN will have the following credentials after his or her name: CNSC (certified nutrition support clinician), CNSP (certified nutrition support physician), CNSD (certified nutrition support dietitian), CNSN (certified nutrition support nurse), or BCNSP (board certified nutrition support pharmacist).
  • PN is dangerous and expensive, and will destroy your liver. It is true there are risks associated with PN, but these are minimized when the therapy is managed by knowledgeable individuals and patients are compliant with all safety protocols. The cost of homePN is approximately $100,000 to $150,000 per year. Parenteral-associated liver failure is a potential complication, particularly in patients with SBS, but not everyone with SBS on homePN develops this complication.
  • Everyone can be totally rehabilitated. This too is a myth. Many people do quite well with various intestinal rehabilitation programs. Through these programs, you may be able to reduce or totally eliminate the need for PN. Unfortunately, however, not everyone responds to intestinal rehabilitation. But clinicians generally agree that if there is any way they can make the bowel work better, they will try it. And it may be that an intestinal care center can help optimize your PN. 
  • You need to take special growth factors, such as growth hormone, to be in a bowel rehabilitation program. This is not necessarily true. Many patients are able to reduce their requirements for PN with diet modification, or by using ORS, soluble fibers, and standard medications. Others may need hormonal therapy such as Zorbtive® (growth hormone), or GLP-2, which is still investigational. 
  • If you go to a transplant center you will automatically be transplanted. This is a myth. In fact, most transplant centers try NOT to transplant. Patients are transplanted only when it is indicated. If a center can rehabilitate your remaining bowel either through diet modification, medications, or surgical reconstruction, they will try this first. Sometimes the clinicians will just recommend you stay on PN and offer suggestions on improving the PN prescription. The most appropriate therapy is used for each patient. The goal of an intestinal care center is to improve your medical and nutritional status and enhance your quality of life. 
  • Transplantation is a last resort and should be considered experimental. This is another myth. Intestinal transplantation is no longer considered experimental. It is now a Medicare-approved therapy and has saved and improved the quality of life of many patients. The view currently held by many intestinal care centers is it is better to transplant early rather than wait until a patient is so sick that the outcomes might not be as good (see earlier comments comparing isolated intestinal transplant with combined/multivisceral transplants). Whether this applies to you, however, can only be determined by a thorough evaluation. 

These centers offer a complete assessment of adults and children with short bowel syndrome, intestinal failure, and dependence on parenteral nutrition.

 

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5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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