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Newsletters: Nutrition Week: Once in a Lifetime Experience
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Nutrition Week: Once in a Lifetime Experience

The Oley Foundation had a strong showing at Nutrition Week held February 8 to 12, 2004, at Caesars Palace in Las Vegas, Nevada. In addition to a well attended booth, Oley hosted a panel discussion for consumers and caregivers to share with clinicians what their life is really like with home tube and IV feedings. Many thanks to our volunteers on the panel and in the exhibit hall: Mariah Abercrombie, Felice Austin, Deon Balli, Rick & Dianne Davis, Linda & Megan Gravenstein, Charlene and John Henry Key, Robbyn Kindle, Judy Peterson and Erik Schten.

Held at the front end of Nutrition Week, one of the more fascinating and impressive educational experiences was the Intestinal Failure workshop. It was packed with outstanding presenters and a lively participating audience from 15 countries and 35 states. The workshop covered a wealth of information and will help shape future research and clinical management of intestinal failure patients. Below we’ve covered highlights of the meeting that should be of interest to consumers. To read the full proceedings of the workshop, look for a supplement in an upcoming issue of Gastroenterology. Kudos to the meeting’s organizers Alan Langnas, MD, and Kelly Tappenden, PhD, RD, and many thanks to all who participated.

Big Picture Is Hopeful

The prognosis for patients with intestinal failure is hopeful. Adults with 100 cm of remaining bowel and a working colon or ileocecal valve should be off TPN within 2 years. Similarly, pediatric patients with 40 cm or more small bowel with an ileocecal valve and working colon are likely to come off TPN; although according to Olivier Goulet, MD, the dependency is often longer (about 48 months) because of children’s high growth demands.

As Lyn Howard, MD, described, the quality of life for those left dependent on homePEN is challenging, but remains good. Depending on their diagnosis 60 to 70 percent of patients reach nearly full rehabilitation and many are able to resume normal, age-appropriate activities such as attending school, raising families, working and/or participating in their community. Research by Carol Smith, PhD, has shown that involvement with a national support organization improves patients’ quality of life; decreasing episodes of sepsis and depression. More work is needed to help patients and caregivers cope with the emotional and financial stress of long term homePEN therapy.

Even the patients who develop liver failure have a better prognosis, as the outcome of patients with small bowel transplants continues to improve. Three year survival for patients with isolated small bowel transplant is now at 90%. Some of the steps that have improved outcomes include better antirejection medications (FK506, ALP, Rapamycin), more accurate diagnosis of infected versus rejected transplanted organs, and better techniques for sizing donor organs to fit recipients (most of whom are small children).

We’ve learned it’s important to refer patients early to a transplant center, before the liver disease has progressed. Far too many patients are dying while waiting for an organ to be donated. Also, as one would expect, survival rates and other measures of outcome are better for patients who were at home and in better health before the transplant.


Progress Made

After leading the audience through an impressively thorough review of the literature, David Alpers, MD, showed that glutamine does not offer any measurable benefit to HPN patients and therefore should not be considered part of their standard protocol. Similarly, Jim Scolapio, MD, argued that published research does not substantiate the use of growth hormone or a combination of growth hormone, glutamine and diet to reduce long term dependency on HPN in short bowel patients.

Other studies are showing more promising progress towards the goal of reducing HPN dependency. The first is research on rats by Brad Warner, MD, which is helping to pinpoint factors that affect gut adaptation, including the timing and types of growth factors introduced after a bowel resection.

The second set of clinical trials, presented by Palle Jepperson, MD, PhD, showed the success of GLP-2 and another GLP-2 analogue in reducing patients’ dependency on HPN. As published in an article in a previous issue of the LifelineLetter, GLP-2 helps improves patients’ ability to absorb fluid and a modest amount of calories, making it possible for patients who are borderline dependent on HPN and/or hydration to get off therapy, and others to reduce the amount of HPN/hydration needed. An opportunity to participate in GLP-2 clinical trials will soon be available for HPN patients in the US, watch for more details in the “Ongoing Research” section of the newsletter later this year.

Drawing upon years of patient and clinician experience, some patients have been able to reduce their dependency on HPN simply by absorbing more calories taken orally. Some nutrition support programs have also had success in reducing patients’ diarrhea and lowering their need for IV hydration using oral rehydration solutions (ORS) and/or a combination of other fluids and salt tablets that mimic an ORS. This topic will be covered more fully in a later issue of the LifelineLetter in an article by the presenter, Khursheed Jeejeebhoy, MD.


Other Gains

Venous access is another area that has seen significant improvement. Over time, access has become less of an issue as interventional radiology techniques to reuse thrombosed, or otherwise compromised veins, are tried and improved. Radiologists and surgeons are also gaining more experience with new areas of access, such as using translumbar veins, when the more common routes of access are no longer available. Newer, more effective products to restore catheter patency are available too, including t-PA for thrombolytic occlusions, and the endoluminal brush, for thrombolytic and other types of occlusions.

Finally, there was a wonderful presentation on advances in the treatment of patients with motility disorders. We are hoping to have an in-depth article on this topic later this year by the presenter, Carol Di Lorenzo, MD.


Challenges Ahead

Looking to the future, some of the challenges include the familiar complications of HPN: sepsis, and liver and bone disease. Though rarely fatal, sepsis is a common, serious complication that erodes patient quality of life, is expensive to the health care system and can lead to lack of venous access. Liver disease remains the most difficult to overcome, especially in infant HPN patients. Bone disease remains a challenge for long term patients, with multiple factors in addition to HPN contributing to the issue, such as malnutrition before HPN, malabsorption syndromes and the use of steroids and other therapies to control the underlying disease.

Another major concern is poor reimbursement for physicians specializing in nutrition support. Few physicians are going into the field, making it more difficult for HPN patients to have access to experienced, qualified clinicians.

Hopes for the Future

Beyond the obvious, but elusive goal of “curing” intestinal failure, there were some practical themes that recurred throughout the two days of discussion. Everyone agreed it would be extremely helpful to reinstate a registry of HPEN patients to track outcomes and fuel future research. Ideally it would be an expanded version of the North American HomePEN Patient Registry the Oley Foundation used to run before a funding crisis in 1994. Such a registry would help track HPEN outcomes, fuel research, and make it easier to make a more meaningful comparison between HPEN and small bowel transplantation.

The other much discussed goal is to create a new model of care for intestinal failure patients in the United States. The idea would be to have integrated intestinal failure centers where specialists in nutrition support and small bowel transplantations work together, as they do in countries like France. Ideally, every long term HPEN patient would receive training and care from such a clinic periodically, if not all the time. Research shows that patients under the care of more experienced clinicians have better outcomes, and by working together, it would be easier to identify and successfully treat patients who need small bowel transplants. Geography and insurance issues are obvious obstacles, but are not insurmountable when you consider the trends of growing managed care systems and fewer intestinal failure specialists.

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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