Patient Resources2018-06-14T03:26:38+00:00

Patient Resources

Resources

The Intestinal Rehabilitation and Transplant Center provides a multidisciplinary approach to treating chronic gastrointestinal disease and other gastrointestinal issues. Because of this, we provide patient resources not to simply educate our patients and their families about their procedure but also to provide support and financial assistance. This gives our patients the ability to be proactive and have a high level of knowledge and sophistication about their condition.

FAQs

Can Someone Discontinue Parenteral Nutrition?

A patient with intestinal failure should be seen in a specialized center where there are experts that can provide the care they need. Most community, as well as most academic medical centers and medical schools are unable to provide this care. Patients need to be taught how to minimize the potential complications of intestinal failure and parenteral nutrition, how to enhance the adaptation of their remaining intestine, diet needs to be specialized, medications must be optimized – not only those that affect the intestine, special surgical techniques may be required, all in a process to gradually wean the parenteral nutrition. Physicians at the University of Illinois Intestinal Rehabilitation & Transplant Center have developed  a number of innovative therapies to help patients with short bowel syndrome. Dr. Buchman played a pivotal role in the development of new medications to decrease diarrhea and enhance the body’s ability to handle intestinal failure, resulting in decreased requirements for parenteral nutrition. Dr. Carroll has utilized a newly developed FDA approved drug teduglutide in patients with SBS, Crohns disease and high output jejunosotmy requiring PN. We are often successful in weaning parenteral nutrition where other more traditional therapies have failed these patients.  Finally Dr. Tzvetanov  and Dr. Benedetti have been able to design and implement bowel surgery which effectively lengthen the total surface area of the bowel to improve absorption without requiring intestinal transplantation. However,  in some cases, these therapies are unsuccessful and  intestinal transplantation is required. The University of Illinois Intestinal Rehabilitation & Transplant Center  takes an individual approach to each as short bowel patients are unique and one therapy is not right for all patients. Our philosophy is through a team approach to develop the safest and most effective therapy for an individual patient rather than advocate a single therapy over another

How Does One Avoid Infections and Other Complications?

Dr. Buchman and his team will teach you how to care for your catheter. Our research has shown that manipulations of the catheter as well as inappropriate uses substantially increase the risk of infections. We will also work with you to hopefully reduce your dependence on parenteral nutrition, as well as to reduce your likelihood of developing liver and kidney disease.

About Us

Dr. Buchman has taught physicians and other healthcare providers around the world on the care of the patient with short bowel syndrome and intestinal failure for two decades. He has authored several books and performed seminal research that have led to improved care for patients with these extremely complex medical and nutritional disorders. He has worked with the FDA and various organizations to help improve care for patients with these complex disorders and served on a Congressionally-appointed committee that addressed the unmet needs of these patients. Dr. Buchman has also served on the Board of Trustees for the Oley Foundation, a nonprofit organization that provides support groups and other resources for patients that require specialized nutritional support.

What You Can Expect

You will need to obtain copies of all your operative reports, recent lab work, hospitalizations, x-rays, and any other important information and send it to Dr. Buchman to review prior to your visit. This is especially important if you are flying to Chicago or otherwise traveling a long distance. We will assist you in finding appropriate overnight hotel accommodations as your evaluation may require more than a single day. Once you are evaluated and a specific treatment plan developed for you, you will need to return at prescribed intervals with other follow-up via telephone. Telemedicine may be an option in the near future to assist with follow-up. We will do our utmost to educate you on the principles of parenteral nutrition, the potential side effects and how to prevent and/or treat them, optimize your medications, put you on a specific dietary and medical treatment plan if required, advise you if we feel specific surgery might be helpful, and assist you in finding the resources to make every-day life much easier. We will prescribe a plan that hopefully will keep laboratory monitoring to a minimum and eliminate or at least reduce the need for future hospitalization. If you are of a working age, we will work to get you back to the workforce or school.

Patients struggling to live with intestinal failure or intestinal issues such as Crohn’s disease, colitis, short bowel syndrome, and others are encouraged to join a support group. A local support group is located in Evanston, IL. For more information on meeting times, please e-mail the contact people below. Family members may also want to use the links listed below to educate themselves about their loved one’s condition.

Prior to Your Visit

Before your visit, be sure to download and fill out all appropriate forms for your procedure. If you have any questions about which forms are needed, please contact us. Read More.

Additional Resources

American Society for Parenteral and Enteral Nutrition
The European Society for Clinical Nutrition and Metabolism
IBD Medications: Indications and Possible Side Effects
Crohn’s and Colitis Foundation of America
Oley Foundation
IBD Determined: information on Crohn’s and Ulcerative Colitis
How to do My HPN
Roundtable Expert Discussion on Short Bowel Syndrome Management
PEN and My HPEN Education

Dietary Therapy

If you have IBD or another gastrointestinal disease, it’s important for you to take control of your diet. There are several dietary options patients can try, including a low-oxalate diet, low FODMAP foods, and soluble fiber foods. Patients may find that one diet or a mix of several may provide the best relief of symptoms. Please discuss particular diet with your Doctor prior to use.

For information on the low-oxalate diet, please read this article cowritten by Dr. Buchman. Under “Article Outline,” click “E. Dietary Restriction” to be taken to the low-oxalate diet guidelines.

For information on how to supplement your diet with soluble fiber, use this chart.

If you have Celiac disease, visit the website for the Celiac Disease Foundation for information on how to maintain a gluten-free diet. If you aren’t sure if a food has gluten or is a “forbidden food” for those with Celiac, use this great tool from the Celiac Society that can tell you if a food is safe to eat or not.

High FODMAP Food: Avoid or Reduce

FODMAP foods contain short-chain carbs, certain types of sugar, and alcohols that and are not easily digested or absorbed by the small intestine, causing extra work for your digestive systems and, in many cases, more symptoms for patients. If you have a gastroenterological condition, you should try to avoid or limit your consumption of high FODMAP foods and try to eat low FODMAP foods. FODMAP foods to avoid include beans, wheat, chocolate, some fruits (especially stone fruits like avocados and apricots), extra sweeteners, and many dairy products. For a more comprehensive list, see below.

High FODMAP Foods: Avoid or Reduce

Intestinal Failure Management

Managing Short Bowel Syndrome patients and other long-term PN patients is complex and can result in complications such as; liver injury, end stage liver disease (ESLD), and recurrent severe infections. Clinicians at the center have the experience to deliver specialized care designed to prevent life threatening complications and manage them if they occur.

  • Medical interventions to improve quality of life and minimize complications related to intestinal failure
  • Multidisciplinary collaboration among physicians and surgeons who are world renowned leaders in liver and intestinal treatments
  • Optimal management of PN and diet
  • Intestinal rehabilitation to reduce or eliminate the need for PN
  • Patient education on proper catheter care and PN use to minimize complications and hospitalizations
  • Cutting-edge research and participation in clinical trials that may lead to advances in therapy
  • Living donor transplantation
  • Isolated intestine, combined liver-intestine, and multivisceral transplantation
  • Ongoing communication with referring physicians
  • Ostomy care
  • Medical and surgical management of complex fistulas