Straight Talk About Hospitalization; A Guide for IBD Patients

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Author: Marci Reiss, MSW
Editors: Marla C. Dubinsky, MD; David T. Rubin, MD

This handbook is made possible and supported by and unrestricted educational grant from Procter & Gamble Pharmaceuticals.

© 2005 Cedars-Sinai Medical Center and the University of Chicago

Being in the hospital is stressful
Being hospitalized can be an anxiety-producing experience. There are many psychological dynamics that patients, their families and the medical team experience. When patients and staff have a better understanding of each other's feelings and how hospitals work in general, they can work together more effectively towards a healthier outcome and a more successful hospital experience.

Communicating effectively with your medical team
Remember, the painful emotions you are experiencing may impact the people around you. Doctors and nurses care deeply about your emotional as well as your physical well-being. Therefore, when you feel depressed, scared or helpless, you may be misinterpreted by your medical team as being demanding and impatient. Your medical team is working hard to get you well. They need your patience, courtesy and understanding. Communicating your feelings with them will help everyone stay focused on the goal of getting you healthy and out of the hospital as soon as possible. Take notes! Write down your thoughts, feelings and questions, so that when your team comes to your room on rounds, you can discuss your concerns efficiently with them.

Learn about your disease
Learning about your illness is one of the most important things you can do to help yourself on the road to recovery. Try to become as educated as possible about your disease. Ask your doctor about treatment options and what to expect during your hospitalization, including risks and benefits of proposed treatment plans. Know which tests you are having and what they are for. If you are computer savvy, ask if there are any websites that can provide you with further information. Ask what the goals are for your hospitalization, and what is Plan B if Plan A doesn't work. Be a partner with your medical team to get you healthy.

Understand the nurse/patient relationship
Nurses play a vital role in the well-being of patients. Their role includes physical care and some educational care regarding IBD. It is an essential relationship because nurses become your assistants in some very personal and intimate ways. It can be uncomfortable for both the patient and the nurse when dealing with stool and that awkwardness should be recognized. A little humor may help to ease the tension. It is important to remember that not all nurses are familiar with the intricacies of IBD, and what it means for their patients. Clear, open communication with your nurse is the best way to achieve results. Although your nurse will undoubtedly want to assist with your emotional needs, their time is often limited. They may feel frustrated if they cannot assist you in the manner they would like. If they don't have answers to your questions, write them down and save them for your doctor during rounds.

Understand the emotions associated with hospitalization
Illness is emotionally difficult for everyone. During hospitalization, IBD patients often describe feeling anxious, depressed, angry, scared, lonely, and helpless. If you're feeling any of these emotions, make use of your support system such as family and friends. If you don't have a support system readily available, ask to speak with the social worker. They are specifically trained to help patients cope with the negative feelings often associated with illness and hospitalization.

Recognize the pressure your medical team is under
Doctors and nurses want you to understand that they are trying very hard to make you well. They want you to trust them even when you are feeling scared, and to understand that they want to help you. Although your medical team may not have a lot of time to spend in your room each day, they do care a great deal about you and your hospitalization. Make the most of your time with the team by keeping a log of your symptoms and a list of questions.

Familiarize yourself with your hospital's schedule
Early in the morning, there are "Rounds." This is when the medical team comes by to check on the patients. It is helpful to have a list of questions written down and ready for your doctor to make the best use of everyone's time.

Things often take more time than expected
Procedures may start later than they were scheduled. This can be frustrating, especially since patients and their families are often anxiously awaiting these procedures and their outcomes. It is important to remember, however, that procedures sometimes get off schedule because each patient is given the time and attention they need. When it is your turn, you will be given all the time you need as well.

Bring the comforts of home with you
If you are going to be hospitalized for several days, you may wish to bring some special items from home, such as your favorite pillow or toiletries and you may even consider bringing your own toilet paper. Leave valuables at home. Find out if the hospital has in-room Internet access, and whether your room will have a VCR or DVD player.

Know your medical team
During your hospitalization, many people will come through your room. This can be stressful since people who are not feeling well often want privacy. However, all of these people play an important role in getting you well. Be sure to ask everyone who comes in your room to introduce themselves and discuss their role in your care, and take notes! It's difficult to remember who all these individuals are, and what they do. On the other side of this page is a breakdown of who these people may be, what they do for you and space to record their names.

Gastroenterologist
Your gastroenterologist is the leader of your medical team and is in charge of making medical decisions regarding your care. In academic medical facilities, this individual is also called "the attending physician."

NAME(s):

Gastroenterologist Fellow
The "Fellow" is a doctor who has completed medical school and a 3-year internal medicine/pediatric residency and is now studying to be a specialist.

NAME(s):

Resident/Intern
These doctors have completed medical school and are now training in internal medicine/pediatrics. They address the patient's immediate needs and often act as the liaison between the gastroenterologist and the patient.

NAME(s):

Medical Student
Medical students in their clinical years of studying will rotate through the medicine/pediatric ward and work closely with the residents/interns.

NAME(s):

Nurse
Nurses are the ones responsible for the patient's day-to-day care. They are generally the ones who respond first to a patient's physical needs, questions and feelings. The nurse has the most contact with the patients at the hospital. They are often best able to communicate your needs to the rest of the medical team. There will likely be many nurses working with you through all hours of the day and night.

NAME:		HOURS:		DATE:
NAME:		HOURS:		DATE:
NAME:		HOURS:		DATE:

Certified Nursing Assistants/Clinical Partner
These individuals work closely with your nurse, take your vital signs and assist patients with things like eating, walking and getting dressed.

NAME(s):

Dietician
Your dietician will work with you and your doctor to ensure that you will be getting the best nutrition possible during your hospitalization.

NAME(s):

Social Worker
The social worker is the person to talk to about your illness and any difficulties you are having emotionally. They are trained to help you and can often give you references to other resources in your community that can assist in your particular situation. Social workers are also knowledgeable about public benefits and insurance. They may be able to help you resolve insurance problems and help you access public benefits and services of which you are unaware.

NAME(s):

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