Confident Conversations (Patient Guide)

CONFIDENT CONVERSATIONS

BUILDING HEALTHIER

COMMUNITIES TOGETHER

Helping patients navigate appointments is important and we hope that this guide empowers you to advocate for yourself.

Color of Gastrointestinal Illnesses is a 501(c)(3) Registered Organization

CONVERSATIONS WITH YOUR HEALTH CARE PROVIDER

Speaking up for ourselves can be one of the toughest things to do. It can be scary, intimidating, and downright uncomfortable. But, you can do this! You are powerful and no one can convey your life the way that you can -- you are

1.Prepare for your appointments.

a. Determine whether or not you will have someone attending your appointment with you. You will want to discuss your concerns with them so that they can be prepared for the appointment with you.

b. Create a list of questions that you would like answered by your health care professional. Example questions:

i. Have you treated other black/minority patients?

ii. Why do you want to run that test? How long do the results take?

iii. What will the results tell you about my health?

iv. Will there be additional tests?

v. What patient resources are available to me?

c. Research your condition/symptoms - make a list of symptoms.

i. On a scale of 1-10 (1 being the least amount) - how much pain are you in?

ii. How does each symptom impact the quality of your life? Make a list.

Symptoms

Impact

d. Make a list of medications that you are currently taking.

i. Make a list of medications that you have recently taken (the last 60 days).

e. Bring any x-rays, test results, lab results that pertain to the appointment with you (if this is a new physician).

a. Listen and take notes on what the doctor says, and write down the questions that you think of so that you don’t forget them.

b. Go over your questions and ask them (write your notes on the responses, and process what is said).

c. Express your needs, don’t assume that the doctor will know them.

d. As much as your health is an emotional situation, do your best to remove emotions from your self-advocacy so that you can think clearly and rationally.

e. Ask questions about the medication that you are being prescribed:

i. Why am I being prescribed this medication?

ii. I have an allergy to ________, does this medication have that?

iii. Are there other options or is this the only option right now?

iv. How long has it been on the market?

v. Are there any studies that I can read on this particular medication?

vi. What if I miss a dose? Will there be adverse efects?

vii. If this fails, what are the next steps?

viii. Are there any natural remedies that may help instead of immediately going to a prescription medication?

If you are not comfortable with the diagnosis, you have the right to seek a second opinion. Express this concern to your healthcare provider and look into a secondary opinion.

Prepare to receive news that you may not be comfortable with.

You can disagree, this is a process. Respect is always the rule.

When speaking to ofce personnel, be sure that you are speaking to the person who is qualified to answer your questions with an accurate response. Meaning, if they tell you NO, do they have the authority to provide a YES also. If they do not, it is OK to ask for the director or the manager.

Know your rights and responsibilities as a Patient.

The patient has the right to receive considerate and respectful care.

The patient has the right to know the name of the physician responsible for coordinating his or her care.

The patient has the right to obtain information from his or her physician in terms that can be reasonably understood.

Information may include but is not limited to his or her diagnosis, treatment, prognosis and medically significant alternatives for care or treatment that may be available. When it is not medically advisable to share specific information with the patient, the information should be made available to an appropriate person on his or her behalf. When medical alternatives are to be incorporated into the plan of care, the patient has the right to know the name of the person(s) responsible for the procedures and treatments.

The patient has the right to obtain the necessary information from his or her physician to give informed consent before the start of any procedure and treatment.

Necessary information includes but is not limited to the specific procedure and treatment, the probable duration of incapacitation, the medically significant risks involved and provisions for emergency care.

The patient has the right to refuse treatment to the extent permitted by law and to be informed of the medical consequences of his or her action.

The patient has the right to obtain information about any professional relationships that exist among individuals who are involved in his or her procedure or treatment.

The patient has the right to every consideration for privacy throughout his or her medical care experience, including but not limited to the following:

a. Confidentiality and discreet conduct during case discussions

b. Consultations

c. Examinations

d. Treatments

Those not directly involved in his or her care must have the permission of the patient to be present. All communications and records pertaining to the patient’s care will be treated as confidential.

The patient has the right to access and examine an explanation of his or her bill regardless of the source of payment.

The patient and designated support person(s) have the right to know what facility rules and regulations apply to their conduct as a patient and guest during all phases of treatment.

It is the patient’s responsibility to participate fully in decisions involving his or her own healthcare and to accept the consequences of these decisions if complications occur.

KNOW YOURSELF

Self-advocacy is the key to you managing your own health care and healthcare options. You know yourself the best, so you are the best person for this job! The MOST important step is learning everything about yourself that you can possibly learn:

Have you been diagnosed with a condition?

If so, what is that condition/illness?

If not, are you feeling symptoms?

If so, what are they? (if you have been diagnosed, list your symptoms as well)

What foods do you like?

What are your pet peeves?

What situations, foods, and environments exacerbate your symptoms?

What are your strengths?

What activities make you feel good?

Do you have hobbies?

What challenges you?

How does it challenge you?

GUT TALK TERMINOLOGY

AAbdominal Pain - Discomfort or pain in the area between chest and the pelvis.

Abscesses - An Abscess is a collection of pus. Abscesses form when inflammation extends deep into the wall of the intestine and an infection develops.

Anal Fissure - A cut or tear in the anal canal.

Anus - The opening of the rectum.

Aminosalicylates - Compounds that contain 5-aminosalicylic acid (5-ASA) and reduce inflammation in the lining of the intestine.

BBowels - The part of the alimentary canal below the stomach; the intestine.

Biologics - Medicines genetically engineered from living cells. They target certain proteins and enzymes in your body involved in causing inflammation.

Bile - A fluid produced by the liver and stored in the gallbladder that is used to help digest fats.

CColon - The longest part of the large intestine, which is a tube-like organ connected to the small intestine at one end and the anus at the other. The colon removes water and some nutrients and electrolytes from partially digested food.

Colonoscopy - A procedure in which a flexible, lighted tube equipped with a tiny TV camera, called a colonoscopy, is inserted into the rectum and threaded through the colon to look for any evidence of cancer, polyps, ulcers, or other abnormalities. Colonoscopy is one of several tests used to diagnose IBD.

Crohn’s Disease - A chronic disease that causes inflammation along the digestive tract. Along with ulcerative colitis, it is one of two gastrointestinal disorders classified as an inflammatory bowel disease (IBD).

Symptoms of Crohn’s disease include diarrhea, abdominal pain, cramping, bloating, weight loss, and blood in stools.

Corticosteroids - Commonly just referred to as steroids, are a common medication used in the treatment of inflammatory bowel disease (IBD) as an induction therapy.

Colectomy - The removal of the entire colon, or the afected part of the colon. This procedure is recommended for severe cases.

D

Diarrhea - The sudden, increase in frequency of loose stools compared to normal.

Diverticulitis - Illness that occurs when multiple small pouches in the large intestine become irritated or infected.

E

Endoscopy - A procedure used to visualize internal organs. An endoscope, a flexible tube with a lighted camera attached, is inserted down through the mouth, up through the rectum, or through a small incision made in the skin, depending on which part of the body is being examined. A colonoscopy, used to visualize the colon, is one type of endoscopy.

Efcacy - The ability to produce a desired or intended treatment result.

FFecal Occult Blood Test (FOBT) - A noninvasive way to screen feces for blood that’s not visible to the naked eye, known as occult blood. Typically, you are asked to provide three small stool samples and then send them to a lab for examination. If there’s blood in your stool, this indicates a need for further testing.

Fistula - An abnormal passage that forms between the bowel and nearby organs.

GGastrointestinal (GI) Tract - A series of interconnected organs that are responsible for digesting food and excreting waste products in the stool. The GI tract is essentially one long tube, starting at the mouth and ending at the anus. Diseases of the GI tract include irritable bowel syndrome and colon cancer.

Gastroenterologist - A medical physician who specializes in the diagnosis, management and treatment of a variety of digestive diseases.

Gut - The segment of the gastrointestinal tract extending from the pyloric sphincter of the stomach to the anus and as in other mammals, consists of two segments, the small intestine and the large intestine.

Gas - Air found in the body through being inhaled, swallowed or produced during digestion.

HHemorrhoids - Swollen veins in the lower part of rectum and anus that causes bleeding and discomfort. Caused due to straining during bowel movements, obesity or during pregnancy.

IInflammatory Bowel Disease - A group of intestinal disorders that cause inflammation of the digestive tract. This causes abdominal pain, cramping and unexplained weight loss. The intestine that may steadily progress, or repeatedly flare up (relapse) and calm down (remit).

Irritable Bowel Syndrome - A chronic gastrointestinal disorder that afects the large intestine causing diarrhea, abdominal pain, cramps, bloating and flatulence.

Incontinence - When stool leaves the body involuntarily.

JJ-Pouch - A colorectal surgery where a reservoir is formed from a J-shaped loop of terminal ileum where the loops are sectioned, forming a pouch and then anastomosed to create a continent anorectum, preserving anal sphincter function indications after total proctocolectomy for familial polyposis coli or ulcerative colitis totalis.

KKidney Stones - Solid masses that form in the kidney when there are high levels of calcium, oxalate, cystine, or phosphate and too little liquid.

K-Pouch - The Kock pouch is a form of a continent ileostomy, an internal bag collecting waste in place of the large intestine and colon. This procedure provides continence by allowing the patient to empty the Kock pouch through a hole in the abdomen at any convenient time.

LLiver - A large very vascular glandular organ of vertebrates that secretes bile and causes important changes in many of the substances contained in the blood (as by converting sugars into glycogen which it stores up until required and by forming urea) any of various large compound glands associated with the digestive tract of invertebrate animals and probably concerned with the secretion of digestive enzymes.

MMucus in Stools - A common symptom of some digestive conditions. Irritable bowel syndrome (IBS) and ulcerative colitis (one form of inflammatory bowel disease, or IBD) can cause it.

MRI - Magnetic Resonance Imaging; diagnostic imaging tool that uses magnets, radiofrequencies, and computers to images of structures inside the body.

MRE - Magnetic Resonance Enterography; diagnostic imaging tool used to assess certain gastrointestinal disorders.

NNausea - Sickness in the stomach with an urge to vomit.

Nutrition - The process of providing or obtaining the food necessary for health and growth.

OObstructed Bowels - A blockage in the small or large intestine, causing difculty in passing digested material normally through the bowel.

Ostomy - A life saving surgery or procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ on the outside of the body or an internal surgically created pouch for continent diversion surgeries.

PProctectomy - Surgery that removes the rectum and the anus. This means that another way will be needed for stool to leave the body, either through reattachment of the small intestine to the anus, or through a hole in the lower abdomen (known as an ileostomy).

Pouchitis - Pouchitis is inflammation that occurs in the lining of a pouch created during surgery to treat ulcerative colitis or certain other diseases.

Polyps - An abnormal growth of tissue projecting from a mucous membrane. Polyps are usually benign, but some may become malignant or cancerous.

RRectal Bleeding - Bleeding from anus, sometimes mixed with stool.

Rectum - The lower end of the large intestine, leading to the anus.

SSigmoidoscopy - A minimally invasive procedure used to diagnose intestinal symptoms and look for the presence of abnormal tissue in the rectum and sigmoid colon. Unlike a colonoscopy, a sigmoidoscopy only examines the rectum and the lower part of the large intestine, which is called the sigmoid colon. Sigmoidoscopy is often used to help diagnose IBD and in follow-up and surveillance of disease activity.

TToxic megacolon - A rare but potentially deadly complication of colonic inflammation. Its definition is a nonobstructive dilation of the colon, which can be total or segmental and is usually associated with systemic toxicity.

UUlcerative Colitis - A form of inflammatory bowel disease (IBD). The main sign of ulcerative colitis is inflammation of the colon and rectum, which causes a variety of symptoms in the gastrointestinal tract, including pain and bloody stool. Crohn’s disease is the other disease that is considered a form of IBD.

Urgency - A sudden, desperate need to go to the toilet and is most commonly associated with diarrhea dominant IBS. Incontinence may even be experienced in severe cases.

VValsalva Maneuver - Forced expiration against a closed glottis. It mimics many normal and in some cases routine activities, such as straining during defecation, blowing up a balloon, or playing the saxophone.

Villi - Tiny finger-like projections on the surface of the small intestine that help absorb nutrients.

WWeight loss (Unintentional) - Decrease in body weight without trying; may signify an underlying health condition.