Patient FAQs

Whether you're new to a diagnosis or have known about it for a long time, becoming well-informed is important to your well-being. Expecting your doctors to know it all and to act on it is unreasonable. We're all humans and can only know so much. Knowing all you can about the healthcare system, your diagnosis, your symptoms, and your options is your responsibility. A good doctor will appreciate your knowledge about your health. Learn, ask, read, learn! Then take what you learn and talk to your doctor.

Click on the blue question mark to the left of each question to go right to the question. Or you can scroll down and read through all the information. Use the email link provided at the bottom of the page if you have questions that you don't see answered here.

"I have to have some tests done now. What are they and what will they be like?"
"My doctors are unable to figure out the cause of my digestion problems. Is there anything I can try to figure it out on my own?"
"My gut seems to be having spasms. Is there anything the doctor might be able to prescribe to help?"
"I have heard the term "intussusception" used, and that it is a risk of PJS. What is it?"
"The doctor found cysts on my ovaries. Should I be worried?"
"What is short bowel syndrome?"
"I would like to be in some clinical research studies I have read about. But I can't afford the travel or hotel room to actually do it. Is there any way to get help?"
"I am thinking of having kids. My doctor suggested that I think about talking to a genetic counselor. What is genetic counseling all about?"
"Just how am I supposed to know what will and will not increase or decrease my risk of getting breast or ovarian cancer? There are so many different viewpoints, it seems."
"How can I guard against medical errors happening to me or to my child?"

"I have to have some tests done now. What are they and what will they be like?"

A barium enema, also known as "lower gastrointestinal series," involves the use of barium sulfate put into the large intestine through a tube and x-rays taken as the barium moves through the intestine. Click here to read more about this test.
A CT scan, or CAT scan, uses x-rays, but in a different way than you might be used to. A computed axial tomography (CAT) scan has a thin x-ray beam travel around the patient. A computer analyzes the data. For more information, click here.
A colonoscopy makes use of fiber-optics to view the lower intestine. More information is available here.
Diagnostic laparoscopy involves a minimal incision in the abdomen so a scope can be passed into the abdomen to observe the bowels or other organs in the abdominal cavity. Click here for more information.
Enteroclysis, also known as a small bowel enema, makes use of a tube passed through the nose and into the small intestine. A barium mixture is pumped into the tube and monitored with fluoroscopic examination. More information on this test is available here.
An MRI, magnetic resonance imaging, uses magnets and radio waves to create pictures of the body. For more information, go here.
A sigmoidoscopy may also be known as proctoscopy or proctosigmoidoscopy. This test makes use of a small camera to image the inside of the large intestine. Click here for more information.
The ultrasound, or sonogram, uses sound waves to examine internal organs. More information on this test is available here.

"My doctors are unable to figure out the cause of my digestion problems. Is there anything I can try to figure it out on my own?"
There are a number of things you can do to help you and your medical team learn the root of digestive problems. Approach it from many different ways and learn what works for you and what doesn't work for you. Be your own digestive "super sleuth." A list of ideas to help you get started is available here.

"My gut seems to be having spasms. Is there anything the doctor might be able to prescribe to help?"
There is a class of prescription drugs known as antispasmodics or antichlorogenics. Click here to go to a list of these drugs that are available in the United States and Canada. Print out the list and take it to your doctor to discuss. Having gut spasms certainly can be a problem. Just be aware that there may be a chance that your situation would not be helped by taking this type of drug. Your doctor can give you more complete information.

"I have heard the term "intussusception" used, and that it is a risk of PJS. What is it?"
Intussusception, besides being hard to pronounce and spell for most of us, is a serious complication that needs to be watched for in children and adults alike. This applies to those with PJS or other syndromes that cause problems with the intestines. An intussusception happens when the intestine telescopes on itself. Without proper treatment, very serious complications can happen. For more information, click here. While this particular link focuses on children, the information can be applied to adults as well. In the general population, intussusceptions are more likely to occur in very young children. For those with PJS, intussusceptions occur without regard to age.

"The doctor found cysts on my ovaries. Should I be worried?"
Small cysts that come and go with your menstrual cycle are common and resolve themselves. However, ovarian sex cord tumors are another matter. These tumors are generally microscopic. They are rare in the general population, but common for women with PJS. Ovarian sex cord tumors are usually benign. They can cause hormonal problems including heavy and irregular periods. They can also cause a variety of abnormal cysts, tumors and even cancers of the reproductive system. These usually do not resolve themselves and have to be managed with surgery.

If you have any problems in this area, you may want to consider seeing a gynecological oncologist. If you would like more information, click here. If you have been diagnosed with ovarian cancer, visit this site for some helpful information that is easy to understand.

"What is short bowel syndrome?"
Short bowel syndrome (SBS) occurs when a person has a very small amount of their small intestine that is working. A normal person has about twenty-two (22) feet of small intestne. Some may have as little as twenty-two (22) inches of small intestine. Pieces may be sewn together during surgery to salvage any bowel possible. For more information from a patient's point of view, go to the No Guts Country Club.

"I would like to be in some clinical research studies I have read about. But I can't afford the travel or hotel room to actually do it. Is there any way to get help?"
For those with rare or life-threatening diseases and disorders, there are resources for getting free or reduced travel and lodging so it is easier to receive specialized treatments and tests. The Office of Rare Diseases maintains a list of resources to help patients. Go to http://rarediseases.info.nih.gov/ and click on Patient Travel and Lodging.

"I am thinking of having kids. My doctor suggested that I think about talking to a genetic counselor. What is genetic counseling all about?"
Genetic counseling can seem a bit daunting when you first hear about it. Yale Cancer Center has a FAQ (Frequently Asked Questions) page that may help you. After reading that, they do have resources you can access. The decision is always yours whether to have genetic testing and counseling. There are pros and cons you need to know about and think through before making your decision.

"Just how am I supposed to know what will and will not increase or decrease my risk of getting breast or ovarian cancer? There are so many different viewpoints, it seems."
There certainly are different viewpoints regarding determining cancer risk factors. The CDC's Office of Genomics and Disease Prevention has collected some information to help you decide how to view your cancer risk. This is part of their Public Health Perspective Series.

"How can I guard against medical errors happening to me or to my child?"
There are things you can do to help prevent medical errors from happening. These errors can happen at the doctor's office, in the hospital, and at home. The Agency for Healthcare Research and Quality has provided some fact sheets. Visit 20 Tips to Help Prevent Medical Errors and 20 Tips to Help Prevent Medical Errors in Children for some good advice.

Update: 23.Feb.'04