Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
As someone with cystic fibrosis, Lynch Syndrome, and CF-related diabetes, preparing for a colonoscopy can be a challenge. Fortunately, I've become very well-versed in how colonoscopies work and how to prepare for them over the past 10 years.
September 20, 2018
My Emotional Wellness Toolkit
Using Art as an Outlet
In 2008, I was diagnosed with Lynch Syndrome -- a condition that predisposes you to certain types of cancers, the main one being colon cancer. Since I also have cystic fibrosis, my chances of developing colorectal cancer are ridiculously high. Unlike the typical person with CF, this means that I must undergo a colonoscopy every year.
Although I have become very well-versed in how colonoscopies work and how to prepare for them over the years, this was not always the case. In fact, the first few times I had a colonoscopy, I had to repeat the exam (and everything that went into preparing for it) because the prep I had done was insufficient.
Not only was I unaware of the differences between my digestive system and the digestive system of someone without CF, but colorectal cancer was not really on the radar of many CF docs 10 years ago; so, neither was the prep.
Fortunately, however, my endoscopist, my CF care team, and I have learned a few lessons over the years that have made preparing for my yearly colonoscopy far less daunting.
As I mentioned above, the CF digestive system is very different than the average person's. Our systems are slower and full of mucus, so it takes much more time, and greater quantities of prep solution, to clean us out sufficiently.
When I have a colonoscopy, I spend three or four days prepping for the exam. Since constipation is an ongoing issue for me, I also have learned that I need to start taking a dose of MiraLAX® each day at least 7-10 days prior to the exam. Personally, I also avoid high-fiber foods like broccoli, grains, etc., for the week or two before my colonoscopy since I've found that I have a harder time digesting these foods, which can increase the amount of stool in my colon. But obviously, it's different for everyone.
The most important part of preparing for a colonoscopy when you have CF, however, is splitting up the bowel cleansing solution into three or four separate sets of 64 ounces. It works great! By drinking the bowel cleansing solution in multiple, smaller washes, your colon gets cleaned out much better.
CF-related diabetes (CFRD) can also complicate your colonoscopy prep. This past year was my first time getting a colonoscopy as a person with CFRD, so I worked with my diabetes doctor to ensure that my prep would go smoothly.
Certain foods or food colors can ruin the hard work that you put in, so knowing what to eat during your prep is vital. For me personally, a clear liquid diet is the recommended diet during my prep, which I start the day before I begin drinking the solution. During this time, I MUST avoid all red, purple, or blue foods and dairy -- which includes most soups and ice cream. Nothing solid is to be consumed.
Because of my CFRD, my doctor also recommended a few changes the last time I had a colonoscopy. Apple juice and lemonade were my drinks of choice, but because of their sugar content, I switched to G2™ and Crystal Light™ lemonade. I also purchased the sugar-free Jell-O® snack cups to supplement the regular Jell-O® that I made.
Examples of what I eat:
The hardest part of the procedure is the prep. However, there are a few things to be aware of for procedure day.
The first is that you will need a ride home, which means an actual person must meet you in the office/waiting area. Because the sedatives they give you during the exam affect everyone differently, the hospital will not let you take a cab, Uber, or Lyft home to ensure your safety.
Though the procedure itself takes less than an hour, I typically spend a few hours at the hospital. For me, there is at least an hour before the scheduled exam time spent in pre-op getting an IV placed, answering questions, and meeting with the team of doctors who will be performing the procedure. If your endoscopist finds any polyps, he or she will remove them during the procedure. This eliminates the need to return a second time.
Once the exam is over and you're in recovery, you will have to pass gas before they will let you leave. And they must hear it. Don't worry, they are used to it. And if you are anything like me, when you wake up coughing, you will involuntarily pass gas with your coughing. They like that.
Knowing that people with CF have a higher risk of colon cancer can seem daunting. We already deal with so much and face enough challenges trying to balance daily life with our health. Now, we may have to add in a three or four-day prep for a procedure that has always seemed for the “old.” I hope that by explaining what I go through, and why, it will help ease some of the burden.
As someone who has had 10 to 12 colonoscopies in the last decade, they still slightly stress me out to this day. I don't like the prep work. But, I know I need to have them done so that I can be sure I don't develop cancer. Plus, I am finally equipped with the knowledge of what to expect and how to get the best results so that I can at least feel prepared and confident in a sufficient prep.
Join the conversation on Facebook.
Adult with CF
Amy was diagnosed with cystic fibrosis in 1987 at the age of 6. She lives outside of Boston with her husband and two stepchildren. Amy earned her B.S. in interior design and her M.A. in history and has a passion for both. Although unable to work, she concentrates on maintaining her health and expanding her crafting skills. She also has her own blog about life with CF, Mastering the Art of Breathing.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails