Teen Guide: Dealing with Crohn’s & Colitis
Your doctor has just told you and your parents or guardians that you have inflammatory bowel disease (IBD). Now what?
To start, you probably have a lot of questions. Some of the most commonly asked ones are:
What is IBD?
How did I get it?
Is there a cure?
Is IBD deadly?
Will I be able to go to school, hang out with my friends or play sports?
We wrote A Guide for Teens with IBD for teens 13–18 to answer these and other questions and to provide you with important information and support that can help you manage and live well with IBD.
Learning more about IBD can help you get through the day, even when part of you is not feeling so well.
Download A Guide for Teens with IBD
What is IBD
Inflammatory bowel disease (IBD) is a chronic (lifelong) disease that causes inflammation of the gastrointestinal (GI) tract. The two main types of IBD are Crohn’s disease and ulcerative colitis.
The GI tract is responsible for digestion of food, absorption of nutrients, and elimination of waste from the body. The GI tract includes all of the parts of the body that digest food. It starts with your mouth (oral cavity) and continues down your throat into your esophagus, and through your stomach, small intestine, large intestine, rectum, and ends with your anus. Inflammation impairs the ability of affected GI organs to work properly.
Crohn’s disease and ulcerative colitis are very similar, but there are important differences. A third type of IBD, indeterminate colitis can sometimes be diagnosed.
What are the symptoms of IBD?
Inflammation can prevent your GI tract from working normally, which can lead to IBD symptoms. The symptoms you have depend on the disease, its location, and how severe it is. They may change over time or even disappear for a while. Keep in mind that you may not have every symptom and that symptoms are not the same for everyone. They often go away once the inflammation is under control. When symptoms return, it is called a flare.
Common symptoms of IBD are:
· An urgent need to go to the bathroom
· Frequent diarrhea, sometimes bloody
· Poor absorption of nutrients
· Poor appetite
· Weight loss
· Feeling tired
· Pain in the abdominal area
Sometimes IBD causes symptoms outside the GI tract:
· Joint pain and stiffness
· Mouth ulcers
· Fever (indicates inflammation somewhere in the body)
· Eye irritation
· Skin rash
How did I get IBD?
More than 1.6 million people in the United States have IBD. People of any age, from infants to older adults, can develop IBD. It most often starts in people between the ages of 15 and 35. It is not contagious, so no one gave it to you and you can’t pass it on to anyone else.
We don’t understand exactly what causes IBD, or how to prevent it. Scientists suspect that a combination of four factors lead to IBD.
· Genes: certain genes (family traits) make it more likely you will get IBD.
· Environment: something that your body comes in contact with, such as bacteria, certain medications, smoke, or toxins.
· Intestinal bacteria: the good and bad bacteria in the body are not balanced.
· Immune system response: the immune system mistakes something like helpful bacteria for something harmful and attacks it, causing inflammation.
IBD is not caused by stress or diet, but once you have IBD, both stress and diet affect your condition.
Is There a Cure?
There is currently no cure for IBD. It is a chronic (long-term) disease with no known cause or cure, but there are many effective treatments that can control your disease symptoms. Research is making incredible progress and many new treatments have been developed.
Is IBD deadly?
No. IBD is a chronic, long-term disease, but not a fatal one.
What About Treatments?
Treatment for IBD can include a variety of prescription medicines (Rx) and over-the-counter medications (OTC) that you can buy without a prescription.
Doctors and other HCPs will try one or a combination of medications to see what works best for you. Which medications are used will be different for each person. If you know someone else with IBD, their medication will not likely be exactly the same as yours.
It is important to discuss and understand the side effects of your medication. Discuss them with your nurse or doctor. If you experience side effects, let your parents and health care professionals know immediately.
Managing Symptom Discomfort
The medications that are prescribed for you may not get rid of all your symptoms. Sometimes your health care provider may recommend an over-the-counter (OTC) product. These OTCs can help:
· Relieve diarrhea
· Reduce bloating and gas
· Reduce joint pain and fever
· Relieve irritation of the skin around the anus and other
When you have symptoms or discomfort, be sure to write them down and let your parents and doctor know about them.
How Does Food Affect My IBD Symptoms?
Diet and nutrition are important parts of IBD management. “Diet” refers to the foods we eat. “Nutrition” is a term that refers to properly absorbing food and staying healthy.
Since IBD affects the organs responsible for absorbing vitamins, nutrients, and water, it is important that you maintain a healthy diet with proper nutrition.
With IBD, you’ll need to pay more attention to what you eat than you ever did before. There is no evidence to suggest that any particular food or diet causes, prevents, or cures IBD.
When experiencing symptoms, it may help to follow some of the food tips below:
· Eat smaller meals more often
· Reduce the amount of greasy or fried foods you eat
· Avoid trigger foods (foods that make your symptoms worse)
· Limit eating certain high-fiber foods such as seeds, nuts, popcorn, beans, green leafy vegetables, wheat bran, and raw fruits and vegetables
· Limit drinking milk or milk products if you are lactose intolerant
· Avoid caffeine in coffee, tea, soda, and other beverages (caffeine can act as a stimulant to “rev” up the bowel resulting in diarrhea)
· Consider vitamin and mineral supplements, such as vitamin D and calcium, if your HCP approves
· Sometimes during a flare you will become dehydrated and need to drink extra fluids
Life with IBD
School and work, doing what you enjoy, and keeping healthy are all affected by IBD. You can do things to make your life easier.
· Most people with IBD need to take medication for the rest of their lives.
· You may have symptoms that range from mild to severe.
· You will have times when you have flares with active symptoms.
· You will have times of remission and good health.
Will I be able to go to school, hang out with my friends, or play sports?
Yes. You will be able to do many of the same activities that you did before. However, you may need to take certain precautions and rearrange your plans when you are not feeling well or you are too tired.
Coping with IBD
Your IBD symptoms may disappear at times, but you never know when they’re going to become a problem. If you are prepared and take care of yourself, these symptoms won’t limit your life.
Since you haven’t changed, remember who you are.
· You are more than your IBD. Accept your illness and continue to do what you enjoy.
· Explore the activities you enjoyed before IBD and try new ones. Modify them, if you have to, so you can participate fully.
· Form friendships with people who understand and support you.
· Participate in a regular exercise routine, with your doctor’s approval. Exercise can improve overall health, reduce stress, and help to maintain and improve bone strength.
Emotional Help and Support
You might feel anxious or depressed. IBD patients may have more stress than others. This is common because they have to deal with problems related to their IBD.
Talking with your parents, friends, and other people with IBD can be helpful. If you need more help, talk to your doctor or another professional, like a teacher or guidance counselor, about how you feel. They can help you to cope with your feelings and those of the people around you. They’ve learned what works by talking to many people.
There will be times when your disease is in deep and durable remission and you feel great. But at other times, IBD symptoms are unpredictable. Just in case you need it, be prepared with emergency supplies. Carry the basics in your purse or backpack.
You might want to include the following:
· Toilet paper
· Wet wipes
· Hand sanitizer
· Small can of air freshener
· Disposable gloves (to handle any soiled clothes)
· Large-sized freezer bags (for the soiled clothes)
· Clean underwear
· Clean shorts, pants, or leggings (anything that you can wear until you get home)
People and Places Around Me
What do I say to my friends when they ask me what’s wrong? It’s hard to know how to respond to
questions. It’s hard to be someplace I don’t know.
Who do I tell about my disease?
The easy answer is “tell whomever you want, whatever you want,” but that isn’t always easy to figure out. You have to decide how much to tell the people around you about your illness.
Some people, like your parents, guardians, and the school nurse, will need to know details. If you are away from home, maybe at college, someone needs to be your health care point person for when your doctor’s not available. They need to know your history, symptoms, and the emergency care that works. Others, like your teachers and your boss, only need to know some details to understand how your IBD symptoms can affect your daily life.
What about school?
Whether it’s middle school, high school, college, or a job, you spend a lot of time in these places. Because IBD is unpredictable, you’ll need a backup plan with someone who knows what’s what.
Your IBD and treatments might affect your school attendance or performance. You might have to miss school when you have medical appointments or if you’re feeling really bad during a flare. Remember, you are still responsible for learning the required subject matter. To help you do that, your parents can request a 504 (Accommodation) Plan. Once your health care professionals and the school identify how your IBD could affect you in school, a 504 Plan is created that lists the accommodations, special services, or adjustments that you might need.
Final Thought to Remember
Now that you know what IBD is, remember these important ideas.
· Nothing you ate or did gave you IBD.
· You didn’t catch it from anyone else.
· Most people who live with IBD are healthy more often than they are sick.
· Ask your doctor questions so you can learn more about managing your IBD.
· Understand that sometimes the disease might be a hurdle, but overcoming these hurdles will make you stronger.
· Keep working towards your goals. Remember there are successful doctors, lawyers, business people, celebrities, and professional athletes with IBD.
· To keep track of your medication, disease symptoms, and foods that cause you problems, use helpful tools like:
o Food Journal
o Medication Log
o GI Buddy
o My IBD Journal
· Don’t go it alone, get support from:
o Family and friends
o Other IBD patients
o Health care professionals
You’ll have a ton of questions about your illness, many now and many more as time goes on. That’s okay.
You’ll be doing yourself a big favor if you learn as much as you can about your IBD and how it affects your body. Just ask! One place to learn more is www.ccfa.org .
For further information, call CCFA at our Information Resource Center: 888.MY.GUT.PAIN (888.694.8872).
The Crohn’s & Colitis Foundation of America provides information for educational purposes only. We encourage you to review this educational material with your health care professional. The Foundation does not provide medical or other health care opinions or services. The inclusion of another organization’s resources or referral to another organization does not represent an endorsement of a particular individual, group, company or product.
About this resource
Published: December 10, 2014