IBD Frequently Asked Questions
Can IBD be cured?
Unfortunately, we do not have medicines that will make the disease go away. However, even though we have no cure, there are medicines you can take to make you feel good. In some people with ulcerative colitis, removing the colon can “cure” them of the disease.
However, removing the colon can also have negative side effects, so we usually try to control the disease with medications first. Many people are doing research to find a cure for IBD.
What is the treatment for IBD?
Medications for IBD help control inflammation. By reducing inflammation, they make you feel better and improve your daily living. Since IBD is chronic, most patients need to take medications throughout their life. People who stop their medication after they start feeling well often relapse and get sick again.
There are many different types of medications to treat IBD. Sometimes finding the right medication can take time. Also not every medication starts working right away. Your doctor will help you get on the right medication.
Some of the most common medications to treat IBD work directly on your intestine to decrease inflammation. These medications include mesalamine agents that you take by mouth (Pentasa®, Asacol®, Lialda®, Colazal®) or you put into your rectum (Rowasa®, Canasa®). Other medications work in your blood stream to dampen your immune system(prednisone, Entocort ®, 6-MP, azathioprine (Imuran), methotrexate, Remicade®, Humira®).
Why do I need to take medication even if I feel well?
It is important to stay on your medication(s) so that the inflammation in your GI tract is constantly under control. If you miss taking your medication, you may start feeling sick again. You may also not able to absorb all of the important nutrients that you need to develop and grow to your full potential. You may also develop complications from the disease such as narrowing or perforation of the intestine.
Lastly, you may also experience problems outside the GI tract such as eye pain, severe joint pain, mouth sores and rashes. Keeping a calendar may make it easier to remember to take your medicine.
What are the specific issues for kids with IBD?
Having a chronic disease is challenging, especially when you are trying to balance school, sports, hobbies and friends. It is common to feel overwhelmed by the disease at times. Some kids skip taking their medications or even skip appointments with their doctor because they wish they could forget they have the disease. This may cause symptoms to become even worse.
Kids often struggle with managing their symptoms when they are at school or with their friends. It is common to feel embarrassed by having to use the bathroom often or accidentally passing gas. It is also common to feel tired sometimes and not want to do your normal activities. Talking freely with your friends, teachers and coaches about your disease may help reduce your embarrassment.
Many kids with IBD also feel very self-conscious about their bodies. Some kids get very skinny because of their disease and others gain a lot of weight. Some medications for IBD cause acne. Some kids even undergo surgery because of their disease and are left with scars or even an ostomy bag. It is important to talk to your doctor about any body image concerns you have.
What is a flare? What causes it? How do I get better?
When a patient goes from having very few to no symptoms from their IBD to having a lot of symptoms (such as abdominal pain, diarrhea, nausea, joint pains), we say that he or she is in a flare. Flares can be caused by many things such as skipping medications, new medications and infection. Stress and diet may also play a role.
In some cases, the reasons for the flare cannot be determined. If you are having a flare it is essential that you let your doctor know. Your doctor will advise you on the best way to get better. Sometimes this will mean changing your diet and sometimes it will mean starting a new medication. Some patients may need to come to the hospital to get special medications they cannot get at home.
Corticosteroids, or steroids, for short, are medications like prednisone that are really good at getting IBD under control during a flare. You may wonder why doctors don’t just keep you on steroids forever, since they work pretty well for IBD. It’s because steroids can have many of bad side effects, especially when taken for a long time (like many months).
Steroids can cause weight gain and slow down height growth. They can cause mood swings and too much hair growth in both boys and girls. They can also weaken bones (something called osteoporosis). That’s why doctors try to have you on steroids for just a short while, until your disease is under control.
Sometimes doctors will prescribe steroids in pill or liquid form that you can take at home. If you are not better after the pill steroids, they sometimes have you come to the hospital to get the steroids through your vein.