Ulcerative colitis

We understand that you may have a lot of questions when your child is diagnosed with ulcerative colitis:

• What is it?
• What are the treatments?
• How will it affect my child long-term?

We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can talk with you more about your child’s specific diagnosis and treatment options.

What is ulcerative colitis?

Ulcerative colitis (UC) is a long-term condition that causes inflammation (redness, swelling and bleeding) of the large intestine. The most common symptoms are abdominal cramping, diarrhea and blood in the stool. It’s a chronic - but highly manageable - disease.

What are the treatments?

The primary treatments for UC are medications that reduce inflammation and/or reduce the activity of the immune system.

How will it affect my child long-term?

With regular medications and visits to the doctor, the vast majority of patients lead normal, happy lives.

What’s the difference between ulcerative colitis and Crohn’s disease?

Ulcerative colitis and Crohn’s disease are the two types of inflammatory bowel disease (IBD), and within IBD, the split is about half and half.

What is “indeterminate colitis”?

Approximately one out of 10 children have what’s called “indeterminate colitis,” which means that the doctor can’t definitively state whether the disease is UC or Crohn’s, even after thorough medical testing. Over time, many cases of indeterminate colitis will ultimately be diagnosed as either ulcerative colitis or Crohn’s.

Is inflammatory bowel disease (IBD) the same as irritable bowel syndrome (IBS)?

Understandably, people sometimes get these two conditions confused, but they’re actually very different, even though the symptoms may appear to be similar.

• In IBS, there’s no inflammation of the intestine.
• The inflammation in inflammatory bowel disease (IBD) can cause permanent scarring and damage to the intestine that may require surgery – this isn’t so with IBS.
• Different medications are used to treat IBD and IBS.
• In general, people with IBS don’t have blood in the stool.  

Sometimes it’s not clear whether a child who has IBD is experiencing an IBD flare-up or an episode of IBS, and the doctor will perform a colonoscopy to check for inflammation. If there is inflammation, it’s likely to be a flare-up of IBD.

Is inflammatory bowel disease common?

Yes, it’s quite common. Around 1.4 million Americans have inflammatory bowel disease, including around 80,000 – 100,000 children and young adults.

Why is ulcerative colitis a concern?

If your child has ulcerative colitis, he will need long-term medical care. There may be remissions - periods when the symptoms go away - that last for months or even years. However, symptoms usually return, and long-term medication is usually necessary to control the disease.

People with ulcerative colitis are at an increased risk of developing colon cancer, but this is generally not an issue in childhood.

Will my child need surgery?

Surgery might be an option if your child’s IBD isn’t responding to medicine, or has stopped responding to medicine. It could also be called for if there’s uncontrolled bleeding or perforation in your child’s intestine. But this is pretty rare – in fact, 98 percent of all treatment for UC is done with medicine, and only about a quarter of children with UC need surgery at some point in their lives.

Causes

What caused my child’s ulcerative colitis?

Scientists have not yet discovered the cause of ulcerative colitis, but it’s an area of active research. We believe that both genes and environment play a role. We also know that the immune system is involved, which is why treatment often involves medication to reduce its activity.

Symptoms

What are the symptoms of ulcerative colitis?

While ulcerative colitis may affect children differently, they most often experience frequent, bloody diarrhea. Other common symptoms include:

• abdominal pain
• fatigue
• weight loss
• loss of appetite
• rectal bleeding
• loss of body fluids and nutrients
• anemia caused by severe bleeding

Sometimes children also experience:

• skin lesions
• joint pain
• inflammation of the eyes
• liver disorders
• osteoporosis
• rashes
• kidney stones

Some infections can cause symptoms like these, and it’s important for these to be excluded as possible causes. UC can be a scary disease for a child to have, and your reassurance and support can go a long way toward making her feel better.

FAQ

Q: Will my child be all right?
A: Most likely yes. For the vast majority of children with IBD, doctors can control their condition with medication, and they can live full and happy lives. Surgery may be helpful for children who don’t respond to medicine.

Q: Will my child always have ulcerative colitis?
A: Unfortunately, since a cure for IBD has yet to be found, it’s likely that ulcerative colitis will always be a part of your child’s life. But research into better treatments – and the possibility of a cure – is ongoing, at Children’s and elsewhere.

Q: How will my child’s life change because of this disease?
A: Your child will probably have to take daily medications for the rest of her life. She’ll also have to go to regular doctors appointments and may have to stay at the hospital at some point. Other than that, there’s no reason to think that IBD will restrict your child’s life in any significant way. Many celebrities, famous athletes and even former presidents have had IBD.

Q: What’s the difference between ulcerative colitis and inflammatory bowel disease (IBD)?
A: Ulcerative colitis is one of the two major types of IBD (Crohn’s disease is the other).

Q: What’s the difference between ulcerative colitis and Crohn’s disease?
A: The main difference is that Crohn’s can affect any part of a child’s intestinal tract, including the mouth and anus. Ulcerative colitis is confined to the colon, and very rarely affects the small intestine.

Q: Is inflammatory bowel disease (IBD) the same as irritable bowel syndrome (IBS)?
A: Understandably, people sometimes get these two conditions confused, but they’re actually very different, even though the symptoms may appear to be similar.

• In IBS, there’s no inflammation of the intestine.
• The inflammation in IBD can cause permanent scarring and damage to the intestine that may require surgery – this isn’t so with IBS.
• Different medications are used to treat IBD and IBS.
• In general, people with IBS don’t have blood in the stool.  

Sometimes it’s not clear whether a child who has IBD is experiencing an IBD flare-up or an episode of IBS, and the doctor will perform a colonoscopy to check for inflammation. If there is inflammation, it’s likely to be a flare-up of IBD.

Q: Is IBD caused by stress?
A: No, there is no evidence that IBD is caused by stress. But living with a chronic illness can be stressful, and stress can make your child feel less well or even contribute to a flare-up. That’s why it’s best for your child to stay on her medical regimen even when she’s feeling well, and anticipate and prepare for stressful situations.

Q: Does my child need to follow a special diet?
A: Most often, we recommend that children simply follow the food pyramid or the dietary guidelines for Americans to ensure that they get the proper nutrition. Within those guidelines, you and your child can pick certain foods based on her preferences and how they seem to affect her UC. Some children with IBD may find it difficult to tolerate insoluble fiber, such as seeds, bran and the skin of fruit.

Some children may be able to control mild symptoms by simply avoiding the foods that seem to upset their intestines. At Children’s, our dedicated IBD nutritionist can meet with your child and your family to develop a sound nutritional plan.

Q: Should my child restrict her physical activities?
A: Generally speaking, no. As long as your child is feeling well enough to participate, physical activity is encouraged. In addition to the many other benefits of exercise, it can also help maintain bone density, which can be very helpful for children with IBD.

Q: Will my child need to be hospitalized?
A: Sometimes, a child’s symptoms may be so severe that she needs to spend some time in the hospital, so that we can correct malnutrition and stop diarrhea and the loss of blood and fluids. We may treat her with a special diet, feeding through a vein, medications, or, in some cases, surgery. But please be assured that as a valued member of your child’s health care team, you’ll be kept fully up to date at all times.

Q: What is a flare-up and what should I do if my child experiences one?
A: A flare-up is a usually a recurrence of one or more of the symptoms that originally led your child to be diagnosed with UC (e.g. diarrhea, rectal bleeding and cramping). Most people with IBD experience an occasional flare-up. If your child seems to be showing symptoms of a flare-up, it’s a good idea to check with your child’s primary care doctor or gastroenterologist.

Q: What, if anything, should I tell my child’s school about her condition?
A: Communication is key when dealing with your child’s school, and it’s a good idea to let them know of the diagnosis as early as possible. It’s important that your child’s teachers know that she may need to be excused to go to the restroom suddenly and/or frequently, and may miss school due to her illness. The school nurse can usually write a confidential memo to your child’s teachers. At Children’s, our IBD doctors and social worker will help communicate with your child’s school and draft letters explaining the illness to the school.

Q: What are some things that I can do to help my child?
A: IBD can be hard to discuss sometimes, because many of its symptoms involve things that we don’t normally talk about. But the most important thing is communication – it’s important that you be able to talk to your child about her ulcerative colitis. Be open about it, and if you’re embarrassed, don’t hide it. Let your child know that you understand that when it comes to managing her condition, a lot is being asked of her.

It’s also a good idea to learn as much as you can about IBD, talk to people who are in similar situations, and try to educate the people who are closest to you about your child’s condition.

Questions to ask your doctor

After your child is diagnosed with ulcerative colitis, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you. Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed. If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.

Some of the questions you may want to ask include:

• Could something else be causing my child’s symptoms?
• What’s the best treatment for my child right now?
• When should my child see results from this medication – in other words, when will we know whether it’s working?
• What are the side effects of the medication?
• What symptoms should I watch out for?
• Are any symptoms considered an emergency? What should we do if it happens?
• How much experience does this institution have with ulcerative colitis?
• How often should my child be monitored for changes in her condition?

Your teen and IBD

The teenage years are challenging even without having to deal with a chronic illness. Emotional mood swings and the desire for increased independence can be especially intense for teens with IBD. Understanding what your child is going through can help you support her during this important time — and help you cope, too.

Living with IBD

IBD can be an embarrassing disease for many teens, and your child may find it hard to talk about her bowel movements and tolerate invasive tests and exams. But it’s important that she feel comfortable discussing her condition so that we can best monitor her condition and make sure the treatments are working. This is why a good relationship between your child and her doctor is crucial. It may also be helpful to have another adult with whom she can talk about things that she may not feel comfortable discussing with family members.

As your child begins to feel better and gets back to her regular activities, there is a risk that she may choose not to take her meds. This is called “non-adherence,” and may happen for several reasons:  

• She may feel a strong desire to feel “normal” and ignore requirements and restrictions that make him or her feel different from peers.
• She may experience unwanted side affects from her medications.
• She may resent the need for close monitoring.
• She may find it difficult to incorporate a medical regimen into a daily routine.
• She may feel angry at having to take medications, forget to buy or take them, and otherwise take her anger out on the medications.  

Your child may also:

• feel like IBD and treatment for it has taken over her identity and decreased her self-esteem
• experience poor growth or delayed sexual maturation that can make normal teenage concerns about appearance even worse.
• feel like she has lost a sense of belonging, dignity and respect from others
• feel concern about falling behind in school
• feel as though she is being rejected by her peers, and experience loneliness or withdrawal

Of course, it’s up to your teen to decide how much she feels comfortable sharing – that’s part of letting her maintain her privacy and feelings of control. Let your teen know that while it may feel embarrassing at first, many teens find that telling their friends about their IBD strengthens their friendship – the friend is trusted with the information, and the child with IBD feels that they can trust their friend.

How you can help

It’s always challenging for a family to deal with chronic disease, and IBD may raise issues of privacy and independence that feel especially emotional. This can strain communication between you and your teen. Remember that good communication includes talking and listening, and sometimes what a teen needs most is simply to feel understood.

• Encourage your child to talk openly with you.
• Keep your initial focus on listening to what your teen is saying, and making sure you understand what she means.
• To the extent possible, include your teen in decision-making about her health care from the beginning.
• Talk with your child about her medication.
• Recognize that it can be a pain to take medicine every day.
• Make sure she knows what she is taking and why.
• Help your teen figure out ways to be reminded that it’s time to take the medicine (such as setting an alarm on her cell phone).
• Encourage your teen to find peer support among other teens with IBD. This can decrease her sense of being “different,” and reassure her that what she’s going through is normal.
• Point your child towards UC and Crohn’s, [LINK TO: http://www.ucandcrohns.org], where she can learn and connect with other teens with Crohn’s.
• Help your child to set long-term academic and vocational goals.
• Encourage healthy body images in general, especially in your teen.
• Support your teen’s efforts to sustain and develop friendships and other social relationships.
• Your child is the same person he was before the diagnosis. As you help your child work medication and other precautions into her everyday routine, help her to remember this by maintaining continuity with family life as much as possible.

For teens

Tips for living with IBD:

• Get enough rest, keep doctor’s appointments and take medicines even when feeling well. Remind her that these things are why you're feeling well.
• Always be prepared. Wherever you are, find out where the bathrooms are, and, if possible, where the least-often used ones are for more privacy.
• Anticipate things that might cause stress, and do what you can to minimize the effects. Planning well, breathing exercises, meditation and involvement in hobbies are all good stress-reducers.
• Rather than telling people nothing, give a little basic info to set the record straight. Rumors flare up in the absence of knowledge.
• Put your phone on vibrate and keep it in your pocket to remind you when you need to see the nurse or take your medicine.

Good things to keep on hand:

• soft tissues
• travel sizes of wet wipes
• extra pair of underwear
• a copy of prescriptions

College

• While starting a college is always a time of new choices and challenges, many teens with IBD are already in the habit of making choices that are good for their health. Some things to consider:
• If you have eating restrictions, ask to meet with the campus dining services’ nutritionist. If you need to be off the meal plan, certain accommodations can usually be made.
• The campus Disability Services may be able to help if you need to request a private room or a room that’s closer to a restroom.
• Familiarize yourself with the campus Health Services, and identify a physician or point person there who knows about your IBD before you arrive. Your gastroenterologist may be able to recommend someone.
• Additional information about going off to college with ulcerative colitis may be found at: IBDU.org

Travel

You needn’t be denied the rewards of travel because of Crohn’s disease. Lots of people with IBD are able to manage their condition well enough to let them focus on their destination and not their disease.

• Look online to find public toilets all over the world. You can do this even on your cell phone.
• Learn how to ask where the bathroom is in the host country’s language – you can often find this in a guide book, or ask the receptionist at your hotel.
• If you’re flying, book your ticket early and ask for an aisle seat. If you do not get one, you could politely ask another passenger to switch with you.
• Be especially careful to stick to your medical regimen for at least the week before you travel, to minimize the chances of a flare-up.
• Make sure to put medications and prescription information in your carry-on bag, since luggage does sometimes get lost and it may take some time to have it returned to you.

Remember, we’re here to help. Please contact us with any questions you have.