Living with IBD

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Contact the Inflammatory Bowel Disease Center

  • 1-617-355-6058
  • International: +01-617-355-5209

How does inflammatory bowel disease affect teens?

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.

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 effects 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 teen 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 can I help my child with inflammatory bowel disease?

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, where she can learn and connect with other teens with ulcerative colitis.
  • 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.

Everyday living for teens with inflammatory bowel disease

Many teens use these tips for living more comfortably 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 activities and hobbies are all good stress-reducers.
  • Rather than telling friends and classmates 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 if you have IBD include:

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

Navigating college with inflammatory bowel disease

While starting at 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.

Helpful College Resources for People with IBD
Going to College with IBD, from Boston Children’s Hospital

Traveling with inflammatory bowel disease
You needn’t be denied the rewards of travel because of IBD. 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.

Helpful Travel Resources for People with IBD
Traveling Abroad with IBD

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- Sandra L. Fenwick, President and CEO

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