Living with Crohn’s & Colitis

Signs and symptoms

Crohn’s and colitis can be very hard diseases to diagnose, as symptoms vary from patient to patient. Unlike many other diseases, they are “invisible.” In fact, due to the side effects of certain medications, your child may even appear to be robust and healthy. In some ways, this makes it more difficult because his or her health challenges are not as obvious as someone who might be in a cast or sling.

Some signs you should watch for are:

•  Fatigue
•  Diarrhea (possibly bloody), often frequent or urgent
•  Abdominal pain
•  Cramping
•  Gas and bloating
•  Loss of appetite
•  Weight loss
•  Delay in growth

Currently, there is no known “cure” for Crohn’s or colitis. However, there are several strategies to combat symptoms and inflammation such as the use of medication, diet and nutrition, and surgery.

To find out more please visit our signs and symptoms page.

Medication

In general, there are two kinds of medicine used to reduce symptoms and inflammation in children with Crohn’s and colitis: drugs that are used to reduce inflammation (and therefore may reduce symptoms) and drugs that are aimed at symptom reduction. There are five types of drugs used to combat inflammation: Sulfasalazine and 5-ASA, Steroids, Immunomodulators, Biologicals, and Antibiotics. Each kind of drug reduces inflammation in a different way. 

Drugs that are used to reduce symptoms can generally be purchased “off the shelf” in your pharmacy. However, it is important not to self-prescribe, and to be sure to discuss options for your child with your doctor. Some examples include: antidiarrheals, ointments and suppositories, antispasmodics, bulk formers, bile salt binders, stool softeners, analgesics, acid reducers, nonsteroidal antiinflammatories, and vitamins and minerals.

It is natural for a parent to feel very protective of a child with Crohn’s or colitis; however, be careful not to overdo it. In fact, it is wise to encourage your child to assume responsibility for their medical routines as soon as they are mature enough to handle it.

To learn more about the different medication options used for the treatmentCrohn’s and colitis, please visit our Medication and Treatments page.

Watch the video below to hear from a parent discuss their child living ulcerative colitis and how treatment and educational support have helped their family.

Diet and Nutrition

It is important that your child has a well-balanced diet, but it is important to pay special attention to your child’s diet if he or she has Crohn’s or colitis.
Malnutrition may occur from not eating or the lack of absorption in the gut.You may be advised to provide your child with supplements including minerals and vitamins if they are not absorbed from food.

Watch out for “trigger foods.” Current research shows that what your child eats does not CAUSE a flare-up, but may exacerbate symptoms if he or she does eat foods that aggravate the gut. Identifying those foods which are triggers for your child is an important part of your day-to-day strategy in helping them live with Crohn’s or colitis

It is also important to identify what her “safe” foods are, which are foods that are unique to her and do not appear to bother her digestive tract. Some people find the BRAT diet helpful when in a flare-up (bananas, white rice, applesauce and toast)

Your child may be willing to accept a liquid supplement when regular food is unappealing to them, which offers balanced nutrition and give your child’s gut a chance to rest as they are easily digested.

To learn more about the role of diet and nutrition in the management of Crohn's and colitis, please visit our Diet and Nutrition page.

Enteral Feeding

Enteral feeding is another strategy used as a primary therapy to treat Crohn’s disease or as a secondary treatment for malnutrition and growth failure. A nasogastric (NG) tube is inserted down your child’s nose into his stomach. A medicinal food supplement is then administered through the tube. This tube can be removed or tucked behind your child’s ear during the day if they feed at night. 

Enteral feeding may last from one to three months if all of your child’s nutritional needs are being met this way. Some children choose to have a stomach tube (gastrostomy) for nocturnal feedings instead of an NG tube if they are suffering from extensive malnutrition. 

If a child is acutely ill and unable to get adequate nutrition either by mouth or enteral feeds, it may be necessary to place her on total parenteral nutrition (TPN). In this case, liquid nutrition is administered through an intravenous site (rather than through an NG tube).

To find out more about enteral feeding, please visit our Nutritional Therapies page. 

Surgery

Surgery for Ulcerative Colitis 

Removal of the large intestine and rectum (colectomy) may be recommended as a treatment for severe cases of ulcerative colitis. Because the rectum is gone and thus the passage for feces has been removed, a surgeon may have to create an ileostomy (connection of the small bowel to the exterior of the body). An ileostomy uses a bag (otherwise known as an ostomy appliance) attached to the skin of the abdomen to collect expelled feces.

In some cases, surgeons can convert an ileostomy to an ileal pouch anal anastomosis (an IPAA, also sometimes referred to as a pelvic pouch). For those who are eligible for this surgery, the IPAA offers a high degree of satisfaction because a pouch for collecting feces is made inside your body and stool continues to be expelled though the anus rather than into an ostomy bag.

Surgery for Crohn’s Disease

Because Crohn’s disease can involve any part of the GI tract, there are many varied surgical treatments. If you have acquired an abscess, stricture, or obstruction, a resection (removal of all or part of a section of the gut) may be required to repair the problem. In some cases, a strictureplasty can be done to open up a narrowed segment of the intestine. As with colitis, a colectomy and ileostomy are possible surgeries.

The IPAA is not usually performed on patients with Crohn’s because, unlike colitis, the disease can recur after the procedure is done. This necessitates further surgery and potentially the removal of the internal pouch. 

In addition to bowel­-specific surgery, patients with Crohn’s can also have surgery to treat problems associated with complications of the disease. For example, if you have developed a fistula, there are procedures available to reduce the pain and pus. 

Laparoscopic Surgery

Minimally invasive surgery, or laparoscopic surgery, is performed through small incisions in the abdomen with the aid of special instruments and a camera. Because of the smaller scars, younger people find the prospects of this surgery more appealing than “open surgery.” In addition, healing time is faster and there is less post­-operative pain. 

Unfortunately, not all people with Crohn’s and colitis are candidates for laparoscopic surgery, usually because of extensive scarring (adhesions) within the abdomen or because the disease is so extensive that a wider field of view is needed than that offered by the scope.

To find out more about surgical treatments/options, please visit our Surgery page. 

The Emotional Roller Coaster

It is hard for any child to have to go through a life-changing illness. However, with your support and the proper management of the disease, your child will have many opportunities to be just like other kids. This concept is important to children, as they fear exclusion or being different. We encourage you to get your child involved in hobbies and sports. When their Crohn’s or colitis flares up, encourage him to participate in activities that are less active in nature, but nonetheless keep them engaged and occupied. This is important for their wellbeing.

Friends are a very important aspect of any child’s life. Your child may wonder what to tell their friends about their disease, or if they should say anything at all. After all, Crohn’s and colitis are difficult to explain and the fear that some of the other children may be thoughtless and cruel after such a discussion may only make your child feel more vulnerable. This is an area where you, as a parent, should respect their decision and support them in their choices. If they want to share their diagnosis with friends, then by all means assist them in explaining what the disease is all about. If they prefer to keep their condition private from their friends, respect that choice whenever possible. 

Depression may occur if your child is older and their self esteem and body image are fragile. Be alert to any signs that your child is withdrawing or having difficulties coping with school, friends and activities.

Don’t be too hard on yourself or on other members of your family as you work through these challenges together

To learn more about coping with Crohn's and colitis, please visit our Mental Health page.

Watch the video below to learn about the connection between mental health and IBD. This presentation is from our Youth Education Series. 
 

Summer Camp for Kids with Crohn's or Colitis

Crohn's and Colitis Canada has made the summer camp experience available for kids with ulcerative colitis and Crohn's disease. Camp Got2Go is a great experience that creates lifelong friends and memories while helping kids learn to live with the challenges of inflammatory bowel disease.

Find out more at campgot2go.ca

Transitioning to Adulthood

Making the transition to adulthood is a particularly challenging time for both kids and their parents. Some go off to school, leaving both the familiar home AND medical teams. All transition from pediatric care to adult care at some point, becoming more responsible for their own health decisions, medications – all while facing the challenges of post-secondary education, new jobs and careers, relationships and possibly families. Crohn's and Colitis has resources to help.

Watch the video below to learn from expert gastroenterologist and person living with IBD about the transition from child to adult care: :

Click the video below to watch a Gutsy Learning Series presentation featuring an expert pediatric gastroenterologist discuss the transition from child to adult care:

 

IBD Scholarships program

Crohn's and Colitis Canada, with support from AbbVie, are proud to help post-secondary students (of any age) continue their education with the AbbVie IBD Scholarships. The scholarships provide support of up to $5,000 to ten students attending school in Canada.

Find out more at ibdscholarship.ca

Other Information and Resources

Find your community. Crohn’s and Colitis Canada has local chapters across the country, which will allow you to access information that will enable you to help your child. You will meet other parents who are learning how to support a child with Crohn’s or colitis, and, in many cases, other youth who are living with these diseases.

To help your child's teacher(s) better understand Crohn's or colitis, and understand why accommodations for your child may be needed, our Teacher's Guide and Letter to Your Child's School can both be beneficial.

Visit our Support for You page for additional education resoures and to learn about our child and youth support programs.

We’ve created thank you certificates that kids and youth can fill out and present to their Crohn’s and colitis heroes. Download the fillable PDF certificates below:
Thank You Certificate – Kids
Thank You Certificate – Youth