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Having a child with IBD can be an emotional rollercoaster. It is hard to explain to someone so young why they do not feel well. It can also be hard on you, as a parent, to cope with seeing your child ill and dealing with the complications that go along with IBD. It is important to fully understand the disease to help your child cope.
IBD can be a very hard disease to diagnose, as symptoms vary from patient to patient. Unlike many other diseases, IBD is “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
Currently, there is no known “cure” for IBD. However, there are several strategies to combat symptoms and inflammation such as the use of medication, diet and nutrition, and surgery.
MedicationIn general, there are two kinds of medicine used to reduce symptoms and inflammation in children with CD and UC: 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. To find out more the different medications used for IBD, check out our booklet “Prescription for Health.”
Diet and Nutrition
Enteral FeedingEnteral Feeding (ET) is another strategy used as a primary therapy to treat CD 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 he feeds 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).
SurgerySurgery for Ulcerative Colitis
Removal of the large intestine and rectum (colectomy) effectively removes ulcerative colitis from your child’s gut, with the result that he is “cured” of UC. Because the rectum is gone and thus the passage for feces has been removed, his surgeon may have also created an ileostomy (connection of the small bowel to the exterior of his body). An ileostomy uses a bag (otherwise known as an ostomy appliance) attached to the skin of his abdomen for the elimination of feces.
In some cases, surgeons can convert an ileostomy to an ileal pouch anal anastomosis (IPAA). For those people who are eligible for this surgery, the IPAA offers a high degree of satisfaction because a pouch for collecting feces is made inside the body and stool continues to be expelled through the anus rather than into an ostomy bag.
Surgery for Crohn’s Disease
Because CD 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 UC, a colectomy and ileostomy are possible surgeries.
The IPAA is not usually performed on patients with CD because unlike UC, 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 CD 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.
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 IBD patients 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.
The Emotional RollercoasterIt 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 his IBD flares up, encourage him to participate in activities that are less active in nature, but nonetheless keep him engaged and occupied. This is important for his wellbeing.
Friends are a very important aspect of any child’s life. Your child may wonder what to tell her friends about her disease, or if she should say anything at all. After all, IBD is 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 her decision and support her in her choices. If she wants to share her diagnosis with friends, then by all means assist her in explaining what IBD is all about. If she prefers to keep her condition private from her friends, respect that choice whenever possible.
A few other tips for helping your child cope with IBD: