I do a lot of work to bring about awareness of Krohn's Disease (which I have) and Ulcerative Colitis, so I was wondering how many people really know what it is. If you do, where did you learn about it? If you know someone with either would you be willing to share a story about it with me? Especially if the person is younger, like me and the people I talk to about it...Do you have any questions about it you would like to ask me? Thanks so much! *Crohn's, sorry for the mispelling, it was a typo I have known a few people with Crohn's disease, and with Ulcerative Colitis. There are a couple of groups on Yahoo that can help you meet others with the disease, and can help you with symptoms, medicines, and other issues. I joined a group for IBD and it really helps with food choices, and figuring out what to expect. If you do awareness about this you would realize that is is spelled Crohns disease with a C not a K. Just an FYI. I have a friend that has Chrones and he has to constantly use the bathroom and is very skinny. I know some stuff about it but I havent ever researched it. Not alot of people know about it. My wife has UC, and she is 25. She was diagnosed at 22. seeing as it isn't that common i actually know 4 people with the problem, 2 are a mother and son, one is my best friends father and the other is a old friend, the son who inherited it was only 24 when diagnosed and the others i think have had it since around the same age Crohn's disease and ulcerative colitis, also collectively known as inflammatory bowel disease (IBD). When you or your loved one is first diagnosed with inflammatory bowel disease, you probably feel overwhelmed. You may not even have heard of Crohn's disease or ulcerative colitis until now. You may have many questions about how this disease will affect you. Learning all you can is an important step toward taking charge of your illness -- and your life.
These pages are designed to help you understand more about the diagnosis and treatment of IBD, and its impact on the day-to-day lives of patients and their families. The better informed you are about IBD, the more equipped you'll be to participate as an active member of your healthcare team.
For the most part, the treatment approaches for children with IBD are based on adult experience. Children require individualized treatment that takes numerous factors into account: the specific disease manifestations (location of inflammation in the intestines, duration, prior response to therapy), the psychosocial adaptation of the child and family, and the child's age and size. Drug dosages also must be tailored, based upon the child's weight.
Children and adolescents are moving through a period of physical and emotional growth and development. Special consideration must be given to potential side effects and to issues of compliance with the prescribed treatment regimen. Regrettably, few well-designed clinical trials have generated data that specifically address the effectiveness of standard medications in children. However, the safety profile of these drugs has been supported by many years of use in pediatric clinical practice. Recently, the FDA mandated that the safety and effectiveness of new drugs be established in children and adolescents. Therefore, we anticipate that the number of studies of medications in the pediatric population will be dramatically increasing.
All of the medications used for adults with IBD are also used for children, and the indications and contraindications are similar. This section attempts to address the special considerations when the medications described above are prescribed for children and teenagers.
Aminosalicylates
For treating mild-to-moderate, active ulcerative colitis and Crohn's colitis in children, 5-aminosalicylate (5-ASA) compounds remain the initial therapy in most cases. Although sulfasalazine clearly is effective, its use has generally declined in favor of mesalamine and olsalazine products, which have fewer side effects. Side effects from sulfasalazine may include headache, sun sensitivity rash, or other signs of sulfa allergy.
5-ASA may be taken rectally or orally. The dosages for a child are extrapolated on a per-kilogram basis from data in adults. The number of pills required (as many as 10-16 per day), and the frequency of administration for effectiveness (3-4 times per day) makes compliance with Asacol,庐 Colazal,鈩?or Pentasa庐 difficult for young patients. The dosage schedule will have to be carefully considered in light of the child's schedule: Should a dose be included or excluded during the school day? Parents may want to involve the child in this decision to aid compliance.
Special consideration must be given to the younger child who is unable to swallow tablets or capsules. Although a commercially available form of liquid sulfasalazine is no longer available, many pharmacies will formulate one if requested. Additionally, Pentasa capsules may be opened and the contents placed in yogurt or peanut butter.
For the child or adolescent with left-sided colonic inflammation, topical therapy with a 5-ASA suppository or enema often helps and has minimal potential side effects. Enema therapy may be a daunting prospect at first, but with education, support, and guidance, many patients and families adapt readily to this treatment.
Corticosteroids
Topical treatment
In the child with mild-to-moderate, active ulcerative colitis with symptoms predominantly of left-sided colitis (tenesmus, a persistent urge to empty the bowel; urgency), rectal preparations of corticosteroids (foam, enema) are often prescribed, along with oral 5-ASA compounds. When tenesmus and urgency are particularly severe, foam may be tolerated better than cortisone enema preparations.
Oral and parenteral treatment
When mild-to-moderate, active ulcerative colitis or Crohn's disease do not improve, oral corticosteroids are prescribed on an outpatient basis. Dosages are determined on a per-kilogram basis. Often, sulfasalazine or mesalamine will be continued, in addition to steroids. Once again, the indications and dosages of corticosteroids for children who are more significantly ill and admitted to the hospital are similar to those in adults. Intravenous corticosteroids are administered at the hospital. Once remission is induced, the corticosteroid dosage is tapered gradually, with the goal of discontinuing this therapy altogether. Less commonly, with "steroid-dependent" disease (symptoms that respond only to steroid therapy), small dosages are given daily or every other day.
Side effects
The cosmetic side effects of corticosteroids may be disturbing to the child and overwhelming to the adolescent, and may lead to poor compliance. Unwelcome side effects may include facial swelling, excessive weight gain, hair growth, and acne. Fortunately, these are temporary conditions that disappear when the dose is lowered or the medication discontinued. Less commonly, high-dose steroid therapy may produce "stretch marks." The puffiness that accompanies steroid therapy can be reduced to some degree by lowering the child's salt intake.
As in adults, the list of potential side effects of long-term steroid usage in children is extensive. Some of the complications鈥攕uch as mood swings or personality change and high blood pressure鈥攁re most likely related to the higher dosages prescribed. (These complications probably are more common in, although not exclusive to, adults.) In children, failure to grow and a decreased supply of the necessary minerals used to build strong bones (bone mineralization) are difficult problems that occur with long-term steroid therapy. If the disease is severe enough to require long-term steroid therapy, alternate-day therapy appears to lessen the impact on growth.
To minimize the risk of osteoporosis, it is important to ensure adequate calcium intake in all IBD patients. For patients on chronic steroid therapy or those with chronically active IBD, physicians may recommend a DEXA scan (a special X-ray) to evaluate bone mineral density. Osteonecrosis (bone deterioration) of the hip, although a recognized complication of steroid therapy in adults, is seldom a problem in children or adolescents.
One possible complication of steroid (or other immunosuppressive) therapy is seldom mentioned. This is the risk of overwhelming varicella (chicken pox) infection. If a "varicella-na茂ve" child (one who has not had chicken pox and has not been vaccinated) is taking steroids or 6-MP and is exposed to chicken pox, the child's physician should be notified immediately. In this case, an injection of varicella zoster immune globulin (VZIG) would be recommended to limit the potential severity of chicken pox. A full discussion of your child's immunization history with your doctor may help to minimize the risk of this complication.
Steroids do not make children with IBD more prone to develop colds or other infections. Similarly, children who have been on steroids do not appear to be at higher risk for adrenal insufficiency if they develop routine viral or bacterial illnesses soon after steroid treatment is discontinued. (Adrenal insufficiency refers to the impaired production of various hormones that the body needs in order to function properly.) However, stress doses of steroids should be considered before general anesthesia for surgery and during the ensuing 24 to 48 hours, to protect against potential adrenal insufficiency during the "stress" of surgery.
Antibiotics
Specific antimicrobial agents may be beneficial in treating IBD, particularly distal (left-sided) colitis or perianal disease.
Metronidazole is used in children and adolescents with perianal Crohn's disease. It is also used as an alternative, or in addition, to sulfasalazine or steroids for Crohn's colitis. The dosage prescribed depends on the weight of the child and is conveniently given with meals. Teenagers should be told that alcohol and metronidazole do not mix and may result in severe nausea and vomiting. Long-term therapy may lead to reversible peripheral neuropathy (nerve damage); if this occurs, the drug must be stopped.
Ciprofloxacin has been shown to be effective for treating adults with colitis, and is used as an alternative to metronidazole for perianal Crohn's disease. In the past, ciprofloxacin was not recommended for pre-pubescent children. However, prior concerns have not been validated in clinical use in children with cystic fibrosis or IBD, and the drug's safety profile is quite positive. Ive known fo 2 gals who have Crones disease
since 1974
they are both doing better well most of the time |
