To find information about IBD on the internet, you might start with these sites:
- Crohn’s and Colitis Foundation of Canada — www.ccfc.ca
- North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition — www.naspghan.org
- The NASPGHAN pediatric patient website — www.gikids.org
- Canadian Assoc of Gastroenterology — www.cag-acg.org
- The Farncombe Family Digestive Health Research Institute — www.Farncombe.McMaster.ca
- The Hospital for Sick Children patient portal — www.sickkids.ca/ibdacademy
- The Canadian Paediatric Society — IBD
- Merck Manual of Diagnosis and Therapy — www.caringforkids.cps.ca
- Kids Dig Health — www.kidsdighealth.com
Books and brochures
If you’d rather read something in “hard copy”, please see the titles below:
- Gershon MD. The second brain: Your gut has a mind of its own. Harper Collins Publishers. 1998. New York.
- Gomi T. Everyone poops. Kane/Miller Books Publishers. 1993. New York.
- Greenwood JK. The IBD nutrition book. John Wiley & Sons, Inc. 1992. New York.
- Richard C, Morra D. Crohn’s disease — complementary and Western therapies. East Meets West. 1999. Toronto.
- Roblin N, Bird M, Cameron E, Gilbert S, Greenway W, Groll A, Simpson J. You’re bigger than it. Interfalk Canada Ltd. and Hotel-Dieu Hospital (Kingston).
- Sherkin-Langer F. If this is a test, have I passed it yet? Living with inflammatory bowel disease. MacMillan Canada. 1994. Toronto.
- Stein SH, Rood RP. Crohn’s disease and ulcerative colitis. Lippincottt-Raven Publishers. 1999. Philadelphia.
- Steiner-Grossman P, Banks PA, Present DH. (eds). The new people not patients: A source book for living with inflammatory bowel disease. Kendall/Hunt Publishing Company, USA. 1992.
- Your Child with Inflammatory Bowel Disease — A Family Guide for Caregiving — NASPGHAN
Published research from the Pediatric IBD Program
If you’re interested, these are short summaries of the some of research that we’ve completed and published in medical journals.
Psychosocial health and activity
Gold N, Issenman R, Roberts J, Watt S. Well-adjusted children: an alternate view of children with inflammatory bowel disease and functional gastrointestinal complaints. Inflamm Bowel Dis. 2000 Feb;6(1):1–7.
We surveyed 36 children with IBD and 26 children with a non-inflammatory bowel condition such as IBS. Earlier studies had suggested that pediatric IBD patients might not be as well adjusted as their healthy peers. We were thus pleasantly surprised to find that, when healthy, our patients with IBD were at least as happy and well adjusted as healthy children and teens in the community, and as busy active and accomplished as their brothers and sisters. They were much less likely than the comparison group to view their illness as a problem, feel depressed, or have behavioural problems or a poor self-image.
These positive findings may, in part, be due to our treatment philosophy and approach: proactive, multi-disciplinary, patient- and family-centered, and aggressive.
Ferry GD, Kirschner BS, Grand RJ, Issenman RM, et al. Olsalazine versus sulfasalazine in mild to moderate childhood ulcerative colitis: results of the Pediatric Gastroenterology Collaborative Research Group Clinical Trial. J Pediatr Gastroenterol Nutr. 1993 Jul;17(1):32–8.
We, along with 2 other Canadian teams and 7 American teams, compared the use of sulfasalazine and olsalazine (a newer medication of the same type) to treat mild to moderate ulcerative colitis in 56 children. Earlier studies had found sulfasalazine and olsalazine to be equally effective in adults, but olsalazine seemed to be less effective in our in pediatric population.
Hyams J. et.al. Reach Extension Study Induction and Maintenance Adulimumab Therapy for the Treatment of Moderate to Severe Crohn’s Disease in Children Clin Gastro 2011;27:651. We collaborated in studies testing new “biologic” therapies such as infliximab, adulimumab and ceertulizumab in the treatment of inflammatory bowel disease in children and teens.
Seidman E, Griffiths A, Jones A, Issenman RM, Bagnell P, Ste-Marie M, Sherman, P. Semi-elemental diet versus prednisone in the treatment of active pediatric Crohn’s disease: Results of the Canadian multicenter randomized trial.
This paper joins a body of work that suggests that a semi-elemental diet works well in about two-thirds of patients with Crohn’s disease, whereas prednisone works well in about 90% of patients at first diagnosis.
Dietary changes and body image
Green TJ, Issenman RM, Jacobson K. Patients’ diets and preferences in a pediatric population with inflammatory bowel disease. Can J Gastroenterol. 1998 Nov-Dec;12(8):544–9.
We examined the dietary practices of the pediatric IBD patients cared for by our Pediatric Gastroenterology Service, in the hope of identifying new approaches that might be worthy of further study. Most of our patients reported having made one or more changes in their dietary habits, and felt that these changes had helped to control their symptoms. Most of the reported modifications were similar to those routinely recommended by our team, and few involved new or unconventional dietary measures.
Chaimovitz R, Issenman RM, Moffitt T, Body Image and Overweight, Patients, Parents and Physicians. J Ped Gastroenterol and Nutr 2008:47;76-80
We compared perceptions of patients, their parents and physicians of body weight of children showing that both parents and physicians underestimated overweight and obesity.
Influence of exercise on health
Ploeger HE, Obeid, J, Nguyen TH, Takken T, Issenman RM, Dd Greef MHG
Sears R, Timmons BW, EXERCISE CAPACITY IN PEDIATRIC PATIENTS WITH INFLAMMATORY BOWEL DISEASE. Journal of Pediatrics. 2010 Dec 9. [Epub ahead of print] We showed that children with inflammatory bowel disease have equal power but lower stamina than healthy children of the same age.
Nguyen T, Ploeger HE, Obeid J, Issenman RM, Baker JM, Takken T, Parise G, Timmons BW. Reduced Fat Oxidation Rates During Submaximal Exercise In Adolescents With Crohn’s Disease. Accepted 2013. This study provides a possible explanation for the lower stamina seen in children and teens with Crohn’s Disease demonstrated in previous studies.
Bone density, growth, and fractures
Issenman RM, Atkinson SA, Radoja C, Fraher L. Longitudinal assessment of growth, mineral metabolism, and bone mass in pediatric Crohn’s disease. J Pediatr Gastroenterol Nutr. 1993 Nov;17(4):401-6.
In collaboration with the University of Western Ontario, we showed that chronic, low-dose prednisone therapy had no negative effects on the growth and bone mass of adolescent boys with Crohn’s disease. During 2 years of monitoring, the growth and bone mass of boys who had regularly received low-dose prednisone was similar to that of boys whose use of prednisone had been minimal. Since then, we have increasingly been using other drugs that avoid long-term prednisone use.
Gupta A, Paski S, Issenman R, Webber C. Lumbar spine bone mineral density at diagnosis and during follow-up in children with IBD. J Clin Densitom. 2004 Fall;7(3):290–5.
We assessed bone density (shortly after diagnosis, and again after a follow-up period of several years) in 123 IBD patients and compared their results to those of a group of healthy children of similar age. Overall, the healthy group and patients with ulcerative colitis had similar bone density. In contrast, bone density in patients with Crohn’s disease was lower, on average, than in healthy children but gradually improved over time.
Persad R, Jaffar I, Issenman RM, Prevalence of skeletal fracture in children with inflammatory bowel disease. J Ped Gastroenterol and Nutr 2006:43;5-11. We showed that despite having higher bone density patients with Crohn’s Disease had fewer skeletal fractures than their healthy siblings.
Non-invasive alternatives or complements to conventional diagnostic tests such as colonoscopy
Issenman RM, Jenkins RT, Radoja C. Intestinal permeability compared in pediatric and adult patients with inflammatory bowel disease. Clin Invest Med. 1993 Jun;16(3):187–96.
The permeability (“leakiness”) of the bowel wall may increase when inflammation is present. This leakiness, which can be measured non-invasively, was known to increase in adults with active IBD. We therefore explored whether the same was true for children with active disease. We found increased intestinal permeability in 75 children with active IBD. In many cases, the elevation persisted despite treatment that caused IBD symptoms to decrease. Thus, even though tests of intestinal permeability cannot determine which segment(s) of the bowel are affected, may be helpful in helping understand what causes IBD.
Lemberg DA, Issenman RM, et al. Positron tomography in the investigation of paediatric inflammatory bowel disease. Inflamm Bowel Dis. 2005 Aug;11(8):733–896.
In this study, we showed that positron emission tomography (PET) scanning may be a useful non-invasive tool to detect and localize areas of inflamed bowel in children with IBD. PET scanning correctly identified active inflammatory disease in 80% of children with IBD, and correctly failed to detect evidence of inflammation in a group of children known to not have IBD. This technique may be particularly helpful when traditional tests such as colonoscopy cannot be used.
Information provided by health food stores
Calder J, Issenman R, Cawdron R. Health information provided by retail health food outlets. Can J Gastroenterol. 2000 Oct;14(9):767–71.
More and more patients, including those with IBD, are choosing to include complementary/alternative practitioners and/or health food stores as partners in their care. Many, however, do not tell their doctor that they use such treatments. To assess the information provided by health food stores, a research assistant posed as the mother of a 6-year-old who had just been diagnosed with Crohn’s disease. We found that most of the 32 randomly chosen retail health food stores used the same book as a reference text. Since this reference text deals more with nutritional supplements than herbal supplements, staff mostly recommended the use of one or more nutritional supplements. Although none of the advice given seemed to clearly put the patient’s health at risk, the safety and effectiveness of the recommendations could not be assessed. In particular, only a few store staff indicated that they taken the age of the “patient” into account.
IBD-focused internet resources
Cawdron R, Issenman R. Patient web-resource interest and internet readiness in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2002 Oct;35(4):518–21.
To assess how useful the internet might be for pediatric IBD patients to learn about and discuss their illness, we surveyed our 8- to 18-year-old IBD patients. Nearly all (95%+) had access to and experience with the internet, and most (over 90%) expressed an interest in using the internet to learn about their condition. Only 52% had ever done so, however, and only 1.5% had done so in the week before they completed the survey. Thus, it seems that interest in web-based IBD resources is high, but actual usage is much lower.
Use of new medical records technology
Issenman RM, Jaffer IH. Use of voice recognition software in an outpatient pediatric specialty practice. Pediatrics. 2004 Sep;114(3):e290–3.
We explored the use of specialized voice recognition/word processing software as an alternative to the conventional transcription process for medical records. Our hope was to enhance physician efficiency, improve patient safety, and reduce administrative costs. Unfortunately, under the conditions of the test, use of the software led to a tripling of the amount of time needed for the physician to dictate and correct medical records and a doubling of the cost of creating the records.