Dispelling the myths about Crohn’s and Colitis
Wednesday 7th February 2018
Cross Community Audience Hears Practitioners Share Their Medical Expertise On Crohn’s And Colitis
A medical information evening at Kinloss Gardens – Dispelling The Myths About Crohn’s and Colitis – attracted a diverse audience from across the Jewish community. Four leading medical practitioners shared their experiences of treating the inflammatory bowel diseases Crohn’s and Colitis, conditions known to be particularly prevalent in the Jewish Ashkenazi community.
WATCH THE VIDEO HERE
The event, presented by Crohn’s and Colitis charity Jewish Digest in association with Camp Simcha, was moderated by Consultant Gastroenterologist Dr Steven Mann, Clinical Lead for Inflammatory Bowel Diseases at Barnet Hospital, Royal Free London NHS Foundation Trust.
Dr Clive Onnie, Consultant Physician and Gastroenterologist at the Whittington Hospital and an expert in the genetic origins of Crohn’s and Colitis, embarked on “a slow trot through the latest treatment options.” Since IBD tends to be a lifelong condition, new entries on the treatment horizon are scrutinised with great interest not only by the medical profession but also by patients and their families.
“New medicines focus on the immune system in order to suppress inflammation,” Dr Onnie said, adding that the goal is to heal the lining of the bowel and restore it to normality. “Early treatment is key to prevent the inflammation worsening. Using two immune suppressants in tandem has proved to be the best option for controlling this condition.”
Mild to moderate drug treatments well tested over time – Mesalazine, Mercaptopurine and Azothiaprine – were augmented in 1998 with the introduction of Infliximab, the first of a range of biologic drugs for the treatment of IBD along with other autoimmune diseases. Other biologic drugs followed such as Humira, Vedolizumab and in the last few months, Ustekinumab. These immunosuppressant medications, administered either by infusion or subcutaneously, have exerted a dramatic effect in producing healing in moderate to severe disease.
Dr Onnie emphasised that the best outcomes are created by a multidisciplinary approach that includes a consultant, a GI (gastrointestinal tract) specialist nurse and a dietitian. “You should seize the opportunity to get on top of things as soon as you can. When should a person see a consultant? When things just don’t feel right.”
Senior Dietitian Naomi Joseph considered the frequently asked question, is there a specific diet for IBD? The purpose of dietary treatment is to reduce symptoms while maintaining a balanced intake of healthy foods. A liquid nutritional formula given over six to eight weeks can sometimes be administered instead of steroids to damp down inflammation .
The Low Fodmap diet , a process of elimination of known carbohydrates that are difficult to digest, has been found to be useful in some cases. Other foods are gradually reintroduced after 6-8 weeks. Its use in inflammatory bowel disease remains unproven.
The Special Carbohydrate Diet (SCD) which surfaced in America some time ago allows only protein, fruits and vegetables, with few grain or dairy products. Its twelve month duration makes it difficult to maintain. Studies on this diet come mostly from the US and its effectiveness is still not proven.
Lofflex is a type of exclusion diet that limits wheat, lactose, fat and fibre and takes around four months to complete. Since it is not a balanced diet, it requires the addition of a multivitamin supplement.
Evidence for the value of probiotics, a current hot topic, in Crohn’s or Colitis to maintain or induce remission is at a low level. “It’s important to find a diet tailored to individual needs. The attempt to control symptoms by eliminating a dietary trigger should only be carried out under the supervision of a dietitian.”
Dr Sarah McCartney, Consultant Gastroenterologist at University College Hospital, specialises in specific challenges for young people with IBD. 25% of people with IBD first present in adolescence and adolescents make up a large cohort of the IBD population. Young people with Crohn’s disease don’t always show classic symptoms. They could present with joint pain, fever, loss of weight, lack of growth or even with psychiatric issues. IBD in young people tends to be more severe and extensive with a higher risk of complications.
Caring for children and adolescents in the right way teaches them to maintain their medication and to contact their nurse specialist as soon as they feel they need support.
Transitioning from adolescent to adult care poses particular problems. Dr McCartney quoted some reaction of young people who made the change from one system to the other. “I felt anxious and scared about leaving a doctor I could trust.” “I had relied on my parents to make appointments, contact doctors, organise medication . . .” “I wanted someone to talk to me, not to my parents.” “Since adolescents are not keen for parents to make all the decisions, we see them both with and without their parents,” Dr McCartney said.
Dr Julian Stern, Consultant Psychiatrist in Psychotherapy at the Tavistock Clinic, whose special interest is IBD, pointed out that even under normal circumstances adolescence can be a stormy time. How much more so in the case of young people with IBD who also have to deal with embarrassing symptoms, the stigma of feeling “different “which may cause them to avoid school and social situations and the side effects of medications and sometimes surgery.
“Crohn’s and Colitis are complicated conditions coming at a complicated time.” Because there tends to be a family predisposition to these illnesses, parents may feel a degree of guilt that causes them to overcompensate.” Parental attention tends to focus on the child who is unwell and this can lead to siblings experiencing “survivor guilt”.
Dr Stern added that the resilience that parents and families need can be greatly bolstered by resources offered by the community, schools and welfare organisations. He referred to the buddying system that Jewish Digest is currently introducing, which allows people with Crohn’s and Colitis, including adolescents, to contact others with similar conditions, helping to relieve isolation by talking through issues that concern them. Nurse specialists whose function is to help with psychological issues arising from these medical conditions are also a valuable resource.