Jewish Health

Sara - Interview 8

Female
Age at interview: 48

Brief outline: Sara's son was diagnosed with Crohn's Disease aged 12. He's had two Parenteral Nutrition courses and a section of diseased intestine removed. Sara felt isolated and unable to talk about her son's illness, however she's since found others with similar experiences.

Background: Sara is married and has several children aged between 11-26 years. Ethnic background/nationality: Jewish White

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When Sara’s son was 12, he became unwell and went downhill over a few months, experiencing swollen legs and mouth ulcers. He had various tests and was eventually diagnosed with Crohn’s Disease after a colonoscopy and endoscopy. An 8 week diet of Parenteral Nutrition was recommended and an immunosuppressant drug. Parenteral Nutrition is a powdered milk drink substitute which Sara describes as “absolutely vile” and no other nutrition or liquid during the period. This diet was started in hospital then her son was allowed home to continue with it at home and school. At the end of October, food began to be reintroduced into his diet and he was back on a full diet in February.
 
Within two weeks he experienced a severe relapse and was put back on the Parenteral Nutrition. This time it had little effect and Sara became frustrated with the consultant who would not listen to her concerns about her son’s health. The family were due to go on a trip to Israel and steroids were prescribed for an eight week period. He reacted very badly to this medication and became very ‘hyper’ – highly charged, unnaturally energetic and ebullient. While the Crohn’s improved during that period, it returned when the he stopped taking the steroids.
 
At this stage, Sara changed consultants and the new consultant recommended removing a small part of his intestine. While this was worrying, it was agreed that this was the best option to provide her son with space to grow and thrive, which he has done. He has continued with an immunosuppressant and has 6 monthly appointments with the consultant.
 
The time of Sara’s son’s diagnosis coincided with a number of family celebrations. Sara had to look after her son and help him to cope with not eating and help organise celebrations. Her son had to cope with various festivals, the celebrations and his own bar mitzvah without enjoying the food that forms an integral part of these events.
 
Following the diet also involved considerations in the kitchen with food preparation and this was slightly more complicated during Passover because of the more special dietary rules at that time. Sara had to make sure she always had enough milk powder to cover the Sabbath or other festivals.
 

A further consideration for Sara has been telling people about her son’s illness. Outside of her immediate family, they have not openly discussed Crohn’s. Within the Orthodox community with the practice of arranged marriages, health risks are not often talked about publicly and this left Sara feeling quite isolated. She soon realised, however, that several children within her community also had Crohn’s and she has contacted their mothers who have had similar experiences. She would like to start a support group within her community in the future. 

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