Becky’s Story

Becky can never remember eating without it causing her pain. This pain can vary but at times is so severe it causes her to collapse. We noticed the pattern of “after eating” pain occuring when Becky was approximately 5 years old. We constantly visited our local doctor a paediatrician and on numerous occasions ended up at casualty but no one could find a reason for the pain. Becky got on with her life the best she could always suffering pain. When Becky was 8 years old she developed a growth in her mouth, she was referred to an oral surgeon who informed us that her saliva gland needed to be removed. The growth was sent for biopsy, the result was an unexplained trauma that caused the cyst to grow, the cyst was benign.

Becky lost the hearing in her right ear when she was 9 years old, she literally woke up one morning and her hearing had disappeared overnight. Becky was referred to an audiologist who immediately prescribed a course of steroids as Becky was losing the hearing in her left ear as well. Becky was referred Great Ormond Street Hospital and underwent many investigations which showed that the cochlea in her right ear had been destroyed. To prevent Becky becoming totally deaf she had to stay on steroids for the next 2 years.

During this time we noticed that Becky felt less pain after eating, however when eventually she came off the steroids the pain returned with intensity. I decided to contact Dr Nigel Meadows my younger daughter Olivia’s gastroenterologist to see if perhaps there was a link between my daughters conditions. Dr Meadows decide that Becky should be investigated and when she was 13 years old she was admitted to the Royal London Hospital for several exploratory procedure. Becky underwent a PH study which showed reflux, a gastric emptying study, a barium study and an endoscopy. The gastric emptying results where one of the worst Dr Meadows had ever seen, basically the stomach muscles were not pushing the food through the digestive tract correctly. Becky was given medication to help propel the food through but it only had very limited results. Beckys condition did not improve and eventually she was put forward for a full thickness biopsy to see if she suffered from a rare digestive disorder called Chronic Intestinal Pseudo Obstruction. Sadly after the operation Becky suffered a full digestive shutdown, she was in trouble. Becky had developed ileus throughout the intestines and was unable to eat. She vomitted dark green bile from the intestines, and during the next few weeks lost nearly 2st in weight.

Initially Becky was given a saline drip, however her condition still did not improve and it was decided that she should be given T.P.N. (Total Parenteral Nutrition) via a long line. Becky remained in hospital until she was able to be fed pre-digested milk via a nasal gastric tube. Becky left hospital with an NG tube and a pump for her milk. After several months Becky had food re-introduced and gradually she began to keep the food down. Becky was diagnosed with C.I.P.S. at 14 years old. Becky suffers constant pain made worse by eating and has suffered severe hair loss due to the stress on her body caused by her pain. Becky needs daily medication and strong pain releif. Becky’s life is a constant battle – We need to eat to live . Beckys remains positive throughout everything, she attends St Martins School where she achieved 11 GCSE’s and currently is attending 6th Form studying for her A-Levels. Becky will start college in September to take her foundation diploma in art and design followed by a degree course at university. Becky does her best to live her life to the full and is truly a courageous person. Becky is an example to us all and should be admired – Becky deserves a cure to be found for this debilitating disease.

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