Monday, October 07, 2013

A dangerous weight

In my last post, I mentioned that a close friend had given her permission for me to tell the story of how the wait for eating disorder treatment nearly killed her and has left her with permanent physical problems after life-changing emergency surgery.

Jen saw our eating disorder consultant's SHO about 6 months after her GP started the referral process. During this time, her restricting anorexia progressed to binge/purge. In desperation, she had paid £200 to see a consultant privately but eventually the NHS appointment came through. Despite the clear risk factors of someone who was restricting *and* binge/purging, the SHO simply put her on a waiting list for therapy. Her BMI was not very low, which seems to have blinded him to the serious problems inherent in her eating disorder. She saw him 5 more times, once a month, feeling increasingly desperate and yet he always said 'you're on the waiting list, maybe next month...'

A therapy assessment appointment came through and Jen attended the first of six sessions at the end of July but wasn't able to go to her session the following week. Because she was in intensive care following an emergency gastrectomy. Until I met Jen, I had no idea what a gastrectomy was. Just as a tonsillectomy is the removal of the tonsils and an appendectomy is the removal of the appendix, a gastrectomy is the removal of your gastric organ: your stomach. No one can explain the precise reasons behind Jen's experience so I can only describe it from her eyes as it happened. She had binged but was suddenly unable to purge and excruciating abdominal pain began to build.

Jen's boyfriend took her to A&E, where they were told there would be a 4 hour wait despite her being doubled over and practically crying in pain. Eventually she was seen and put on a ward because doctors couldn't work out what was wrong. After another day of tests and attempts to drain her stomach, they decided to operate because of the risk of sepsis. They discovered that about half of the tissue had died (known as necrosis) and the stomach was very enlarged. It would be incredibly dangerous for this dead tissue to remain in her system, because sepsis kills very, very quickly, so the only safe option was for surgeons to remove the entire stomach.

After the operation, Jen had 10 days of very serious illness, with cardiac problems, pleural effusions and other complications that kept her in ICU. The many months of physical rehabilitation have been followed by years of post traumatic stress: facing the start of eating disorder treatment while also adapting to the challenges of life without a stomach, when food must be consumed "little and often" in order for nutrients to be absorbed by the intestines and many ingredients are cannot be digested. Jen's life is dominated by episodes of hypoglycaemia and constant tiredness, as well as PTSD. Her wait for treatment, lengthened because doctors were too focused on weight, turned out to be very dangerous indeed.

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