more afraid of the chemo than the tumor?
Most alarming, and seen in the New York Times article about a small study on avoiding re-feeding syndrome, is the idea that the patient's desires and distress should be part of the calculation. Yes, eating disorder patients find it traumatic and undesirable to gain weight more quickly or at all -- that's the most prominent symptom of an eating disorder! Avoiding re-feeding syndrome is a VERY important medical issue but can not be obscured by the patient's cognitions and insight.
What if chemo patients were treated this way: their tumors were considered less of a danger than the chemo? Insulin shots and chemo and debriding wounds are all distressing and traumatic but our job is to comfort and support our loved ones through that and not to damage their health by avoiding appropriate medical care.
It's been a while since I've commented (though I still read everyday) -- but I do have to comment on this.
ReplyDeleteI think care does need to be taken around re-feeding emaciated patients. I can only offer anecdotal evidence, but at a BMI of 15 I was eating roughly 700 calories/day. I saw an outpatient dietician and slowly increased my calories to 1100 and then to 1300 over a period of 3 weeks. As I began to lose weight (around a BMI of 14.5) we jumped the calories quite quickly to 1600 and then 2000. Both myself and my dietican thought this would be fine because the rate of increase had been so slow.
However, I was also being seen by a eating disorder psychiatrist during the time and he did some bloodwork after one appointment. He called my parents in a panic (I was at university during this time -- yes, I went away to university THAT sick) and told them (breaking confidentiality)that I needed an prescription for phosphate supplementation immediately as I had developed refeeding syndrome. My parent called the oral phosphate supplements into the university pharmacy.
My point in telling this story is that even with slow increases in calories, I developed hypophosphatemia that could have quickly developed into something more severe. My BMI was low, but not as low as some individuals for whom re-feeding syndrome might be more common. Therefore, I don't know if we can make the simple assumption that "start low, go slow" is incorrect or overly cautious. Re-feeding syndrome is a risk for all patients with AN (though it is likely more common at lower weights). I think this needs to be assessed on an individual basis.
In addition, I don't think we can simply disregard the fear of AN patients in terms of calorie increases. Certainly, adequate calories to prevent further weight loss is necessary. However, (especially with adult patients) it is possible that raising calories too quickly can be physically uncomfortable/psychologically distressing. Some psychological distress IS expected with re-feeding, but severe distress can lead to treatment drop-out or rapid weight cycling. . . If the patient is out of medical danger there is some question as to whether stressing the patient to the extent of self-harm, purging, bingeing or treatment drop-out is worth it. That is not to say give up on weight gain, but simply adequate calories to induce 1-2lb of weight gain/week might be a safer bet for adult patients. . .
I have more thoughts, but this post is already too long.
PS. I was treated by Dr. Debra Katzman as an adolescent :P
A:)
Body building is doing more for me, as I may have said in other comments, than any amount of professional help I've had. I HAVE to eat well and often to put on muscle, and putting on muscle means a period of putting on fat. I am challenging myself to the extreme to allow myself the much needed body fat. I've just done two comps (my first) and placed last. I looked anorexic, as I was. My trainer is a very patient woman, and a realist. She says it bluntly and I appreciate it.
ReplyDeleteSimply, if I want to stay anorexic, I will NEVER win a body building comp, and I am not to waste her time. It is that simple. I want to win (being a perfectionist) and I want to experience being 'normal'. I want to feel and experience more muscle. I love feeling so strong. I love challenging my beliefs about myself.
It is hard yakka, to feel the stomach jelly belly and see my thighs wobble when I squat heavy weights. My natural inclination is to not eat, but then it ruins what I'm setting out to do. I have no choice but to face my anorexia full on while I opt to win a body building comp.
Re-feeding after a comp was hideous. HIDEOUS. I'm glad I was never hsopitalised, for I would have resented the staff, my family, everyone. It was bad enough doing it alone! But I'm glad I did. Shows I have more in me than I imagine. Yes, I do agree that the psychological distress is horrid, and the physiological discomfort is enough to make me not want to eat again. But seeing my comp photos spurs me on. I want to have boulder shoulders and huge hamstrings. Re-feeding is the exilir to life; not survival, but LIFE.