Thanks Kathy :) Thankfully I DON'T look like that anymore! Here
is a much healthier (and happier) one for comparison!
SE - I can't remember if I put a lot of that part of my 'history' in my intro post, because when I joined I was looking for information on the SCS leads coming up to my surgery. Might as well tell it here...
In late '07 I started getting a lot of nausea, lost a bit of weight, but just put it down to everything going on around me. My CRPS was 'just' in my right leg, but quite bad, I was sitting my finals in vet school, lots of stress... Early '08 it went from nausea to a bit of vomiting, then a lot of vomiting.
I ended up in hospital dehydrated and with my potassium at dangerously low levels, and my GP sent me to a GI specialist. Did all the routine stuff, scans, scopes, then a gastric emptying study. For the study I had, 'normal' meant that 70% or more of the tracer should have left the stomach after 90 minutes. My result was 20%
I can't tolerate metoclopramide - I found that out the hard way after being given it by my local doctor one day and nearly driving into a tree on my way home from the clinic, so that was out as any sort of management tool. The GI guys here don't like using it anyway because of the potential of long term side effects. We tried domperidone, but in very rare cases it can alter hormone levels and trigger a lactation cycle.
I was one of those very rare cases, and even on a minuscule dose I started running milk Throughout all this, I had a wonderful dietitian who was digging out every nutritional supplement she could find for me, but all were causing me to bloat, to vomit and not helping me to put any weigh on - or even to maintain my weight. In the end we worked out that it was because almost all contain either lactose or fructose, and I wasn't tolerating either.
I don't tolerate wheat very well either, and my stomach couldn't even cope with rice by that stage. I was surviving on runny porridge and sugar for extra energy, and of course my weight kept dropping. My parents, GP, specialist, kept pushing me to go into hospital for treatment, but I was absolutely terrified of hospitals at that time and I'd kind of had enough of treatment, was so sick and depressed that I really didn't want to deal with anything else - especially as most people other than my parents and MY doctors were taking one look at me and diagnosing me with anorexia nervosa, accusing me of starving myself, etc.
As I got worse, my GI doc put in an authority request for Cisapride, which is a heavily restricted drug here. I had to have the full gamut of cardiac assessment - ECG, echo, holter testing, etc., and in all this, we found that I had a prolonged QT interval, and a resting heart rate that at that time rarely fell below about 120bpm
Despite all that, he somehow managed after a few months of hassling to get authority for a drug trial - had to have it done in hospital - but it changed my ECG dangerously and we had to stop it. It was by this time that I was down to the 60lb in weight. I was so weak that before going into hospital I was sleeping on the couch because I was too weak to get into bed.
My body temperature was sitting at about 34-35C, my HR at below 40bpm. For myself, I would happily have died at that time because I was so sick, in so much pain and so over it that I didn't care anymore, but knew I couldn't do that to my family so agreed to have a naso-jejunal tube placed. Can't remember now how long I spent in hospital - weeks and weeks and weeks - on enteral feeding, rehydrating, stabilising my heart issues, electrolytes etc.
I barely remember my time there, save being interrogated by a 'gaggle' of psychiatrists (they reminded me of geese - a little team of them waddled in one behind the other) because yet another person had decided that I was obviously anorexic. Looking back it is amazing that I survived - I was so sick that nobody expected me to
Laure I split your post here up a little more, as I want all members to be able to read it! It is an amazing story, and I don't know how you got through it all. Thanks! SE
Post Edited By Moderator (Screaming Eagle) : 8/19/2011 7:41:30 AM (GMT-6)