Primary intestinal pseudo-obstruction (Idiopathic intestinal pseudo-obstruction): Symptoms of intestinal blockage without any physical signs of a blockage
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Hi, my name is Rosalie. I've just had an exacerbation of chronic intestinal pseudo obstruction that latest nearly 15 months. I was hardly able to eat or drink over that period - the pain and vomiting was dreadful and the acute pain was, well indescribable. I lost 17kg of weight. But that was not the worse. As I faced the inevitable after so long with such severe malnutrition and nothing but cruel and inhumane lack of treatment by doctors, I was told I "just had an eating disorder" and had a "drug problem" and "when you go into heart failure it probably is not worth resuscitating you". I have never exhibited any signs of any type of eating disorder, or any type of drug seeking behaviour. The doctors refused to talk to people who knew me well and just condemned me to a slow and agonisingly cruel death. The 15 months of the physical side was a hard road but I could deal with that - it was and is the attitude of the doctors that I'm (after a miraculous turn around in the condition - although still struggling) still having emotional difficulty with. One hospital accused me of turning down the feed flow on the pump. Because my gut was too sick too absorb the feed and it showed in blood tests etc, it was easier for them to accuse me of turning down the flow rate than to believe I was in bowel failure. (As if the nurses wouldn't have noticed!) After that I was just considered (and told to my face) that I was a lier; nothing I said was true and a manipulater with an eating disorder. I didn't know people with eating disorders could vomit food up to 6 hours after eating it, vomit gastric contents other than food whilst "nill orally" and even their own faecal matter. All of which I did in hospital (and at home). Seemed like a very odd or maybe "desperate" diagnosis to me. So that is why I am here. I don't know anyone with this condition and I'm hoping it will help me to heal emotionally to be in contact with others who may also have been so wrongly judged. I was originally diagnosed 20 years ago (by specialists now sadly not available to me) and I only have major flare ups every few years with the thing grumbling along in-between but this last one was the longest exacerbation. I felt my gut (and the pain) begin to settle again about 2 months ago. So now I take in every day - every hour and am grateful for every moment I am not in unbearable suffering. As the saying goes "day at a time"...
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