Discussions By Condition: Medical Stories

Please help Sally - 2010

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • November 15, 2010
  • 03:07 AM

Dear Sally, I don't know if you are still answering posts - it looks like years since the last one - I hope so. 20 years ago I was diagnosed with extensive Crohn's. I had an excellent recovery on elemental feeding, against the consultant's advice who had no interest in diet and nutrition whatever. I also had an ileal resection, not too radical - about 12-18inches. Afterwards I got a lot worse but since I had no active disease no-one was interested. I have perhaps had 5 blood counts in the last 18 years, usually my iron is a little low and I have been treated with tablets for just a few weeks. I had no idea, that nutritional tests were not included in a blood count and can't believe they've never been requested. I couldn't digest animals or animal products for years and previousy seemed allergic to literally everything following the surgery. I stopped asking for help as every word I said seemed to be used against me. I now have neurological symptoms, parasthaesia and extreme pain for which I've had no choice but to self-medicate for years now. I also have terrible flu symptoms and feel desperately ill constantly. In the past four years I have eaten constantly, like some sort of competition, until I cried, then eaten some more and some more, until eventually my body began to accept meat etc. I am also drinking medical grade nutritional drinks. I requested b12 serum test and even after all that effort it was still just 240 - but that is considered well within normal range in the UK. I started treating myself anyway, although I know this will affect the bloods. My notes need to be transferred to a new GP which will take weeks and it will be months before I see a consultant. I felt like I was dying and still do. It couldn't wait. The new GP seems clueless but well meaning. Where should we take it from here? I would be so grateful for your advice. I was a beautiful brilliant 20 year old when my life when down the toilet. I'd do anything to get it back though paradoxically right now I feel like topping myself. I felt some immediate effect from the injections and the lozenges do work I think, though I have to take them with folate or else my symptoms are aggravated terribly. In the first week I also needed a lot of coconut water to counteract a massive nervous reaction - there is a ridiculous amount of potassium in it - though that seems to have passed as my body won't accept it any more. What tests would you ask for in my shoes? Hope you are still there, thank you Sally, Rivkah

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