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 April 10, 2009, 04:45:20 PM
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Newbie
Posts: 4
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My name is James Swift, Im 17 years old and just a normal kid
* months ago while preparing to go on a hiking trip i discovered what i thought to be a pulled muscle in my back which was causing me some discomfort, one day later im in agony barely able to move with an incredibly sharp and stabbing pain in my left flank, one trip to accident and emergency and im lying up in the surgical ward of my local hospital, my diagnosis, kidney stone that had casued a urine infection, after 3 days i am released. For the past 8 months i have been living in constant pain, i have been re-admitted to hospital in emergeny conditions 5 times since, all for around a week, i got out from my last admission 3 hours ago, came home and decided i needed to find out how other people were dealing with this. The doctors have admitted to me that they are stumped by my condition, i didnt have kidney stones atoll, a complete wrong diagnosis. My left flank aches constantly and occisionally i have such severe bouts of pain i end up in hospital on iv paracetamol and receiving regular morphine injections just to let the pain subside somewhat
In 8 months i have had, a CT scan an MRI, and full abdominal ultrasound, 3 flexi sigmoindoscopies (colonoscopies) a small bowel study a white cell scan a capsule endoscopy and too many blood tests for me to know what they were all for, including all kind of rare conditions, lead poisoning etc, yet doctors are no closer to finding out whats wrong with me, ive had IBS, Crohns and various other bowel conditions ruled out and the imaging scans have shown no sign of a structural abnormality or defect and all bloods and white cell scan have shown zero sign of infection, yet im in pain every minute of every day, im tired, my muscles ache i struggle to perform the simplest of tasks before i break into a sweat and my light head stops me from continuing, I have been taking Dihydrocodeine, Tramadol and Diclofenac which do help me take the edge of my pain but at teh same time i try to go without for large periods of time without them in order to stop myself becoming addicted
Ive never given such a full account but tbh im starting to struggle now and am despairing that this might never be over, i know many of you have struggled for far longer with far worse but this is ruining my life, im only 17 and it is so hard to make any further plans becasue i never know what my health has in store for me next
No one wil probably read this or respond but just getting this out in the open i guess helps a bit
Thanks for reading and ill be so gratefull for any response i get
James
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April 10, 2009, 08:09:52 PM
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Group: Administrator
VIP Member
Gender: 
Posts: 920
I Will Be Diagnosed !
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Hi James  So sorry to hear yet another person suffering from an undiagnosed illness  You've had alot of tests over 8 months, I feel your frustration.... Do you have copies of all your tests ? blood work too ? Just trying to follow the path most of us here try...Most tests show nothing of concern, but if we take a closer look maybe small pieces of the puzzle can be found, so if you have copies of all reports/procedures that might help us help you. For instance I have a small lipoma, Doctors say nothing of concern, but this has lead me to research more, which may help my case in the future, so while they say ALL CLEAR.. something, maybe something can help us onto the next course of action. If you'd like to share abit more about all of these. Only other option I can think of at present is have you ever seen a Muscleskeltal Specialist? Be Strong, I know how hard this is. It does ruin lives........
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April 10, 2009, 08:35:49 PM
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Newbie
Posts: 4
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Hey there Samantha,
Thanks very much for the reply, nice to know someone else understands, so far everything has come back relatively normal, only things that have been slightly off are during the week following this last strong attack my blood pressure has been slightly lower than usual, this could just be becasue of my age and fitness levels. First colonoscopy showed two small little ulcers which were biopsied but never found to be anything, i was told that these could have been caused by the quite vigorous bowel prep they give you prior to the procedure. That is really all that is not completely normal, still waiting on results of the lead blood test ( not holding my breath, doctors said this was a very big longshot that was really just them trying to score sometihng else of the list) and also waiting on the results of a blood test to check enzyme acitvity, to see if something in my adrenal gland isnt working as it should, but again doctors arent holding out much hope of these coming back anything other than totally normal
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April 10, 2009, 10:21:24 PM
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Full Member
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Posts: 125
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Hey James  Sorry to hear about what you're going through.. I'm also very young like yourself (19), and it's hard, especially on someone who has their whole life ahead of them. Reading about the procedures you've taken the last 8 months, it seems that you have some good doctors who genuinely care about you, and are not hesitant to give you the tests you need. I have been struggling with bowel problems also, but have not even had a colonoscopy done in my 3 years of dealing with my symptoms. I totally understand the frustration that you're in. I hope that you'll find the help and support you need here. =] -Jenny
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April 11, 2009, 12:58:56 AM
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Sr. Member
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Posts: 319
Tired..
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hey buddy, welcome to the party! I hope we can help you find some answers, i really do. It is rough that's for sure. I started getting sick when I was 18, i'm almost 22 now. So don't worry man you're not alone in this. I would definitely like to see some lab work that you've had and more detailed accounts of what you've gone through. And sorry to break it to you, but you're wrong, people do read this Last thing, Did you have a colonoscopy or a sigmoidoscopy? The reason i ask is that they are NOT the same. Sigmoidoscopys only view the sigmoid colon, which is the very distal end of the colon. the last maybe 6 inches or so, they dont include the full length of the colon. You need to make sure which one you've had and get yourself a full length colonoscopy if you havent allready. keep me posted!
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If you have to ask, you are not ready to know -
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April 11, 2009, 03:04:42 PM
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Newbie
Posts: 4
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Wow i didnt expect so many responses so quickly, its such a relief to know people are going through the same and are here
yes sorry im not completely up on my terms, i try to block the whole camera up the ass thing as much as possible, ive had the full length investigated and two less thorough ones just to try and spot where im bleeding from, thats another thing i forgot to mention i regularily bleed from the tail end, again nothing can be found to explain this either
I was thinking maybe they should check stomach with an endoscopy, id imagine blood can run all the way throguh, but maybe then id more likely to see blood in sick rather than other end. Not sure
First day out today, strange getting back into things, really knakcered though, all my energy has just been sapped, got to try and build myself back up a bit i guess
again thanks for all the responses
James
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April 12, 2009, 03:21:37 AM
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Sr. Member
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Posts: 319
Tired..
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Yeah we're pretty well known for responding quickly :) And its totally understandable man, I had a colonoscopy too, it sucked. Prep for it was awful. Hang in there dude An endoscopy doesn't sound like a such a bad idea, you're right blood in the stomach will travel all the way through your gastrointestinal tract. Interestingly the color of the blood can give you a pretty good idea of where the bleed is, the higher up the bleed is in your body (stomach or small intestines) , it will have more time to "digest" the blood, Turning your stools tarry and Black. if the the bleed is closer to the rectum (large intestine) then it will be red. What color is yours? sorry, no modesty here!
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April 18, 2009, 12:30:38 PM
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Full Member
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Posts: 232
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G'day James, I'm old(er) but have a similar story to yours, left side pain out of the blue, same tests, same tablets even. They haven't found an answer for me yet, 3 years plus now, but with any luck tomorrow may be the day and then maybe we'll both be cured.
I'm so sorry that you have to put up with this especially since you are so young, and it's really not fair, but this is a nice place to talk about it I've found. Just having someone really understand is good.
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April 18, 2009, 12:36:25 PM
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Newbie
Posts: 4
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HAHA i think he was talking about the laxative prep, its far less fun than sleeping
ill try and get a copy of bloods and test stuff, they dont seem to willing to give it out, and all they really say is there is absolutely nothing that isnt normal, apart from two tiny polyps found during the colonoscopy absolutely nothing else out of the ordinary :(
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