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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Symptoms but undiagnosed. Advice needed


03-10-2016, 01:17 PM   #1
Dmarks70
 
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Symptoms but undiagnosed. Advice needed

First post so be gentle with me! I've had abdominal pains for almost 2 years. Went down ibs route. Colonoscopy was clear although I ended up in hospital bleeding. My calprotectin levels have risen every time I have one. The latest was 317 which I know is not particularly high. I had a pill cam which showed inflammation and ulcers. Doctor wants to put me on steroids but won't diagnose me with anything. I suffer from right sided pain, fatigue, joint pain and arms and legs feel very heavy. However I don't have diarrhoea. I'm worried that if the steroids reduce the inflammation I'll just be discharged as doc has said still could be ibs and not ibd. Am I just being silly wanting a diagnosis or does this sound like it could be early crohns? Thanks for reading and your help.
03-10-2016, 02:27 PM   #2
fuzzy butterfly
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Hi and welcome to the forum. I am sorry you are having such trouble. I am not a doctor but sounds like possible crohn's to me. I don't think you are being silly at all, you are so right in wanting to know what the heck is going on. Most people don't suffer joint pain and fatigue with ibs or so I believe (not sure tho). Not everyone has diarrhea and can even be constipated. So that isn't always a good marker for Crohn's.
Your doctor should not discharge you if the steroids work, mine didn't when they helped me. Really it should mean that you are having trouble that should be dealt with. Best wishes n let us know how you get on. 💕
I have just seen your in Manchester to
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03-10-2016, 11:21 PM   #3
ronroush7
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Keep pushing until you get satisfactory answers.
03-11-2016, 06:25 AM   #4
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Thanks for the replies. When I speak to my doc. she seems to think that it's mild, that my calprotectin is only 'slightly' high and that the fatigue and heaviness are probably nothing to with it. She said she will see me again during the course of steroids but it is just so frustrating! I still think she thinks I am making it up even though the pill cam and calprotectin are indicating that there might be an issue.
03-11-2016, 06:26 AM   #5
ronroush7
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Thanks for the replies. When I speak to my doc. she seems to think that it's mild, that my calprotectin is only 'slightly' high and that the fatigue and heaviness are probably nothing to with it. She said she will see me again during the course of steroids but it is just so frustrating! I still think she thinks I am making it up even though the pill cam and calprotectin are indicating that there might be an issue.
I am sorry

03-11-2016, 12:55 PM   #6
fuzzy butterfly
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Hi im sorry, but you should ask her if she wants to have it for a week. Then she can tell you its mild. Is this your gp. If so tell her you want to see a gastroenterologist . As they know more than a gp on intestinal matters. Dont be fobbed off its your health n your body not hers . Please try n get the best help possible. Best wishes 💕💕
03-11-2016, 05:56 PM   #7
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This is the gastroenterologist that has been saying all this to me. I've got a GPs appointment on Thursday to tell them things have flared up again but will probably be told to come back in a few weeks if things haven't changed as that's what they normally seem to say! I know it sounds odd but I'd feel better if I got diagnosed with something!!
03-11-2016, 05:58 PM   #8
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This is the gastroenterologist that has been saying all this to me. I've got a GPs appointment on Thursday to tell them things have flared up again but will probably be told to come back in a few weeks if things haven't changed as that's what they normally seem to say! I know it sounds odd but I'd feel better if I got diagnosed with something!!
I can totally understand that. I hope you get answers soon.

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