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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Quick few questions, if you have the time?


11-14-2012, 11:06 AM   #1
UKMatt
 
Join Date: Nov 2012
Location: Bristol, United Kingdom
Quick few questions, if you have the time?

Hi All,

I have a few questions that I would like a answer to, my situation:

Undgianosed
Age: 40 male
Hostpital: 4 times in past 20years (Various countries so no DX)
This last year, I discovered that none of the below is normal:
a) Intense waves of stomach pain for 30secs, then fine for 5mins and then pain again.
b) Liquid poo
c) Extreme tiredness usually in the afternoon, but anytime after food
d) Constantly feeling sick, but not actually throwing up

The pain got so bad 3 months ago (option a above), i went to ER again, they took one look at me admitted me and prepared me for surgery. They filled me full of steriods and that took the swelling down and I was allowed to go home after a week and given Prednislone (40mg).

They did tests (blood), nothing came back as Crohn's, they did a scan (not MRI the other one) and that showed a bit of swelling, but still not enough to give me a DX. So they wont give me any potentially dangerous drugs.

The main question: Its been 3 months since hospital I am weened off the Pred (did it right and slowly) for 2 weeks. Now my legs ache like hell, the stomach pains are starting again, I am constantly feeling sick and I wiped out by the afternoon. I have Colonoscopy in 3 weeks, a MRI in 2. Shall I just live with it because there is better chance of a DX while its bad or do something about it?

Sorry for length, I guess I am really asking is what I desribe sound like Crohn's to you guys? I am rapidly loosing faith in Doctors "ummm errrr" ing and just want to feel good again. btw Predisolone made me feel great, till the side effects kicked in.

Cheers/Thanks

Matt
PS Never told anyone but doctor all this, I am oddly nervous
11-14-2012, 12:39 PM   #2
muppet
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Location: Plainville, Connecticut
This definitely has shades of Ulcerative Colitis or Crohn's, but jumping the gun on diagnosis can be bad, too.

I would definitely tell the doc you have symptoms, and get his advice. Allowing a flare won't necessarily aid diagnosis and there's no reason to suffer. If you allow it to flare and then do prep you may even get very sick (though most preps are pretty low impact these days, in terms of bowel inflammation.)
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11-14-2012, 02:18 PM   #3
mario
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It sounds like crohns or one of the other IBD s to me. Trouble is they are tricky to diagnose. I was finally diagnosed on the operating table. Just keep pestering, they can't um and ah forever. Sooner you get a firm diagnosis sooner you'll get proper treatment. I think you should go back to A&e. 3 weeks is a long time to be in agony. Been there, done that!!!! I was so ill by the time i got to hospital, i cant even remember being taken there! But once admitted (via A & E ) all testing was fast tracked. Failing that go to your doc and ask for something to take in the interim. Take care. Keep us posted.
11-14-2012, 02:32 PM   #4
ForeverCrohns
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This sounds like Crohn's But sometimes Prednisone hides it which can make the diagnosis harder

Hope you feel better
11-16-2012, 07:00 AM   #5
UKMatt
 
Join Date: Nov 2012
Location: Bristol, United Kingdom
Things are not getting any worse and the edge has tailed off enough to be liveable with, so I am going to take a bit of everyones advice and I will go see the Doc if things get worse.

Gotta say thanks to those that read and espically those that responded. I am not very good at forums and not used to talking about this stuff at all. Whatever it turns out to be for me, you guys have made me feel a bit better about it all.
11-16-2012, 08:01 AM   #6
dannysmom
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Hi Matt,
Tapering off 40mg in 2 weeks may have been a bit too fast for your adrenals to catch up ... and the pred was helping your inflammation, so that could be coming back too. I am glad you are feeling a little better. Good luck with the scopes and I hope you get answers.
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11-16-2012, 08:20 AM   #7
muppet
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I agree that 40mg to 0mg sounds like a very aggressive wean, but I think Matt meant that he has been off for two weeks, not that he weaned in two weeks.

Still, Matt, maybe you weaned too fast. What was your schedule?
11-16-2012, 11:18 AM   #8
StaceyQ
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take yourself to a&E they will get things done alot faster, i know how it feels to suffer in pain with no diagnoisis, did it for 8 monhs and it was hell. Make them listen to you.

x
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