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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Its been a while....


10-05-2012, 12:29 PM   #1
MrRoper
 
Join Date: May 2012
Location: United Kingdom
Its been a while....

So after posting a few questions about testing etc, I sort of went off the radar and didn't come back to this site for a while. Things have been a bit "messed up" with life, and I forgot to update on where I was and I have been fighting my worsening symptoms which has left me exhausted and beaten.

So, after David kindly gave me some advice regarding MRI(E) testing and pill cameras etc and realising that my life was going downhill quickly I started to get a bit more proactive with my approach to the doctors. The end result being I saw a Gastro doc in July and quickly had an MRE and calprotectin test done. These have both been negative which is good but I still struggle daily with my symptoms.

Luckily the Doctor seems to be on my side and agrees that something is up.. I suppose when your fingers start clubbing and you can only manage about 6 hours awake its hard not to!

I have a Colonoscopy and Endoscopy organised for Tuesday. I have no idea where to go from there if that i snegative, but hopefully my life will be back on track soon.

I am on antidepressants now as i only seem to get about 4 hours sleep, and I have had to start working from home as the early starts are killing me.. I am physically destroyed by about 3pm and knew it was affecting my work. Luckily they have been amazing about it all so far!

well, I just wanted to post an update and hoped that writing this would help in some cathartic way!
10-05-2012, 02:02 PM   #2
David
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Join Date: Feb 2006
Location: Naples, Florida
Wow, I'm sorry you're still struggling so much, that's tough At least the GI knows something is going on and is working with you. I hope they get it figured out soon!
10-05-2012, 02:08 PM   #3
MrRoper
 
Join Date: May 2012
Location: United Kingdom
Me too David! Its becoming all a bit silly now, I saw a rheumatologist today because of my finger clubbing and pain i have in the fingertips and even he said I am a mystery. He mentioned that I have a lot of overlapping symptoms that could point to numerous diseases but none that are specific enough.

I just hope this new GI doesnt give up, the worrying thing is im now starting to look into diseases that are very rare and unlikely like whipples disease etc, and then stressing that that`s what I have..this then starts the whole vicious circle of stressing and trying to find out whats wrong with me.

I`m sick of looking up conditions on the internet, but how do you put something to the back of your mind when you are sick every day?!?!
10-05-2012, 02:12 PM   #4
dannysmom
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Join Date: Oct 2010
Location: NY

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Sorry you are suffering so much and I hope you get answers. It is your finger nail that is clubbing? or your whole finger?
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
10-05-2012, 02:18 PM   #5
MrRoper
 
Join Date: May 2012
Location: United Kingdom
Its the tips of my fingers, the ends have started to bulge, and the nails are curving downwards, it started about 2 years ago and saw a General medicine specialist about it who shunned it off as nothing but I knew my fingers had changed. Thankfully the new GI agrees that there is clubbing, which all falls in line with some inflammatory process going on :S
10-06-2012, 07:49 AM   #6
dannysmom
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Thanks for th reply. I know doctors looked for clubbing on my son's hands when we was given a Cystic Fibrosis diagnosis. I just read that is is associated with many other illnesses too, include Crohn's. Fatigue is my son's worse symptom ... for 3 years he could not do much (even school). I hope you find something that helps you!
10-10-2012, 04:53 AM   #7
MrRoper
 
Join Date: May 2012
Location: United Kingdom
Just an update for you guys,

I had my Colonoscopy and Endoscopy yesterday, and everything looked fine. They did take biopsies so something may be found there but i suppose its good news that nothing could be seen.

The strange thing is all my symptoms dissapeared while doing the prep, and i can now feel them coming back as I reintroduce food to my system. It seems this is certainly something to do with my digestion then!?
10-10-2012, 09:56 AM   #8
David
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Join Date: Feb 2006
Location: Naples, Florida
Thanks for the update

There's still plenty that can be found via biopsy.

I'm not sure what your symptoms disappearing while prepping means. Did you tell your doctor and what did they say if so?
10-10-2012, 04:22 PM   #9
dannysmom
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Have you had your pancreatic enzyme levels checked? If these are low then you would also have GI symptoms and malabsorption issues. They are typcially done via a stool test.

Liquid diets do help some patients ... maybe you can follow that for a while to see if it helps.
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