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01-31-2012, 12:31 AM   #1
juberdoo
New Member
 
Join Date: Jan 2012
Location: British Columbia
My very long story

Hi Everyone,
I'm new here and thought I'd jump right in and join the undiagnosed club!

I've been sick for 10 months. It started with looser than normal stools, then abdominal pain that felt like a "lump" in my lower abdomen. My lower belly swells almost constantly. I have bouts of watery diarrhea, sometimes stabbing lower right side pains, major menstrual pains and irregularity, lower back pain, my hair seems to be coming out in clumps, a dry itchy scalp and dry patches of skin on my face. I've lost 20 pounds.

Last July I had a colonoscopy that came back completely clear, then a barium swallow with small bowel follow (clear), numerous ultrasounds (clear except liver cyst and kidney hemangiomas), a CT scan (showed a very slightly distended appendix, which apparently is nothing)... and then I kindof gave up. Unfortunately, my symptoms didn't.

From the beginning my doc felt that it was Crohn's... infact he still feels that we'll eventually find Crohn's. Crohn's it may be, but in the mean time I not receiving any treatment and pretty uncomfortable.

Next steps... I'm scheduled for a laproscopy to look for endometriosis mid February. The Gynecological didn't think it was endo because I don't experience pain during sex, but said he'd check anyways.

I've also seen a rather neat private doctor who specializes in immune diseases. He's working with me to order tests for Addison's Disease and Lyme Disease.

I've come to the conclusion that I have "something" and that whatever it is, it's not going to be easy to deal with. I'm trying to cope with the idea that I may feel like this forever.

Any/all of this sound familiar to you others who are banging your heads against walls?! My poor health is consuming me. I want my life back.

Thanks for listening.

Michelle
01-31-2012, 08:23 AM   #2
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Hi ... This sounds very familiar! Welcome to our club!! Thanks for sharing your story and please keep us updated. I am curious what tests your doctor will order for Addison's. (I am not convinced this was investigated enough for my son.)
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
01-31-2012, 08:58 AM   #3
StarGirrrrl
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Join Date: Sep 2010
Location: UNITED KINGDOM

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Hi Michele, welcome to the Undiagnosed club and I am sorry you have had to join. I am glad you are having the op in February, hopefully that will give you some answers.

Many of us (myself included) could have written your last few lines

The thing to focus on is getting a diagnosis does mean being told something is wrong (which you know already but there is always that little bit of hope at the back of your mind it will turn out to be nothing), but it also means treatment, which means feeling better!
__________________
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
01-31-2012, 05:53 PM   #4
Cat-a-Tonic
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Join Date: May 2010
Location: Madison, Wisconsin

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Hi Michelle, welcome to the club. I hope that between the laprascopy and the Addison's & Lyme tests that your doctors can figure something out and get you some relief from your symptoms. I was tested for Addison's myself awhile back so feel free to ask any questions you have about that as well. Addison's can mimic Crohn's symptoms and responds to some of the same medications (specifically prednisone) so it's good to test for Addison's to either confirm it or rule it out.

Good luck with your laprascopy! I haven't had one of those myself but a few people on the forum have. That's another good test to have, as Crohn's can affect the entire thickness of the bowel wall, but is sometimes more visible on the outside of the intestines than the inside. It will of course also see endos and adhesions (loops of bowel sticking together) if they are present, so it's a good thing to have done for multiple reasons. Anyway, I'm rambling on as I am known to do. Good luck and welcome!
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