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04-03-2016, 07:55 AM   #1
bebe1
 
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Undiagnosed

Hello everyone!

I'm new here. My name is Bebe and I'm 20. I wanted to share my experiences so far, vent, and get some advice and support. This forum has been a huge comfort to me during (what I think was) a flare up. Just a warning, this post is TMI!

First of all I should mention that I am an Ashkenazi Jew. I have had symptoms of Crohn's since early puberty. I mistook the extreme abdominal pain as something that everyone experienced throughout their menstrual cycles. It was only when I got my Implanon put in 5 years later that I started thinking that the pain was abnormal. I have had chronic pain in my back and hips since I was 17, so I don't usually feel pain unless it's extreme. The pain is and has been so extreme that I would lie on the floor in a ball for hours until the pain would lessen and I could stand up and continue bare the pain. I had a routine blood test about 5 months ago and it showed that my inflammation levels were very high and abnormal. The blood test also showed that I was borderline anaemic, and that I had a severe vitamin D deficiency. A GP (a different GP to my regular GP) told me that she thought that I had IBS.

Over the last 8 months, I have had diarrhoea 6 - 7 times a day even if I don't eat anything. I have put on a significant amount of weight despite this. I only eat 1 to 2 small meals a day to avoid going to the bathroom too often, but it doesn't really make any difference. The diarrhoea is usually mainly mucus and occasionally a dark, dark black. Since early puberty I have always felt more tired than other people - I never had enough energy to do things that other people would usually do. Over the last few months I have been incredibly fatigued, more so that I usually am. I would wake up after a 12 hour sleep feeling like I hadn't slept at all. I found this really scary because my mother had chronic fatigue when she was a little bit younger than me. Then about 2 months ago all of my lymph nodes became inflamed. When I say all of my lymph nodes, I mean ALL of my lymph nodes. You name it, it's inflamed. The lymph nodes surrounding my stomach are the most uncomfortable. It kind of feels like when you swallow a chunk of cucumber that is too big, and it scratches your oesophagus and stomach. Then the most extreme lower abdominal pain I had ever felt in my life started. It kind of happened all of a sudden (this pain was like the pain I had felt every few days but more extreme). My lower abdomen felt inflamed and swollen. It felt like there was a pufferfish pushing into my guts. The pain was sharp and continual and would not go away for at least two weeks. The diarrhoea was the same, and my body felt like crap. I felt like vomiting, but the nausea I was feeling wasn't coming from my stomach. The pain was located to the centre of my abdomen and on the left and right lower parts. It was awful. Absolutely awful. There are a lot more symptoms that I'm having, but this post is already pretty long, so I'm not going to talk about them here.

I have been to my GP in Sydney and she had a feel of my lymph nodes (that are still all up). I told her about all of my symptoms and everything that is/has been happening, and she said that she thinks that Crohn's is very likely. I have done two blood tests, a helicobacter pylori test, and a faecal calprotein test. None of the results have come back yet. I have also been referred to a gastroenterologist to get an endoscopy and a colonoscopy.

I am scared that it is probably Crohn's. But I am also more scared that if it's not Crohn's then I have no name for what is happening to me.

Thank you for listening to me

Last edited by bebe1; 04-03-2016 at 09:39 AM.
04-03-2016, 09:00 AM   #2
smt
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May I know the exact values of the inflammatory markers that were tested and the exact value of Hb and other blood parameters? Also, what are the two blood tests that would be performed?

Black stools as a result of blood loss in the upper GI tract is known as melena, and is tarry and sticky. Is your's dark brown or pitch black? If yes, is it tarry and sticky?
04-03-2016, 09:34 AM   #3
bebe1
 
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May I know the exact values of the inflammatory markers that were tested and the exact value of Hb and other blood parameters? Also, what are the two blood tests that would be performed?

Black stools as a result of blood loss in the upper GI tract is known as melena, and is tarry and sticky. Is your's dark brown or pitch black? If yes, is it tarry and sticky?
I'm not sure what the exact parameters are. I tried looking for the physical copy of my blood test results, but I couldn't find them. I'll let you know what the new tests come back with. The doctor told me that my results were extremely high and abnormal. At the time I just thought that it was related to the chronic pain I have in my back and hips. I know that I was .01 away from being anaemic, but that didn't concern my doctor for some reason? But again, I'm not sure what the exact number was.

The stools are black, and look tarry and mucus-y. I only found out from my doctor the last time that I went (the same time that I was given a referral to the gastroenterologist and to get a blood test) that black coloured stools are a sign of bleeding.
04-03-2016, 09:40 AM   #4
smt
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Hang on here. Wishing you the best.
04-03-2016, 09:43 AM   #5
bebe1
 
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Hang on here. Wishing you the best.
Thank you
04-03-2016, 12:53 PM   #6
ronroush7
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I am sorry for all you are going through. Please keep us updated.
04-04-2016, 03:15 AM   #7
bebe1
 
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I am sorry for all you are going through. Please keep us updated.
Will do! Thank you for your support!
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