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Crohn's Disease Forum » Your Story » Hello! Yet to be diagnosed newbie...


05-10-2014, 10:55 AM   #1
LewisS
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Hello! Yet to be diagnosed newbie...

Hey!

So on Monday I finally go for my blood tests to see what's going on in my gut! Not sure if it's IBD just yet, but from my symptoms I and even my doctor think it's looking that way.

My main symptoms include; the wonderful diarrhea, stomach cramps, bleeding during a BM, bloating and gas - which are all associated with IBS too. Other symptoms are mucus/blood (sometimes with a BM and other times on its own), anal skin tags and hemorrhoids. There's a few more like night sweats, but those branch off others.

After 2 years of ignoring it and suffering in silence, I'm glad that I'm going to finally get some answers. When I have 'good days' I tend to con myself into thinking I'm okay and that I'm wasting medical professionals time, but those 'good days' are few and far between and I know whatever is happening surely can't be right.

Apologies if my post is a little all over the place - not concentrating well today at all. Really hope I can meet/talk to others on here and get some responses. The other IBD forums I've joined don't seem to be very active.

Lewis

Last edited by LewisS; 05-10-2014 at 11:20 AM.
05-10-2014, 11:36 AM   #2
nogutsnoglory
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Welcome to the forum. I hope the tests shed some light on what's going on. Do you see a gastroenterologist? A regular internist is likely not good enough to determine what's wrong.
05-10-2014, 11:45 AM   #3
LewisS
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Welcome to the forum. I hope the tests shed some light on what's going on. Do you see a gastroenterologist? A regular internist is likely not good enough to determine what's wrong.
Thanks!

Not at the moment, my regular doctor is sending me for the blood tests and if they come back inconclusive, I assume he will refer me to a GI.

Here we have to go see what is called our GP (general practitioner) which refer us to specialists if they are unable to diagnose the issue. Not sure if that's the same as an internist because GPs are usually really old and well trained.

I really hope I can get my life back after this. He said I'm going to be having a lot of blood tests, but I have a hunch it will all come back normal.
05-10-2014, 11:54 AM   #4
nogutsnoglory
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Yeah its different here but before I was diagnosed my bloods and stool samples all came back normal. It was only when I saw a gastroenterologist and they did a colonoscopy that crohns was determined.
05-10-2014, 12:25 PM   #5
LewisS
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From what I've read, this seems to be the case for so many people. It's encouraging to hear you got the diagnosis in the end though.

My great uncle has recently been diagnosed with crohns and both my dad and sister have GI problems that they haven't addressed. Is IBD genetic at all?
05-10-2014, 12:32 PM   #6
nogutsnoglory
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Absolutely, they aren't very clear on what causes crohns but there is certainly a genetic component.
05-10-2014, 01:06 PM   #7
LewisS
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Absolutely, they aren't very clear on what causes crohns but there is certainly a genetic component.
Well, at least if I get a diagnosis I can possibly shed a light on their issues too. They are the type of people that refuse to go to a doctor. Well, my dad did, but was told to eat more fibre.

The doctor I had said those symptoms should never be ignored and not investigated.
05-10-2014, 01:53 PM   #8
steph_irish
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Hi LewisS
Welcome to the forum.
I was diagnosed last December via Colonoscopy. hope you get some answers soon X
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05-10-2014, 02:03 PM   #9
Daisy123
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I don't think a Dr would be able to diagnose just through blood tests. I went to a GI who diagnosed me after X-rays. My advice to you would be to choose a specialist hospital or centre when you are referred. In my experience it is a better than a GI at your local hospital.
05-10-2014, 02:15 PM   #10
LewisS
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I don't think a Dr would be able to diagnose just through blood tests. I went to a GI who diagnosed me after X-rays. My advice to you would be to choose a specialist hospital or centre when you are referred. In my experience it is a better than a GI at your local hospital.
Hopefully the bloods are just an initial measure. He did say it's a starting point. I'm such an inpatient person though, not knowing makes me obsess over it.

Off-topic, but I just wanted to add to my 'intro' that my symptoms are worse at night, when I lie down the pain just seems to kick in. Is this common in IBD sufferers?

Once I'm diagnosed, I hope I can help others and stop being the naggy newbie with 21 questions.
05-10-2014, 02:21 PM   #11
Daisy123
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I find the pain is worse at night as well. I think this is partly due to food being digested but also being sedentary. I am much better when I am active, although when I am unwell I am not that active, so catch twenty two.
05-11-2014, 12:31 AM   #12
Everly
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Welcome to the forum!

Just last year I was in the same position, having to wait for a diagnosis. Although my symptoms weren't typical for IBD. I had many, many tests before I was diagnosed with Crohn's disease. I agree waiting is very difficult. And doctors kept telling me it was all in my head- sometimes I wondered if it was and I was wasting their time as well.

Ultimately the best way to diagnose IBD is through a colonoscopy with biopsies from what I've learned. My blood tests are almost always normal when I'm in a flare, the only thing odd is my sed rate is always elevated. But it's different for everyone

My crohns symptoms are always worse at night or early in the morning. My stomach always seems to act up around 11 pm. Its strange. It's like my intestines are on a clock! Lol

But anyways, I really hope you find the answers you need soon and are able to get a solid diagnosis! Just don't give up, as disheartening as it can be. We're all here to support you whenever you need it!
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05-11-2014, 02:07 AM   #13
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Hey Lewis,

Welcome Your story and symptoms sound extremely similar to mine... I also did not want to bother anyone so it was probably about 2 years before I went to the doctors about it. Stool samples all came back normal - it was the blood tests that showed increased inflammatory markers and lowish iron (although this wasn't very conclusive being a teenage girl). I also had hair falling out and had lost about 10 kilos... my mum knew it was something serious and actually suspected Crohn's because she's a nurse. My GP agreed and I was having a colonoscopy, MRIs and barium follow through within a week and yup I had Crohn's!

That was a year and a half ago... Since then I've been feeling much better. I hope you get a diagnosis soon so you can also start feeling better
05-16-2014, 08:35 AM   #14
LewisS
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Wasn't sure whether to make a new thread or not, so I just though I'd post my little update here.

Got my results back today. I'm anemic and have raised inflammatory markers (and something to do with proteins). Not coeliac and my liver, kidneys etc. are all fine. Given some medication for my anemia and referred for an ultrasound scan and a consultation with a proper GI. Wasn't really expecting a result like this at all, thought I'd get nothing back...
05-16-2014, 12:09 PM   #15
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I'm glad you got some answers!
I'm due for a colonoscopy tomorrow, after 6 years I'm hoping for my answers too.
05-16-2014, 01:34 PM   #16
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I've found that I'm worse in the morning and always need to give myself extra time so I can lie in bed and let the pain or discomfort subside. Although a lot of friends I've met with Crohn's have symptoms that vary in different ways, I don't think there is much crossover with what is common among IBD patients.
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05-16-2014, 01:53 PM   #17
nogutsnoglory
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Why an ultrasound for anemia?
05-16-2014, 01:54 PM   #18
LewisS
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Why an ultrasound for anemia?
The ultrasound is for the inflammation and really to just find out why I'm in such excruciating pain. The anemia is secondary to it all really.

Last edited by LewisS; 05-16-2014 at 02:56 PM.
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