Crohn's Disease Forum » Your Story » Undiagnosed hell


04-04-2012, 12:08 PM   #1
Dazzafarr
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Undiagnosed hell

I haven't been diagnosed with crohns as yet although, I may be looking at something like that for my stomach...
Bone density - low - -1.4 - lowest reading - -2.0
Stomach issues for 20 years...
Constant- fissures, urinal issues.
Rashes when eating some foods.
Mass fatigue
Bloating etc.
Stiff and achy joints.
anxiety
Diagnosed - spondylolthesis lumbar sacral junction.
Gene positive - HLA-B27, Pretty sure I got positive for B28 too....
Red/sore eyes.
Seems lactose intolerant... Not gonna try test that out again....
Diagnosis positive for eosophigitis or however it spelt.
Had a forming peptic ulcer... No idea now days...
Foods that set it off
-
Alcohol
Sauces
Wheat
Garlic
Camomile tea / kept me up all night....
Chocolate
I miss biscuits so much- biscuits
Rice
Soft drinks
Eh, the list goes on....
Anyone have an idea what the hell is wrong with me?
04-04-2012, 12:18 PM   #2
Dazzafarr
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Been going to doctors for 2 years. Made over 100 appointments in a year.
Been sick for 20 years starting as gas and bloating turning into fissures, osteopenia etc...
Please help if this sounds like crohns...
Been diagnosed with depression, anxiety many times until finally got a bone density test...
All of a sudden doctors believed me.....
Worst experience of my life... At 27... This is crap
04-04-2012, 03:01 PM   #3
David
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Hi there and welcome to the forum I'm so sorry you've been having trouble You poor thing.

1. Have you had a colonoscopy and/or endoscopy done lately? If so, what were the results? Any other tests?

2. Have you had your vitamin D levels tested?

We also have an undiagnosed club you may want to check out. Please keep us updated.
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04-04-2012, 03:01 PM   #4
glum chump
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Hi Dazzafarr

That's a lot of stuff you're dealing with and without many answers. Some of your issues definitely run parallel to IBD issues: fissures, eye troubles, bloating, joint issues, fatigue, and so on.

You mentioned that you tested positive for HLA-B27. If I'm not mistaken that's a marker for people with diagnosis of Ankylosying Spondilitis? If that's the case, then AS and Crohn's/IBD share a connection to one another. There are some threads on the forum by people who have IBD and AS..you might want to do a search for it, or start a new thread to get some feedback. You might also want to head over to the Undiagnosed Club and read through some of the threads there.

Are you taking calcium and Vitamin D for bone density? Have your doctors considered doing a colonoscopy to see what might be happening around stomach/digestive issues?

Welcome to the forum, and here's hoping that some of the crap begins to turn around.

Cheers,

Kismet
04-04-2012, 04:49 PM   #5
Dazzafarr
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Thank you both for replying,
I am taking calcium and vit d supplements.
The GP diagnosed me with AS but the specialist thinks different
After having anxiety last night my girlfriend thinks its all in my head...
Its so annoying that people don't believe you...
Why would you go through hundreds of tests for fun or for no reason..
I will deffinantly look at the undiagnosed group.
Thank you once again for replying
04-04-2012, 05:22 PM   #6
archie
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Hang in there no wonder you feel anxious with all that going on at 27!!!! It would be difficult to tell if it's IBD from your symptoms but it does look like some form of autoimmune or hypersensitivity problem. What tummy / bowel issues do you have? Are u underweight or suffered from unintentional weight loss recently? Any increase in inflammTory markers etc as David suggests you need some scopes done and other investigations to get to the bottom of it. I hope you get some answers soon
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04-15-2012, 11:13 AM   #7
Dazzafarr
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I have had unriny discomfort for over 3 years which after doing quite a lot of research
i believe i have a fistula to my bladder and it may also be towards my scrotum....
i have had two colonoscopys/endoscopys.
although i havent had a pillcam.
never thought to check the highest diagnosed area for crohns = ileum
i almost have every marker possible although im not using the markers as a sign or
a diagnosis.
im just sick of being sick.... im off work now and i have a mortgage....
dont dont want medication i just want the fistula fixed...
i really dont have any quality of life with it.
the stomach pain i can deal with, the arthritis or AS i can even deal wtih.
the fact i was 90 kilos and now im 75 i have even dealt with.
i went to a gastro the other day who was a complete ass.
he was sceptical because i saw one of the best gastro's in Australia.
when other gasto's see his results they go all critical and its as if they try to prove his
diagnosis wrong and that theres nothing wrong with me.
i havent drank alcohol in a long time... i currently smoke " i know its bad but if i didnt have it i would be severly depressed"
i eat gluten free food as it helps for some reason.
although, gluten free soy sauce almost knocks me out...
and some other gluten free food still hurts...
my average sleep time is 1-2:00am as even if i go to bed at 11:00pm i am up dealing with the urinating issue.
27 and havent had any quality of life since 24. how many more years will i live this way
04-15-2012, 11:37 AM   #8
Dazzafarr
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Sorry. Didn't reply to stomach symptoms.
My stomach pain believe it or not is my most tolerable.
I get stomach pain in the lower left and right at times.
I get pains in my belly button... Work that one out..
On a gluten free diet I have supressed a lot of the stomach symtoms
But I still get flare ups.
I range from diarrhea to constipation.
Stools majority of time are yellowish.
Sometimes real dark. Almost black.
Get cramping which can sometimes get really painful.
Some of my toe nails are weird.
I have one toenail that sort of grow on top on the nail.
Another looks like fungle and another has white spots on it.
I am on calicum sups and vit D sups.
Sometimes I feel like I'm never going to get diagnosed
04-15-2012, 11:46 AM   #9
Dazzafarr
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Oh, im also taking colostrum..
I know it's prob not a cure or whatever they
Make it out to be but it does have some good stuff
In it.
Anyway, I'm tired and I should try get some sleep even
Though I prob won't get sleep.
Thank you all for your replys
04-15-2012, 01:01 PM   #10
Astra
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Dazzafar have you had your prostate checked? I know you seem young to be having old men's problems but didn't you post somewhere about feeling that you're blocked when having a wee?
http://www.1in4men.com/urinary-problems.aspx

another consideration
http://en.wikipedia.org/wiki/Interstitial_cystitis

or

http://en.wikipedia.org/wiki/Granulomatous_prostatitis
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04-15-2012, 08:13 PM   #11
Dazzafarr
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Doctors refuse to check prostate cause I'm so young.
Basically. I will request again to have it checked tomorrow
04-16-2012, 12:55 AM   #12
tots
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Colostrum?
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04-16-2012, 01:33 AM   #13
Leebie3
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colostrum is mothers first milk.. full of nutrients and antibodies :-)
04-16-2012, 01:38 AM   #14
Dazzafarr
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Colostrum =
Would of been better to google it but basically, colostrum contains the substance in which mothers first produce in their milk.
Contains a lot of qualities you won't find in foods..
I don't believe that it's a cure for anything...
I'm simply taking it because it's natural and I don't see a loss in natural.
04-16-2012, 01:48 AM   #15
tots
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Leebie3- thank you for the answer thats what I thought. Just wanted to make sure I was on the same page. Just havent heard of it in any other form! Who knew?

Lauren
04-16-2012, 01:51 AM   #16
Leebie3
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oh it's incredible stuff :-) has had really good reviews.. only problem is that comes from cows so isn't really suitable for us.. as much as cows milk isn't so good for our bodies however they have recently started using goat milk which I have heard (I haven't investigated that) it is closer to the composition of human milk.
04-16-2012, 01:56 AM   #17
tots
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Even for those who are lactose intolerant?


Lauren
04-16-2012, 01:58 AM   #18
Leebie3
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I'm not sure tots.. sorry. I haven't investigated. I do know that a lot of babies who appear to be lactose intolerant are trialled on goats milk before soy formulas.
04-16-2012, 02:01 AM   #19
Leebie3
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http://www.colostrumnz.com/colostrum_002.htm
04-16-2012, 02:02 AM   #20
Leebie3
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excerpt:

Does bovine colostrum have any side effects?
Colostrum used by Colostrum health is a high-protein, low fat and reduced lactose dairy product, as a result lactose-intolerant individuals generally experience no problems and some even report that colostrum helps with their condition. If you can drink milk without any problem then you can probably take colostrum. Some individuals may experience a mild gastrointestinal distress or a bloated feeling, which can be avoided by lowering the dose. If this reaction continues however then it is best to discontinue the colostrum treatment. However, as with all health supplements, it is always advisable to consult with your doctor in the first instance. Colostrum used naturally contains low levels of lactose and during processing these are reduced further.
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