Crohn's Disease Forum » Your Story » Suspected/Un-diagnosed crohn's :(-- Need advice

08-27-2015, 02:11 PM   #1
Ladybugsgg's Avatar
Suspected/Un-diagnosed crohn's :(-- Need advice

Hi everyone,

I'm feeling a little helpless and stressed and really need to hear others stories/ get some advice. I've had issues with my digestion in segments throughout my life and only now at 24 have been told that I most likely have some form of IBD/ most likely Crohns.

At 9 Y/O my body went crazy on me (running to the bathroom, vomiting, itchy, fatigue, terrible pain before during and after going to the bathroom, dizzy from dehydration and super stressed from it all) and was assumed to be food allergies. Nothing seemed to ease the issues though until one day it just stopped.

At 11 Y/O my body did the same but this time only for a couple of weeks so I just missed a little bit of school and got back to it- not much investigating- was an assumed tummy flue.

At 13 Y/O during my first year of high-school it came back. I was experiencing some pretty severe bullying at the time so my family actually thought I was just faking to not face it all. I started vomiting every morning though and almost passing out from the pain so we finally went and revisited it all with my doctor. He (after a bunch of herbal remedies) sent me to get an Upper GI X-ray. I was told I had IBS and just told to take IBS support and a comment of 'You'll be fine just don't worry it's all in your head' :/
It didn't stop for about at least 6 months, but once I got told I had IBS that was it.
Again, after about six months (and dropping out of high-school) it went away.

It didn't come back fully (meaning that I only had a day or two a month like that) until last year at the age of 23.

The last year of my life has just been hell.
All these symptoms came back with a vengeance I also was experiencing some scary pains in the upper right hand quadrant and after months of being told by doctors to drink peppermint tea and forget about it-
I went into the emergency room for the third time and they discovered a gallstone blocking a bile duct. I was told that was my problem and they removed my gallbladder.

Since then I have been so unwell. I've had to take so much time off of work, I feel like all my relationships are straining and I'm so miserable.
I've finally after almost a year found a doctor who's sent me through every test possible and has told me that he believes I have crohn's. On top of all the issues I've had before (running to the bathroom, vomiting, itchy, fatigue, terrible pain before during and after going to the bathroom, dizzy from dehydration, Severe bloating and super stressed from it all) I've also just found out that the dark colours in my toilet was dried blood and that the red blood i've been passing is possibly due to either hernias or ulcers?

I've had to drop down to casual at my heavy duty job and go onto goverment support while I wait for answers (lucky to be able to get a little help) because I can hardly do anything with myself.
My liver function has been strange ever since the surgery but still received little to no help since getting my surgery in January this year until this past month. I just had a surgeon confirm that I have fatty liver disease but that I shouldn't be having these issues from getting my GB removed.

I have my first Endoscopy and Colonoscopy in a week and I'm a big mixture of emotions. I'm so ready to be told I have something and be able to finally get proper help but I'm strangely so afraid of being told they can't find anything? Is this normal? I'm just so exhausted and want to start mending.

Please any advice will be so warmly welcomed <3
Is anyone's story similar?
08-27-2015, 04:20 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.

Sorry you've had to deal with so much for so long.
I think it's perfectly normal to have mixed emotions about the upcoming scopes.

I hope you get some answers. Sending you my support.
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08-29-2015, 03:59 AM   #3
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Caitlin84's Avatar
Join Date: Jun 2015
Location: Milwaukie, Oregon

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I think its very normal to want a diagnosis. The unknown is scary and hard to treat. Hopefully the endoscopy and colonoscopy will give you some answers. Good luck, hang in there and keep us posted.
08-30-2015, 04:42 PM   #4
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Welcome to the community. I'm glad you're getting scoped soon. Hopefully they'll be able to tell what's going on from them and get you on a proper treatment regimen as you DESERVE to feel well again.

Please keep us updated!
It's good to be back
08-31-2015, 05:55 AM   #5
Join Date: Aug 2015
Location: Queensland, Australia
I feel your pain
I really hope you get answer's as not being diagnosed properly is so so hard

I hope you get a answer and then can start a plan of attack but while your waiting I would try eating just meat and veg only cut out all processed food, sugars and dairy if you can.
08-31-2015, 05:57 AM   #6
Join Date: Aug 2015
Location: Queensland, Australia
Except have yougurt but only natural.
It will keep good bacteria in your gut while you cut out all the crap from other food
08-31-2015, 07:40 AM   #7
Ladybugsgg's Avatar
Thanks so much for all the kinds words and support everyone. I'm getting my scopes done in about 9 hours. I vomiting and passing loose bloody stool almost all day yesterday and almost went into emergency from the pain I can't wait until tomorrow morning, I'm counting down the hours like Christmas. Does anyone know how long it usually takes to get any sort of results from Colonoscopy and Gastroscopys? Do they ever tell you anything on the day? Anything at all?
08-31-2015, 01:09 PM   #8
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Sometimes the GI will give you an assessment based upon what they could see but really, it depends on the GI. As for the biopsy results, it would be best to ask the GI or nurse what the typical turnaround time is for your area.

Good luck!

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