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New and Confused

Hi Everyone,
I just wanted to send a quick 'hello'. I've been reading these forums on and off over the past few weeks and finally decided that maybe I should join.

I currently am undiagnosed. Waiting for my gastroscopy/colonscopy on the 7th of June.

A bit about me. Im a 33 year old female. Generally healthy. Possibly been having these issues a bit longer than I realize but latley its just gotten worse.

I have only had blood tests done in the ER. I dont know what they all tested me for except for my thyroid and to see if I was pregnant. I know those 2 came back negative but there were more tests we were waiting on.
In the ER they basically just said that my intestines were indeed swollen, they noticed I was thin and referred me to a GI.

I met with the GI but only very quickly. It was about a month later and he just wanted to see if I was still having the same issues and possibly asked a few additional questions. Went and checked the blood work from the ER a month before. He came back with the appointment for the colonoscopy and gastroscopy and that was it. Asked if my blood was ok, he said something showed up but nothing too signifigant. OK then.

My symptoms are mainly constant diarrhea (hardley ever constipated). Im going anywhere from 3-6x a day but am only eating one very small meal a day. I only eat at night right now because its working for me. I eat, depending on what I eat depends on how I feel afterwards. I can feel fine to being bloated and uncomfortable to being in severe pain. Most times my stomach makes extremly loud digestion sounds that my hubby can hear over the TV lol.

For the most part I can get to sleep and stay asleep. Sometimes it does keep me up all night. The rumbling and gurgling keep me up. My mornings are the worse. I can wake up either feeling fine and then within seconds be running to the bathroom. Other times it wakes me up and makes me run. When this is happening I have anything from dull achy pains in my abdomen to extreme pain that almost makes me want to cry.

I get chills, break out in sweats, my hands get tingly and sometimes my legs do. Sometimes I just go alot and dont feel horrible other times I seriously feel like im dying. Once its all done and I feel like I have got rid of everything I ate the night before I usually feel better. The worst is I may feel a bit of that dull achyness afterwards.

Ive lost weight. 5'7 down to 106lbs and keep falling. My hair has been falling out badly for months. I bought a wig and wear the wig when i leave my house its really that bad. I itch, no rashes really but some days I itch the crap outta my shins, ankles and right side of ribs. Itching causes bruises. I have a white coating on my tongue. Thought it was possible thrush. Dentist thinks its hairy tongue. I can scrape the crap outta my tongue and get rid of it, my tongue turns raw and by the next day its back!

Eyes started going bad last summer (at least thats when I noticed) Extreme sensitivity to sunlight and brightness. Went to the eye dr and he believes its dry eyes and UV damage.

No one in my family has any issues like this. They are suspecting crohns but I don't know.

Would love to hear some other peoples stories about how they felt and what their symptoms were before they got a diagnosis to see if maybe we are on the right path or not.

Thanks for listening to yet another newbie story :)
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome :) I'm so sorry to hear of your troubles :( My heart goes out to you as I know how difficult this can be, especially when you don't have a diagnosis.

I do indeed think you're on the right path. Having a colonoscopy is definitely the correct next step. Based upon what you said, I would also strongly suggest having them test your vitamin b12 levels, vitamin D levels, and every other vitamin/mineral level they're willing to test as I'll bet money that you're deficient which is leading to some of your symptoms you describe.

I know June 7th feels like a long way away but I think you're going to have a diagnosis soon. We're here for you in the meantime and thereafter. Let us know how we can help.

*hugs*
 
Thx for the kind words David.
It does feel like a long time away especially considering I have already waited for a few weeks.
Im still confused though as to why the GI decided to go right to the colonoscopy/gastroscopy without doing any of the other tests. Maybe im lucky and got a good GI? or maybe he knows something I dont? I dont know.
I will definatly ask my GI for the vitamin/mineral levels. But then again, he didnt feel like sharing what results came out the first time around. I know they took 6 vials of blood and thats it.
I did question whether I was dehydrated or malnourished. None of them seem to be overly concerned about my weight though.
Im guessing if I did have it that its obviously a very mild case and nothing close to what you guys are experiencing.
 

David

Co-Founder
Location
Naples, Florida
He knows that you possibly have some form of IBD and that colonoscopy is the next logical step.

And I'd request copies of all your results.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and :welcome: to the forum. Sorry to hear that you are feeling so poorly at the mo. The colonoscopy can be such a good test to show what is happening inside and any biopsies taken can lead to a definitive diagnosis. Wishing you all the best with this and pls keep us updated on how you are doing.

AB
xx
 
Thanks Angrybird.
I wiill definatly keep you guys posted.
Im starting to freak out. I was curious and decided to call the hospital where im getting the gastroscopy/colonoscopy and asked whether I would be fully sedated or partially sedated. Of course they told me only partially sedated.
I don't know but I just simply don't think I will be able to do the gastroscopy if im partially awake.
Kinda pisses me off that they do that to people. I will refuse that test because I do have really bad gag reflexes. Bad enough that I gag if I brush my teeth and can even gag while talking.
But im not worried. I never expected the gastroscopy anyways. My problems dont really seem to be in the upper part. It's all lower issues. So colonoscopy will be for sure done next week but if they wont knock me out for the gastroscopy I will refuse it :(
 
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