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06-28-2017, 02:17 PM   #1
Elvar99
 
Join Date: Jun 2017
Help.

Hi. New here. This is my first post here actually, the reason behind me posting is because I'm desperate, I'm at the brink of giving up. Here's my story.

At the end of last summer (2016) I went to the ER because of abdominal pain, having been a bit "sluggish" all summer. They sent me home, twice, despite me barely being able to walk due to pain. The third time I went to the ER a specialist checked me out and decided to rush me into surgery because of my appendix bursting. It then went on to infect my intestines and some part of them had to be removed. Ever since then I've gone to a lot of tests, mirroring, countless blood tests, and only a slight amount of inflammation was found. I've been given 3 types of medication and none of them work (some make it worse). My doctor was supposed to follow up on me monthly until I was 18 but ended up "neglecting me" and not checking on me except every 4-5 months. Even then, I told her I was feeling VERY sick, I had to drop out of college and am having a hard time even working 15-20% jobs because I constantly have abdominal pain, nausea, I'm sluggish, trouble with sleep, I am severely depressed, my stool is majority of the time painful and or runny. I am undiagnosed. Nothing can be done for me they said. My parents barely support me and wanna throw me out.

The only doctor that has listened and understood me is my personal doctor, we talked about applying for disability, but first she wants me to check out some other treatments, like a rehabilitation center(I think is the word?) where they help you get on your feet and back into work. Which makes no sense to me since they cant do anything to help with my illness(or whatever it is) i'm just a complete mess. The wait for a response from the center is 8-16 weeks and disability pension is 16-20 weeks wait. I'm broke and tired.

I feel like the system has failed me. I was sent home twice with a burst appendix, last time I had to do a test where they are supposed to sedate me, they screwed that up and I wasn't sedated even though I was screaming out of pain and being held down by 3 nurses... My own GI doctor "neglects" me (she's the only one in my area that takes in minors)

Any thoughts on my situation? Any advice? I am in desperate need for help and I can't get any.

More info:
17 years old turning 18 on July 1st
06-28-2017, 02:31 PM   #2
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
Oh sweetheart you have been through it & your so young to have put up with all this crap. I'm assuming you're in the USA? I'm in the UK but lived in FL for several years. Do you get Medicaid? Or are you using insurance? Going on through the ER is only going to get you treated for the "emergency"
That you go in for, then they'll palm you off (like they have done). You really need to find a good GI, but I know if you don't have insurance then that's hard. It would be good to know where you are in the world as if you're not in us then it may be different.
It certainly sounds like you need more diagnostic testing. I'm assuming they've run a fecal calprotectein stool test? MRI's? Colonoscopy etc? Bloods? If not then they certainly need to!
As for your family kicking you out that's horrendous. Do they know you're unwell? I would certainly look into applying for disability, at least get the ball rolling? Have you looked into local charities for help? Maybe via a church?
Let us know where in the world you are for clarity on what we can suggest...
06-28-2017, 02:51 PM   #3
Elvar99
 
Join Date: Jun 2017
I live in Iceland. Healthcare is relatively free here. As a minor the majority is free. Doctors appointment, anything really that doesn't cost much in materials is free.

I've done colonoscopy and mri's, a couple actually. I've had to go to the ER 3 times in the past 6 months due to extreme discomfort but all they do is give me an IV and a bit of pain meds and make me wait a couple of hours and then home.

My parents know I'm unwell but they don't really understand it. No one here really does except my best friend. I've had friends tell me I'm not sick because I don't look like it, my parents think I am just a loser and I should just go work! (Like I could last more than a week, and trust me I've tried)

No local charities here. Except salvation army but they only provide cheap clothing and mass every sunday.. I am atheist so I've got nothing to do with the church, and even then, all that is very different in Iceland. You cant really get much help from those places.
06-28-2017, 05:03 PM   #4
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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I am sorry for all you are going through. Sending support.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
06-29-2017, 03:03 AM   #5
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
I live in Iceland. Healthcare is relatively free here. As a minor the majority is free. Doctors appointment, anything really that doesn't cost much in materials is free.

I've done colonoscopy and mri's, a couple actually. I've had to go to the ER 3 times in the past 6 months due to extreme discomfort but all they do is give me an IV and a bit of pain meds and make me wait a couple of hours and then home.

My parents know I'm unwell but they don't really understand it. No one here really does except my best friend. I've had friends tell me I'm not sick because I don't look like it, my parents think I am just a loser and I should just go work! (Like I could last more than a week, and trust me I've tried)

No local charities here. Except salvation army but they only provide cheap clothing and mass every sunday.. I am atheist so I've got nothing to do with the church, and even then, all that is very different in Iceland. You cant really get much help from those places.

Ok, so my knowledge on healthcare in Iceland is pretty much zero lol, but I do suggest persistence finding a GI & getting to the bottom of what's making you so unwell. I'm assuming the colonoscopy & endoscopy was clear? Have they done a pill capsule test? Going through the ER is a nightmare so if u can get a gi that works with you then all the better. Unfortunately many on here can understand the whole "you don't look sick" comments. I've had crohns 30 years & heard it all my life, ohhhh it never gets old 🙄 Define what "sick" looks like lol...
I'm sorry that u don't have much physical support, hopefully venting on here will help a bit. I'm sure as soon as you find a diagnosis (whatever it may be) you can start moving forward as limbo land is such a blur... sending hugs to Iceland
06-29-2017, 09:32 AM   #6
Jabee
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Join Date: Oct 2016
Location: Massachusetts

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Since your appendix and some of your intestines were removed you might have adhesions from scar tissue. Can you ask your doctors about it? Some doctors do neglect patients; is there any way you can talk to your regular doctor about checking for abdominal adhesions?
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