06-12-2018, 07:42 PM   #1
undiagnosedleigh
 
Join Date: Jun 2018
My Story

Hello everyone! I'm new here so I thought I would post my story, I'm going crazy over here and running out of options. I am 25 years old, female. I've always been perfectly healthy my whole life, until September of 2017 hit. My stomach started hurting, I had diarrhea, which I thought would go away in a day or two, but I was wrong. 10 months later, it's still here. Before I go into detail about my medical struggle, let me give you some context first. I'm 25, in college, 4 years down, 4 years to go. I have no health insurance, no job because I'm a full time plus some college student, which means I'm also a broke college student with no money to pay out of pocket medical costs. Also, I live in Mississippi. As of now, I have been to the emergency room 40+ times in this 10 month time span and have been denied by 10+ gastroenterologists. I have had a plethora of symptoms, which have been constantly changing these past months. I've tried different hospitals in this area, but since it's Mississippi, my options are limited. I live not even 2 miles from the worst hospital ever. I've been there more times than I can count and the doctors all know me personally by now which is very unfortunate because none of them take me seriously. The next nearest hospital is 55 miles away, I have also been to it several times. Same story with the first hospital. I once ended up driving 3 hours to another hospital and got told I had an infected colon. That was when all this first began. Since then my colon has been infected 3x. My long list of symptoms is as follows: diarrhea, severe constipation, bloody stools, painful bm's, vomiting, nausea, abdominal cramps, debilitating abdominal pain, extreme weight loss, malabsorption and vitamin deficiencies (potassium, iron, calcium), weakness, dizziness, migraines, heavier menstrual cycles, constant infections, repeated dehydration, abdominal swelling, and fatigue. It almost cost me my education and scholarships and it did affect my grades poorly, but luckily I had understanding teachers who let me make it. Anyway, I still haven't a proper diagnosis, no colonoscopy, endoscopy, nothing. No help from a GI at all. The most in depth test I've had is a ctscan from the emergency room. Which showed colon inflammation. Now for the plethora of diagnoses the emergency room doctors have given me: crohns, ulcerative colitis, stomach flu, just diarrhea, just constipation, IBS, ulcers, low blood pressure, pelvic inflammatory disease, ovarian cysts (this showed a ctscan also), kidney stones, gastroparesis, infectious colitis, cervix inflammation, and my favorite "thc abuse." But since I haven't seen a gastroenterologist, I don't actually know what's going on. Emergency room doctors and these sliding scale clinics have given me countless referrals to different GI's and yet I'm always denied because of my lack of healthcare. Even though I filled out and sent in 2 different charity/financial aid applications. I even went into a GI's office to demand help. They actually agreed to let me make payments as I could and I signed a paper stating that I would at least pay a minimum of $20 a month and they would treat me. Well the doctor wasn't there and the GI nurse pulled my ctscan from the emergency room and said it looked more like ulcerative colitis than crohns, but there was no way to know without a colonoscopy. Well anyway they scheduled my colonoscopy then called and demanded $500 be paid up front before the procedure. I didn't have $5 to my name much less $500 and all they said was "we don't work for free." I told them no, but they let people die for free and hung up. The American Healthcare system is so scary. I am 25 years old and yet I feel like a 90 year old woman on her deathbed. I have some good days though, but they never last long. I've been on dexamethasone and prednisone, which make me feel normal, but right now I'm not on anything except for flagyl for a female infection and birth control pills to hopefully get rid of the ovarian cysts. I was on Tylenol 3's, but I'm not anymore. All I'm using is cannabis and a multivitamin. I am lost as to how to get proper medical help. I considered going overseas (this is how desperate I am) to go to a free hospital, but in order to afford even that I would have to use my school refund check which would mean throwing away my college stuff, dropping off, going somewhere I've never been, I wouldn't have leftover money to come back on or to live on once I got there, and even if I managed to get back, I would have no college to go back to. My scholarships would be revoked and I would be immediately required to start paying on student loans. Anyway, sorry so long, but this is my situation and I am losing my mind because of how these doctors are more worried about my pocket than my colon. I am losing my mind because I don't have any clue what this disease is or what it's doing to my body. I am losing my mind because I have no options and I feel stuck. I was hoping maybe someone could give me advice on what I can do. Also, I almost forgot to mention this, I did a total dietary rendition. No soda in 10 months! I'm eating healthy and avoiding foods that flare IBD up, but honestly this diet hasn't even made a difference.
06-12-2018, 08:24 PM   #2
Trysha
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Join Date: Aug 2009

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Hello Leigh....
You have my heartfelt sympathy for all the suffering you are currently enduring and I do hope you will soon be helped by someone in the medical profession who really cares for the sick.
I thought doctors were mandated to heal the sick whether the patient can pay or not.
It is very shocking to hear your story and all the mixed diagnoses you have been given.
You certainly need a Gastroenterologist to diagnose your current situation.
I have found a website that you might find useful....
freeclinicdirectory.org
It lists the counties in Mississippi ...
Mississippi Free Clinics and Community Health Centres.
Take a look and see if there’s one near you.
There are good doctors out there that will help you....just have to find them.
All the best in your search.
Feel better soon
Hugs
Trysha
06-12-2018, 08:36 PM   #3
Trysha
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Join Date: Aug 2009

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You might also find it helpful to click on Resources top of this page on this site and you will find
Unemployment/Financial Difficulties Support Group
06-13-2018, 09:13 AM   #4
cmack
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Join Date: Aug 2014
Location: British Columbia

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Welcome undiagnosedleigh,

I am sorry to hear of all your struggles, you sure are having a rough time. If there is anyone available for free legal aid in your area they may be able to help you navigate the system. You have my support, I know how hard these diseases can be. Keep trying and don't give up, that's what I had to do to get any help.

Best wishes.
06-14-2018, 09:28 AM   #5
SN8888
 
Join Date: Apr 2013

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Clearly you need a good GI doc...

On your own, you can try different diets (you don't mention which ones you've tried). You can probably get a copy of "Breaking the Vicious Cycle" from the library (Specific Carbohydrate Diet). And check out the Persky Farms Microscopic Colitis Forum for some alternate approaches to diet - no one diet works for everything or everyone.

Probiotics like Saccharomyces Boulardii can be very helpful. The Pepto Bismol protocol from Dr Fine apparently works very well for microscopic colitis.
06-16-2018, 03:19 AM   #6
Cathwilms
 
Join Date: Jun 2018
Location: Tarboro, North Carolina
Why can't you apply for Medicaid? You are a student and I assume you have no income.
06-22-2018, 08:06 PM   #7
Lynda Lynda
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Join Date: Feb 2018
Location: Arizona

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cmack is right, you need someone to help you "navigate the system." I live alone and I know what it is like to try to figure things out on your own, especially when you are sick.
Praying for you.
Lynda
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