09-01-2013, 12:34 AM   #1
SolisSpirit's Avatar
Join Date: Oct 2012
Location: Madison, Alabama

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My Story - Solis

Eight years ago I started having bouts with loose stools. It was rather unexpected, one afternoon, as I was walking to the public library. I noticed all of the sudden I had to go really bad, but there were no bathrooms around. I was next to a post office, and so I went in there trying to find a bathroom, but to no avail. So, being downtown, I walked to the event center where I barely succeeded in not having an accident. I had to call a cab home because I was terrified I would have another incident.

Over the next few months, I noticed I was having more scanarios, and so I went online and found something on IBS. I had no pain, no craps preceeding the bouts (or after for that matter), no fever, no discomfort, and no problem sleeping or eating. In a nutshell, I had nothing wrong with me that I could tell. However, being worried, and having no GP, I went to the E.R. one day to find out what was going on. I had blood test taken, and everything came back "perfect". The E.R. doctor referred me to a specialist, but I didn't go because not only was I told my blood work was good, but I didn't have insurance, so I didn't make it a high priority because I presumed I had IBS, which was fairly common and not so threatening. So, I learned to take Immodium everyday to lessen the bouts that I had, so that I could function socially without worry.

This all was fine up until about two years ago, when I began losing facial weight and having grease in my stool, or fatty stools as its sometimes called. It worried me because, although I still wasn't having any acute symptoms, and felt fine, I was losing weight without trying. So, I went back to the E.R., and was told the same thing. Blood work was fine, and I was referred over to a specialist, or gastroenterologist. This is when I was tested for fecal fat test and found I was only absorbing about 70% of my daily fats. This was a year ago. My doctor then told me he didn't know what was going on, and although I mentioned celiac and crohns, and colitis, he didn't seem like he had any idea. He basically set me up for every test to figure it out. Right before my colonoscopy, I was called and told that my insurance wasn't accepted and I would need to pay out of pocket. I was floored. So, I found another GI. (btw, I'm a college sophomore, and I work 3rd shift making about 8 bucks an hour with my own personal bills)

I found another GI and after waiting a month to get in, I had a different insurance, which was better, and a new hope. The doctor seen me, said he could tell I had lost weight, pushed on my stomach, everything was soft and there was no pain anywhere in the abdomen. He asked me if my thyroid had been tested and I said I didn't know, but later on I found out it did and it was normal. He sent in a test to see if there was inflammation involved, but I never got those test results back so I don't know. However, he scheduled me for a colonoscopy and endoscopy, and the day before my procedure I was told my insurance would not cover the cost because since I had loose stools before the tests, it would be considered a pre-existing condition and the insurance company wouldn't cover it. I was told I would need to pay for the procedure ahead of time before the procedure, but I would also have to pay for the solution liquid stuff before the test becuase insurance companies this year weren't covering it. Six months later, here I am again waiting.

In order so that I maintain my weight, I have been drinking Ensure's twice a day. I have increased my caloric intake by a third, so I'm eating more, though if I have celiac I'm not helping because I'm eating more gluten probably than ever before. I'm managed to be pro-active about my struggle by doing everything I can to help the problem, at least until I can get insurance again when my fiancee and I get married in two months and I can be put under her policy. And by this time I may have saved enough money to pay for the $800 dollar procedure anyway. But, the biggest issue I have is depression, because all of the weight I've lost has came from my face and hands, but mostly my face, which looks all sunken in. Sometimes I get told things like, "you need to put on some weight"....like I don't know. And when I'm told this by people I work with, it doesn't help. And I've really done all I can do right now to help it.

At any rate, I'm frustrated to say the least. I hate sitting around not going to a doctor when I know I need to, but I have no choice. I'm stuck sitting around, watching myself lose weight, in addition to being made a mockery because of my "silent disease" that I still don't know what it is. Had I more acute signals or signs like you would have when your brain tells you to go to the doctor, like pain, bleeding, etc. I would have seen a doctor eight years ago, but to this day I don't have any....ANY. Nowadays I have little signals like after I eat popcorn, I will get what I call eye-headaches, but which I later found out was probably uveitis. I also get these headaches when I drink malt-shakes, or eat something that doesn't digest well. I'm also lactose intolerant, in that I can't have a lot of dairy; I'm not completely lactose introlerant. I have to take Immodium everyday, otherwise I'm in the bathroom 15 times a day, even through the night. I have no pain, no problem sleeping, or anything else outside of this.

That's my story.
09-01-2013, 02:23 PM   #2
Forum Monitor
bozzylozzy's Avatar
Join Date: Oct 2011
Location: Sheffield, UK
Hi solis.. welcome to the forum..
I am so sorry to hear that you have had such a rough time.

I dont really know what to advise because im in the UK and dont know how it works when you dont have insurance. But you definitely need to have this looked into. Do you have any family history of IBD?

I am at a loss as to what to advise you.. however feel free to ask any questions or vent at any time. And I hope you can get some answers soon

Edited to add: congrats for your wedding
Grumbling Appendix removed OCT'11
Chiari Malformation diagnosed JUNE'12 (surgery 5th July)

Alternating diagnosis of:
Seronegative Inflammatory Arthritis / SAPHO syndrome

Vitamin B12 injections
(Previously Prednisolone.. worked a treat!)

Watch out.. there's a blonde about!
09-03-2013, 01:15 PM   #3
Senior Member
Join Date: Mar 2012
Location: United States

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I am sorry you struggling with all this. I am sorry you cannot take the tests you need to take. I live in the US ( Chicago IL) and I know how awful the health care is here. Everything is through the roof! They charged my insurance thousands of dollars when I had my colonoscopy! Ridiculous!

I am not sure what to say about what is going on with you. Were you diagnosed with having Celiac's? I know that if you are eating gluten, this can really cause upset an Diarrhea. I would try and go strict Gluten Free if I were you. I do not have celiac's, but I cannot tolerate Gluten at all.

Is there any meds that the doctor can give you until you are able to see a GI doc and have these tests? Sorry you are dealing with this....

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