Crohn's Disease Forum » Your Story » Diagnosed in 2007


05-07-2011, 01:02 PM   #1
spacegoddess
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Diagnosed in 2007

Let's see here....

I had symptoms of Crohn's from age 15 onward, but was not diagnosed until I was 21. My symptoms and the related (and unrelated) psychological issues were bad enough to force me to drop out of high-school at age 16 (I got a diploma at Job Corps by taking the GED test and writing a short essay).

From soon after I dropped out until a few months after I turned 21, I had no health insurance, but as soon as I did I went to the doctor, who referred me to a digestive health specialist for colonoscopy and endoscopy, which together painted a clear enough picture for the specialist to diagnose me with Crohn's Disease and GERD. Overall what they found were: a large hiatal hernia, GE Valve Grade IV, erythematous mucosa of the stomach, and I forget exactly what they found in my ileum, colon, etc., but I recall there were diverticula. I unfortunately lost the report and images they took (of course they still have copies).

I was in a flare when I got the diagnosis, and had one flare after that. I am currently in the early stages of yet another flare.

I describe myself sarcastically as having won the health jackpot. In addition to the Crohn's disease, I suspect I have Ehlers-Danlos Syndrome (a fairly rare connective tissue disorder which sometimes causes hiatal hernias and diverticula, along with hyper-flexible joints that pop and slip out of socket very easily, and a whole bunch of other symptoms) and Fibromyalgia Syndrome (which often manifests with GI symptoms, among many others). Unfortunately, I have no job, no insurance, no money, no regular doctor, and no access to any medical care of any kind. I can go to the hospital ER if there is an absolute emergency, otherwise I am on my own.

I was put on Asacol after my diagnosis, and was quickly brought up to the maximum daily dosage, and it turned out I couldn't absorb the pills at all. They also tried me on two different medications to control the terrible abdominal spasms, both of which contradictorily made the spasms about five to ten times worse than they already were. After that I lost insurance. OTC and most prescription anti-inflammatory medicines do not work for me at all. Often the tablets don't even break down, or only partially, and regardless, I get no relief of any kind from those medications, whether I take them short-term or long-term. When I have been prescribed Vicodin in the past, one 5/500 tablet will take 45 minutes to kick in after I swallow the dose, then provide about 45 minutes of slight pain relief (one, maybe two points out of ten on the pain-scale), and then wear off very quickly, leaving me in pain again for hours before I can take another (not to mention how much worse they make my nausea). Percocet, while kicking in faster (about 20 minutes) and not making me nearly so sick, wear off within an hour after swallowing the dose. I was tried on Tramadol as well, which was also not really effective, but my former doctor decided to write a whole bunch of scrips for it one after the other instead of weaning me off it, and then she dropped me from her practice without notice or explanation when I was taking 300mg of the stuff per day. I spent about six weeks going through a hell of discontinuation symptoms (think heroin withdrawal, only it takes several times as long) before slightly leveling off and feeling normal for a couple of weeks. Then the flare kicked in, and that's where I am right now.

I have severe depression and anxiety, ridiculous amounts of guilt for mostly no good reason (the only GOOD reason I have to feel guilty is all the food I have wasted attempting to eat when I have no appetite). Because I have sensory integration issues, I can't handle the taste or texture (or smell, or even SIGHT) of certain foods, and can generally tell from the appearance, smell, feel, or texture of a food whether or not I am going to be able to swallow it. Otherwise I am almost completely physically incapable of swallowing it (and if I DO manage to swallow something my body has declared is "wrong," I'll end up throwing it back up very quickly anyway, so it's not worth it). I've tried meal-replacement drinks, protein supplement drinks, electrolyte drinks, and cannot stand a single one of them. Unfortunately, bland foods are often very difficult for me to eat (it goes back to my sensory integration issues).

I'm lucky if I manage to eat 400 calories worth of solid food in a day these days. I find myself crying a lot and not really knowing why, and wanting to punch the crap out of inanimate objects at random intervals, and it's hard for me to focus or follow a train of thought or conversation. I just don't seem to care about doing anything anymore. Not that I did anything in the first place. I don't have any friends.

This is probably all out of order but my "crystal ball" is telling me I need to spend some time in the bathroom, so I'm posting it as is.
05-07-2011, 04:15 PM   #2
mikeyarmo
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Welcome to the forum spacegoddess.

I am really sorry to hear about all the health problems you have encountered. That is more than anyone should have to go through and the long period before you were diagnosed certainly could not have helped.

I hope you know that it is not your fault what has happened. I do not know if there are any resources in your area that are available, but do you think it would be helpful to speak to someone about the psychological aspects you deal with due to your health challenges?

We are here for you also so feel free to post your questions or vent away.
05-07-2011, 04:19 PM   #3
spacegoddess
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There are no resources of any kind of a free nature in my area that I qualify for, I've looked into it many times, with the help of different advocates.
05-07-2011, 07:18 PM   #4
mikeyarmo
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I am truly sorry to hear that. I don't know if there are any colleges near you as they might provide services at a much lower cost than you would typically find.
05-07-2011, 11:09 PM   #5
ameslouise
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Hi Space Goddess and welcome.

I am sad to read your story. You sound so alone! It must be just overwhelming to deal with all of those health issues on your own with no professional medical care. If it is at all possible to get yourself to a doctor, there are assistance programs for some Crohn's medications like Humira, which is available for like $5 a month thru the manufacturer. Maybe worth looking into if you haven't already.

If you are looking for support or just a place to commiserate with people who know what you are going thru, you have come to the right place! There are a lot of knowledgeable and friendly people here.

Good luck - I hope you can find some relief soon, somehow.

- Amy
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