I'm very angry and frustrated. I've read a lot of the stories on here. I'm luckier than a lot folks here and for that I'm thankful. I have the love of a good wife and the support of a great company.
My symptoms now are not as bad as a lot of folks here. But only because I literally felt like I was dying two months ago, stopped doing what the idiot doctors told me to do and started treating myself. (They had me on PPIs and narcotics. PPIs made no difference and narcotics kill me. They constipate me, after 7 days w/o a BM I'm in the ER.)
I've been sick for a year now and still don't have a diagnosis. It started with vision changes this time last year, then right side chest pains 3 months later accompanied with bowel habit changes and GERD, then “food poisoning” three months after that, then gallbladder removed three months after that. Now I've been out of work for the last 3 months and the idiots at the short term disability insurance company have denied my claim b/c there's “nothing wrong” with me; even though I have a ton of medical evidence showing otherwise. I'm working with my company on ADA accommodations that basically boil down to I'll have to run to the toilet whenever necessary. I'll be returning to work soon, even though my symptoms are not yet well managed.
I've done a lot with diet (after reading here I see there is more to do), supplements, digestive enzymes, pre/probiotics and herbal antiinflammatories. I need “western” medical help as well and can't get it b/c all of the stupid doctor's can't figure out what's wrong with me and don't want to “make it worse”.
I've seen so many doctors and been in and out of the ER so many times that I've lost count.
I've been telling the doctors for the last three months that it's Crohn's. They look at me like I pooped in their lap, tell me to quit reading WebMD and go take another $2500 test.
I feel like I'm being milked like a cash cow. I wonder if I would have already had a Dx if my insurance wasn't so good?
Doctor's don't write down 1/2 of what I tell them is wrong with me and then laugh at me or look at me like I'm crazy or stupid. It's gotten so bad that my wife has started voice recording all appointments with her phone. I actually just had a GI falsify a visit report. He stated that I refused an ab exam. I have him on tape pushing on my gut for 5 minutes, repeatedly asking me if that hurts and me saying yes every time.
With my “home remedies” (that the docs laugh about or scold me for) I have improved from feeling like my whole body is shutting down and I'm literally dying to just feeling sick as a dog all the time.
But, even with that improvement the inflammation has spread to my right eye and I have episcleritis now. (I was born blind in my left eye.) I have bouts where every muscle in my body becomes inflamed and I can barely move. I'm still going to the toilet 6-8x a day, but that's better than the 19x a day that was happening before. I've lost 18% of my body weight in the last two months. It's accelerating. I'm now losing between .75 to 3 pounds a day now. On a good day I can eat ~16-24oz of food spread throughout the day in multiple snacks. A “meal” now is 4oz. Being a glutton on a good day (few and far between) a “feast” is ~8oz of food. When it gets really bad I just lose the will to eat and have to force myself to choke down a few bites here and there. I'm always nauseas. I could go on, but figure I don't need to; y'all know what I'm talking about.
But here is what is driving me completely and totally up the wall: I've been diagnosed recently (by the same GI, who I will never see again) with chronic peptic type duodenitis with erosions, *IDIOPATHIC* (arghhhhhaaaaaaaaahhhhhhh) IBS and a vitamin D deficiency. (How can he call it idiopathic when I have inflammation in my intestines and IBS doesn't cause inflammation!!!???)
So I tell this moron about my eyes. He laughs at me, tells me it's no big deal and leaves it out of his report!!! (*So three days later I go to the ophthalmologist and it's episcleritis!*)
This idiot GI prescribed medical probiotics that cost 4x what I'm spending for OTC and the “real” stuff does not contain one single that I'm not already getting. If that doesn't work he wants to let me suffer for two more months then put me on antidepressants. I'm not depressed. I'm mad as all git out!!!!
This genius also prescribed vitamin D supplements. Just one problem: I also have kidney stones and he knows it. The literature is all over the place on D and stones: Good, bad, no difference. But what everyone agrees on is that you should be monitored closely. So he says take high doses of D and come back in two months!
Occam’s Razor: The simplest explanation is usually right.
So let's see: I've been sick for a year, I've had my GB removed solely due to inflammation (no stones) (38% of people with gastroduodenal Crohn’s have their GB removed in the first 10 years and GDC is almost always initially missed Dx as peptic) , have episcleritis, have a vitamin D deficiency (68% of C patients), have kidney stones (probably due to D being out of whack for so long), have ulcers in my mouth, have arthritis like flare ups, can't eat red meat / greasy food / vegetables any more, can't hardly eat at all any more, have dropped 18% of my body weight in two months (good thing I was fat!), have chronic peptic type duodenitis with erosions, go to the toilet constantly, have no energy, always feel nauseous, have severe ab pain and have idiopathic IBS. I'm prone to autoimmune and auto-inflammatory disease. I have lichen planus, rosacea and myofascial pain syndorme. (And I'm starting to worry that there's something more deeply wrong with my immune system like Behcet's or CVID as I am also prone to recurrent sinus infections on top of everything else.) But, I don't have Crohn's and I need to pay the GI 4x as much for some Rx crap that is the same as what I'm already doing OTC for a quarter the price!
I wish I could scream loud enough to make people heads explode like in that old movie “Scanners”!
I'm going to see my primary today. This is my third primary in the last year. I had one tell me it wasn't her problem and get up and walk out of the room. I've been calm and restrained for a year. No more Mr. Nice Guy. I'm gonna break one off in my primary about knee deep today.
In three weeks I have an appointments with a specialist 800 miles away.
I know this guy is sharp. 20 years ago I jacked my back up really bad. I argued with the docs for a year. They all said I was crazy and nothing was wrong with me. He fixed me. In the interceding 20 years he has expanded his repertoire, picked up three more medical degrees (including a PhD in medicine) and now has a small specialty clinic focusing on the “difficult” cases. My primary will march to his tune or I will find yet another one.
And I'm so stressed over all of this that I'm set to go have my head shrunk for the first time tomorrow because I don't know what else to do.
My symptoms now are not as bad as a lot of folks here. But only because I literally felt like I was dying two months ago, stopped doing what the idiot doctors told me to do and started treating myself. (They had me on PPIs and narcotics. PPIs made no difference and narcotics kill me. They constipate me, after 7 days w/o a BM I'm in the ER.)
I've been sick for a year now and still don't have a diagnosis. It started with vision changes this time last year, then right side chest pains 3 months later accompanied with bowel habit changes and GERD, then “food poisoning” three months after that, then gallbladder removed three months after that. Now I've been out of work for the last 3 months and the idiots at the short term disability insurance company have denied my claim b/c there's “nothing wrong” with me; even though I have a ton of medical evidence showing otherwise. I'm working with my company on ADA accommodations that basically boil down to I'll have to run to the toilet whenever necessary. I'll be returning to work soon, even though my symptoms are not yet well managed.
I've done a lot with diet (after reading here I see there is more to do), supplements, digestive enzymes, pre/probiotics and herbal antiinflammatories. I need “western” medical help as well and can't get it b/c all of the stupid doctor's can't figure out what's wrong with me and don't want to “make it worse”.
I've seen so many doctors and been in and out of the ER so many times that I've lost count.
I've been telling the doctors for the last three months that it's Crohn's. They look at me like I pooped in their lap, tell me to quit reading WebMD and go take another $2500 test.
I feel like I'm being milked like a cash cow. I wonder if I would have already had a Dx if my insurance wasn't so good?
Doctor's don't write down 1/2 of what I tell them is wrong with me and then laugh at me or look at me like I'm crazy or stupid. It's gotten so bad that my wife has started voice recording all appointments with her phone. I actually just had a GI falsify a visit report. He stated that I refused an ab exam. I have him on tape pushing on my gut for 5 minutes, repeatedly asking me if that hurts and me saying yes every time.
With my “home remedies” (that the docs laugh about or scold me for) I have improved from feeling like my whole body is shutting down and I'm literally dying to just feeling sick as a dog all the time.
But, even with that improvement the inflammation has spread to my right eye and I have episcleritis now. (I was born blind in my left eye.) I have bouts where every muscle in my body becomes inflamed and I can barely move. I'm still going to the toilet 6-8x a day, but that's better than the 19x a day that was happening before. I've lost 18% of my body weight in the last two months. It's accelerating. I'm now losing between .75 to 3 pounds a day now. On a good day I can eat ~16-24oz of food spread throughout the day in multiple snacks. A “meal” now is 4oz. Being a glutton on a good day (few and far between) a “feast” is ~8oz of food. When it gets really bad I just lose the will to eat and have to force myself to choke down a few bites here and there. I'm always nauseas. I could go on, but figure I don't need to; y'all know what I'm talking about.
But here is what is driving me completely and totally up the wall: I've been diagnosed recently (by the same GI, who I will never see again) with chronic peptic type duodenitis with erosions, *IDIOPATHIC* (arghhhhhaaaaaaaaahhhhhhh) IBS and a vitamin D deficiency. (How can he call it idiopathic when I have inflammation in my intestines and IBS doesn't cause inflammation!!!???)
So I tell this moron about my eyes. He laughs at me, tells me it's no big deal and leaves it out of his report!!! (*So three days later I go to the ophthalmologist and it's episcleritis!*)
This idiot GI prescribed medical probiotics that cost 4x what I'm spending for OTC and the “real” stuff does not contain one single that I'm not already getting. If that doesn't work he wants to let me suffer for two more months then put me on antidepressants. I'm not depressed. I'm mad as all git out!!!!
This genius also prescribed vitamin D supplements. Just one problem: I also have kidney stones and he knows it. The literature is all over the place on D and stones: Good, bad, no difference. But what everyone agrees on is that you should be monitored closely. So he says take high doses of D and come back in two months!
Occam’s Razor: The simplest explanation is usually right.
So let's see: I've been sick for a year, I've had my GB removed solely due to inflammation (no stones) (38% of people with gastroduodenal Crohn’s have their GB removed in the first 10 years and GDC is almost always initially missed Dx as peptic) , have episcleritis, have a vitamin D deficiency (68% of C patients), have kidney stones (probably due to D being out of whack for so long), have ulcers in my mouth, have arthritis like flare ups, can't eat red meat / greasy food / vegetables any more, can't hardly eat at all any more, have dropped 18% of my body weight in two months (good thing I was fat!), have chronic peptic type duodenitis with erosions, go to the toilet constantly, have no energy, always feel nauseous, have severe ab pain and have idiopathic IBS. I'm prone to autoimmune and auto-inflammatory disease. I have lichen planus, rosacea and myofascial pain syndorme. (And I'm starting to worry that there's something more deeply wrong with my immune system like Behcet's or CVID as I am also prone to recurrent sinus infections on top of everything else.) But, I don't have Crohn's and I need to pay the GI 4x as much for some Rx crap that is the same as what I'm already doing OTC for a quarter the price!
I wish I could scream loud enough to make people heads explode like in that old movie “Scanners”!
I'm going to see my primary today. This is my third primary in the last year. I had one tell me it wasn't her problem and get up and walk out of the room. I've been calm and restrained for a year. No more Mr. Nice Guy. I'm gonna break one off in my primary about knee deep today.
In three weeks I have an appointments with a specialist 800 miles away.
I know this guy is sharp. 20 years ago I jacked my back up really bad. I argued with the docs for a year. They all said I was crazy and nothing was wrong with me. He fixed me. In the interceding 20 years he has expanded his repertoire, picked up three more medical degrees (including a PhD in medicine) and now has a small specialty clinic focusing on the “difficult” cases. My primary will march to his tune or I will find yet another one.
And I'm so stressed over all of this that I'm set to go have my head shrunk for the first time tomorrow because I don't know what else to do.
