I'm due for a big show down in a couple hours with my GIs. Basically, I'm not digesting fat properly for one reason or another and it's causing me malabsorption which is resulting in fat soluble vitamin deficiencies. It's causing me horrible joint pain and so on that's getting disabling. I'm sure they'll fight with me for the hell of it but the undigested fat being rocketted from my ass on a regular basis is a little obvious.
They did a scope a little while back and found inflammation and erosion (mild ulceration) in my stomach and duodenum. They decided it was nothing and couldn't be bad enough to cause me problems and didn't want to talk about it despite the fact that it was matching precisely with where the pain was (quite literally they told me they just didn't want to talk about it). Before that they sent me to a rheumatologist who found a vitamin D deficiency, gave me a vitamin D mega-supplement for a couple months, and then refused to do anything more (including retest to see that the vitamin D level was back to normal).
As far as they're concerned it's just IBS because while on steroids I had a negative colonoscopy and a couple negative CRPs (I had positive tests in the past but it was so long ago the records were destroyed and they seem to think I'm lying about it). Of course none of the IBS drugs or acid reducers do anything but give me terrible side-effects that required the intervention of my cardiologist to stop. On the other hand steroids have always worked on my symptoms really well.
So, any advice? I need to somehow make these guys treat me before I end up losing my job and basic quality of life. I've been suffering from the abdominal pain, bleeding, etc for nearly a decade now and as long as I can get a small supply of mild narcotics I'll be fine. But now, with the malabsorption, there's something going on that's going to not just make me suffer, but damage my body. My joints are already pinching and slipping. I doubt osteoporosis is far off if it's not in the early stages now. That's just the vitamin D that I know has been a problem. The other deficiencies are more insidious.
Frankly I don't care what they think is the cause. If they're dead set on not confirming the earlier crohn's diagnosis then fine, but I want the inflammation in my stomach and duodenum gone so I can at least healthy enough to not lose everything and end up on the street. I'm just at a loss as to how I'm going to get that done.
They did a scope a little while back and found inflammation and erosion (mild ulceration) in my stomach and duodenum. They decided it was nothing and couldn't be bad enough to cause me problems and didn't want to talk about it despite the fact that it was matching precisely with where the pain was (quite literally they told me they just didn't want to talk about it). Before that they sent me to a rheumatologist who found a vitamin D deficiency, gave me a vitamin D mega-supplement for a couple months, and then refused to do anything more (including retest to see that the vitamin D level was back to normal).
As far as they're concerned it's just IBS because while on steroids I had a negative colonoscopy and a couple negative CRPs (I had positive tests in the past but it was so long ago the records were destroyed and they seem to think I'm lying about it). Of course none of the IBS drugs or acid reducers do anything but give me terrible side-effects that required the intervention of my cardiologist to stop. On the other hand steroids have always worked on my symptoms really well.
So, any advice? I need to somehow make these guys treat me before I end up losing my job and basic quality of life. I've been suffering from the abdominal pain, bleeding, etc for nearly a decade now and as long as I can get a small supply of mild narcotics I'll be fine. But now, with the malabsorption, there's something going on that's going to not just make me suffer, but damage my body. My joints are already pinching and slipping. I doubt osteoporosis is far off if it's not in the early stages now. That's just the vitamin D that I know has been a problem. The other deficiencies are more insidious.
Frankly I don't care what they think is the cause. If they're dead set on not confirming the earlier crohn's diagnosis then fine, but I want the inflammation in my stomach and duodenum gone so I can at least healthy enough to not lose everything and end up on the street. I'm just at a loss as to how I'm going to get that done.
