Heh, well things have certainly changed since the last post. One of my GI's fellows is pretty decent. He's capable of standing up to the attending when the attending is royally screwing up. So...
We dropped the elavil and gave up on the IBS front (frankly thanks soley to my cardiologist's intervention), and I got put back on prednisone because "it's the only thing that's ever made any improvement." That was months ago. They he put me on 5mg just to see if it would do anything. Guess what happened.
My downward spiral stopped. I went to 10mg, and then everything went running the other direction and I got better. Very quickly. Life was great for quite a while. I was feeling like a normal person almost. Just a little trouble here and there every few days but nothing that could slow me down. BTW, the reason I'm posting this now is because I'm completely incapable of sleeping tonight due to the side-effects of that prednisone so, again, it's not perfect but I'm still pretty happy.
So I went back and really annoyed the crap out of my GI because I was so happy and it worked so well. Of course he's giving me prednisone and at the same time refusing to admit that I have an inflammatory bowel disorder because of a few negative tests a year ago while taking a crap-load of prednisone and me being at the healthiest I've been in 10 years. But whatever, I can see from the clinic notes that they're starting to crack and admit that maybe it is indeed possible to have mild crohn's disease without scar tissue and life-threatening complications.
So then the issue became let's get me off the prednisone ASAP. They just wanted me to taper as much as possible. So, instead I talked them into Pentasa. It's a low level inflammatory problem, right? Seems perfect as long as it's isolated to my intestines proper and not my duodenum or stomach (this is a good time to look back at the EGD episode). If it's my intestines alone the pentasa should be able to replace the prednisone.
So I started pentasa (of course they prescribed me half of the proper dosage because, as my GI says, he never uses it) and then tried to taper the prednisone. Well, each time I tried to taper all kinds of weird stuff happened. It's strange but I could watch the same chain of events occur each time where one symptom after another would chime in pretty much in the same order over the course of about 4 days. The pain was isolated to the upper left now (read: where the stomach and duodenum are) and my issues were largely bile-related.
I had one episode where I tapered to 5mg for a few days, got really sick, then I started the 10mg again and then had extreme overflow of bile. I was spitting it up, I was having tons of pretty much pure liquid bile D and so on. It just kept coming and my entire GI tract burned like hell. I took 2 tramadol and my last darvocet that morning. Then, after a few hours it just came to a stop and I started getting better again quickly. From what I can gather my biliary duct was closed off with inflammation, then the prednisone kicked in and unblocked it unleashing a flood of backed up bile into my system. Way more than I could handle.
So after 4 attempts to taper I've stopped the pentasa (it's super expensive and I can't afford it if it's not being used to get me off of the prednisone) and I'm waiting until after the december insanity to try the proper 4g/day dose of pentasa and taper again. If that doesn't work the pentasa isn't an option.
Why work so damn hard to taper when, by now, I know it's not going to work? 2 days after my last visit I FINALLY got a bone density scan. I have osteoporosis as a 25 year old male (just barely, but it's only going to get worse). That's insane. Frankly I haven't had enough prednisone for the prednisone to be the sole cause. My 'rheumatologist' screwed up even worse than I thought. I've likely been vitamin d deficient for years and years and this guy didn't even take it seriously when he had test results showing him that. Remember vitamin D is fat soluble. I have got to get off the prednisone or be stuck on it for life and end up with the body of an 80 year old at 30. I have to worry about falling and breaking my damn hip. I should be out playing football or something. That's only the beginning too. The prednisone's likely to take out most of the rest of my body too.
Anyway, to sum up what's going on with me is pretty much what I'd figured out before and my doctors kept wanting to blow off as nothing. Only now it's got a rapidly growing body of evidence. Proven simply by what does and does not happen in response to carious stimuli. Good ol' scientific observation.
Most likely I have crohn's primarily affecting my upper GI causing issues in my stomach and duodenum and thus affecting my digestive secretions in both places causing an odd little cascade affecting the behavior of my stools further down my system such as the vitamin deficiencies, fatty stools, and general fat and fiber related issues. I'm almost certainly having issues with my ileum and maybe a little in my colon which the pentasa was suppressing. My lower right (ileum) pain and tenderness pretty much disappeared with the pred/pent combo and without the pent did come back but still is well controlled by the pred.
Other possibilities (though much less likely) that need further testing are inflammation of my liver and/or pancreas that would also affect the biliary duct or bile production. This could be primary or secondary to the inflammation and damage to my stomach/duodenum.
P.S. I found today that even though I'm feeling so well I still can't eat salad. Damn you Olive Garden!!!
