On Thursday of last week, I contacted my OB about my Crohn’s flare-up and was (surprisingly) immediately referred to see a new GI doctor, which was far more than I’d expected. I expected a conversation in which I was told to pretty much “suck it up and put on your big girl panties,” but I was taken seriously. I was even able to make a next-day appointment at this new GI doctor!
So, I allowed this fantasy of being Taken Seriously by medical professionals to comfort me all that night and the following morning. Finally, I said to myself, I might get some relief from this pain! I might get some meds that will work better than the Suck It The Hell Up approach that I’d adopted for so long (just because I haven’t been in an active flare-up for awhile doesn’t mean that I have the colon of someone less diseased than myself), and I allowed myself to have some real hope that conditions Down Below might improve.
My poor husband was dragged with me to my doctor’s appointment, because I was feeling awfully weak and didn’t want to chance driving. When I’m in active disease, I don’t like to leave the house having eaten anything. This reduces the likelihood that I’ll get stuck somewhere and crap my pants in public (easily one of the most shameful things I can imagine, and something I’ve thus far avoided). This also, especially while pregnant and starving, makes for a really woozy experience, in which I may or may not black out for awhile. Ah, the things we do to avoid humiliation, eh?
We were called back to meet this new doctor, and I was impressed immediately by the fact that like most other specialists, he sat down and actually listened to me. After giving my extensive history and reiterating my symptoms for what felt like the 45th time that day, I directed him to the back of my chart where all of my old charts, labs, and diagnostic findings had been stashed. I was lucky, it appeared, that although my old GI doctor had changed practices, I’d miraculously been referred to the exact same practice.
Ergo, my chart was still intact from years ago.
He poured over them, worry creasing his brow, and reported back that he wasn’t too sure that he agreed with my old doctor’s assessment of The Situation. The pathology from my upper and lower GI indicated Crohn’s, but the other tests appeared to be more on the normal spectrum. My symptoms still matched Crohn’s, but as I was pregnant, he wasn’t thrilled with the idea of prescribing huge doses of medication without a definitive diagnosis.
(Complete aside here: with many medical diagnoses, there is no Golden Standard test (s) that indicates 100% for sure that what someone is suffering from is SPECIFICALLY. It’s often a collection of various puzzle pieces that make a more cohesive, but still tentative, whole. Which can lead, of course, to misdiagnosis, which is always frustrating.
I remember reading a study that found that people who had been told that they had cancer, but later found that they did NOT have cancer, became quite depressed. It happens, I’m certain in other cases as well.)
So, my new GI doctor, advised, he would write a lab order for drawing about a thousand different types of blood tests to see what they showed now. There was, he said, a new test that could say more definitively if I had Crohn’s or not. BUT (there’s always a but, isn’t there?) this test was relatively new and would take many weeks to process as it had to go to a special lab in California.
Fine, I replied, thinking that the last thing I’d wanted to do was to add more meds to my regime, especially while pregnant. Shit, I get upset when I have to take a Benedryl to sleep at night, because I’d just rather not chance it while incubating.
But, I asked, what on earth can I do about the pain? Crohn’s or not, meds or not, I needed something that could provide me with some sort of relief. If the pain was bad enough to send me wobbling to the doctor, it was bad enough that I needed the comfort in knowing I could relieve it somehow.
Except, not so much.
He didn’t feel comfortable prescribing codeine for me, but I could call my OB! And beg for (barely) narcotics!
Why did I bother coming here to be told this? Why did I drag my wobbly self out to essentially have the buck passed directly back to someone who had no real experience with GI issues (my OB)?
In the long run, it’s absolutely going to go down as something that is Worth It, but for then, for Friday, for Saturday, for Sunday, and for the next couple of weeks, I can’t help but be upset. Sure, potentially not having Crohn’s is a wonderful, wonderful thing, of course it is! That’s GREAT news.
But then…what the hell IS IT? If it’s not Crohn’s, which I’d had meds that worked for back in the day before I could afford to be on them, then what the hell is wrong with me? Crohn’s, while crappy (punny!), was still something that I could control on the meds I can now afford.
And even more importantly than that, how I can I feel better right now? How can I control the cramping and the pain and the frequency and the general malaise that comes along with it? Because I was given jack shit to help with anything. Hell, my OB didn’t even return my call asking for a codeine script!
So while it will be Worth It someday, when I have an answer–which is likely NO real answer, if this is not, as I was told, Crohn’s–I can’t help but be the sad sack crying just a little bit into my sleeve while waiting for blood work. Because at this point in time, I could give a flying poo about any diagnosis, I just want some relief.
Which is, of course, harder to come by than even I’d expected.
/end flagrant whinging.
Thank you to everyone for the positive comments both on Melissa’s friend–whose name I don’t say because that bitch is totally insane enough to Google her own name, hell, she probably has a Google Alert on her name, which, hahaha!–and about my Crohn’s. I don’t tend to like to dwell on things like this that just suck, no matter which way you cut it, and over the years, I’ve gotten so used to the symptoms that I often forget (until I flare up) that other people don’t live like this.
I’m thrilled that you like my new layout. I never did manage to snag a web designer, so this is a template that was tweaked by my darling The Daver to fit what I needed it to. I’m pretty thrilled by how it turned out. And for those of you who mourned the loss of my kitty cat picture, have no fear: Daver read your comments and WITHOUT ASKING went and put it back. Check the sidebar.