The Medical Equivalent of Passing The Buck.
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!
Great.
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.
I think the fact that the doctor is taking a very real interest and wants to be sure, is a good thing. The fact that you didnt get any relief from the pain is a bummer. Hope you get both some meds and some answers soon.
that toally sucks. I hate thinking that you are going to find a cure… some relieve… something and then be right back where you started…
My mom is going through the same thing right now with her back– though a totally different thing, the same passing of the buck is going on… and it is not good.
this is why they call it a medical practice, not a medical perfect,
Doctor’s don’t know shit – and we are human guinea pigs….
Nothing anyone can say will make you feel better…but I hope you do, and soon.
You don’t have Crohn’s like I don’t have lupus. Doctors suck.
I have a rare autoimmune disease. After I had spent about 20,000 going to different docs and having tests run that they would say flagged something that meant I needed to go to a different doc, I finally diagnosed it. She basically said any of these other doctors could have done the same, but instead ran these expensive, crap shoot tests.
So, on the list, you forgot to add expensive bill because you know if only one random lab in California can to the lab work it ain’t gonna be cheap.
Also, I took hydrocodone in my second and third trimester when needed ad it was fine.
Firstly, I LOVE the new blog. I so need a Makeover in that regard it’s not even funny. Can I hire the Daver?
Secondly, Ugh. I’m of no help whatsoever, other than telling you I can repeatedly call and harass all the MDs involved until you get some relief, diagnosis or no. I’m not remotely clear as to why he can’t treat the symptom while he waits for the definitive diagnosis; either the ultimate medication is safe, or it’s not and it doesn’t matter what we call it, does it?
I’m just a Dr. of History. What do I know. Hang tough.
Yes. This is why we love and trust the medical profession. (snort) It seems like so often the doctors are more interested in the scientific WHY of something (which I can understand) than the human suffering factor.
I’m so sorry.
Bless your heart and hang in there.
I have to wonder if maybe you aren’t being taken seriously because the GI idiot is scared of doing anything while you are pregnant?
I am in pain on a daily basis and usually by the evening I can’t walk without looking like I am severely handicapped. But the rheumatologist said it wasn’t bad enough to warrant treatment because I am still mobile. Some quality of life, right? My knees are so bad I sleep with the heating pad because, like you, I don’t want to pop pills while incubating. My back/hips are grinding away with each step and I’m afraid to put the heating pad there for fear of baking Puff.
I can only hope that karma comes back to bite the idiot doctors in the arse.
Oh, I have not yet started knitting your hat. I suck.
No doctor wants to prescribe more drugs for a pregnant woman with Crohn’s disease. And, no one wanted to tell you this before your appointment. The doctor was probably not asked “Can you offer any treatment to a pregnant woman with Crohn’s disease?” His staff just scheduled you, and deciding what to do about your symptoms was not in their job description.
All I can say is to try to relax and ride this out, and the medical world will be able to offer you something after the baby is born.
BTW – I love the new hard wood flooring you installed on your blog!
I feel your frustration. It took me 4 years and several doctors before I was finally diagnosed w/lupus anticoagulant. Blood thinners suck, but blood clots are worse.
Hang in there, and for God’s sake, pack some Depends in your purse!
I’m sorry the doctor didn’t provide you with any effective relief for the pain… that really, really sucks.
And ‘Melissa’s friend’ sounds like an evil, meanspirited petty piece of work. People like that aren’t worth your time or thoughts.
And I love the new layout, especially the colors.
(As you can see, I’m catching up tonight).
At this point you should be seeing a high risk OB, not your regular guy OB. The high risk OB will prescribe you the meds you need. Not to scare you, but there’s studies that show women with active crohn’s or colitis have a higher chance of an adverse outcome while pregnant. They should be doing frequent growth scans, because if you can’t eat or absorb nutrients, then neither can your baby. My brother is a GI at a very famous hospital in the US and he prescribes steroids for pregnant women all the time if the benefit will outweigh the risk. You just need to be closely watched. In fact, some women are even on biologics (I forget the brand name right now) and have gone on to have healthy babies. So if these doctors aren’t giving you meds, then you need to march on down to a different, preferably big city, hospital. My U/C is inactive, and they still had me do growth scans every 4 weeks when I was pregnant with Hannah. And I think I mentioned it before, prednisone is safe in most cases. Crohn’s is not something to be f-ed around with, so start banging down some doors. Call the maternal fetal medicine group at your hospital now. Right now.
Second, try a low residue diet- meaning no roughage, raw veggies, high fiber etc. You might feel less pain if you eat easier foods to digest.
Doctors can be so darn frustrating sometimes. You go ahead and feel a little sorry for yourself. It sounds absolutely miserable. Keep us posted on whatever you have/don’t have.
I hate to say that I’m not really surprised that he didn’t want to give you anything. But it still sucks.
Ugh, that sucks… every new neurologist I see runs the same exact tests and want to pump me full of steroids or non-FDA approved drugs. The new neuro I see now, is fantastic and he works in the same office as my crazy ass old neuro, who couldn’t stop adding meds on top of meds and gave me whatever narcotic I wanted. Doctors are so weird… I hope this gets cleared up for you soon. It’s always really difficult to find a good doctor.
BTW- When pregnant, I always carried extra clothes with me as I would soil myself in some way and I don’t have any issues, just a leaky digestive system.
I was just going to mention the possibility of celiac disease, but then noticed that someone else has already suggested you be tested for that, so I’m definitely going to second that suggestion.
I wish you had been able to get some relief. I know what it’s like, on a lesser degree, to build your hopes and stamina up on even just the idea that you’ll feel better quickly after seeing a medical professional, and then having that dashed.
you should ask to be tested for celiac disease – i was sick for 10 yrs with many crohn’s-like symptoms before i was diagnosed.
I think I would be depressed if I was told I didn’t have some disease I’d been being treated for over years. (What an awkward sentence that was.) Yeah, what else could it be? I hope it turns out to be something they can fix, but if not, I hope it is what they thought all along so that you could at least get some help. Not knowing is the worst.
Poo (literally) on the Doc. Seriously though … there’s a reason why doctors become “specialists.” They only want to deal with the ends (ha ha … couldn’t resist) they’ve specialized in. Butt seriously … okay, I’ll stop.
I remember the day that I came to the realization that doctors didn’t know shit. It was as disappointing as the day that I realized my parents were just people.
I’d like the doctors to spend a day in your shoes.
It kind of makes me want to take a giant crap on your doctor’s desk.
That just stinks. I agree with CLC (and not just because we have the same initials!). You should be seeing a high risk OB at this point. If the benefits outweigh the risks, then you should be on something for the pain regardless if you have a confirmed diagnosis or not. Being in constant pain raises your blood pressure and that’s not good for you or the baby. Ergh! You have every right to feel frustrated and upset.
i’m thinking he could have provided that consultation over the phone. i mean seriously, people go to the doctor because they need a script. most informed patients already know what they need you to do when they show up, and they need you to do something they cant do themselves. like a surgery or a script.
eh. i’m sorry. i mean, seriously, the pain must suck and no one is helping you deal with it. i’m sorry dude, i truly am!
damn diseases.
My mom has Crohn’s, and colitis, and interstitial cystitis. I say that not to diminish what you’re dealing with, but rather to say that I know more about your situation than the garden variety reader.
I’m sorry your quest went unfulfilled. Did you end up getting the work started for the new test? Even if you have to wait, it’s worth knowing, isn’t it? In the meantime, can’t you get codeine OTC with Tylenol No 1 or 2?
You can whine all you want. Don’t let anyone tell you otherwise!
I wish there was something I could do for you. Hope you get something to relieve the pain.
I like the new look.
BTW- I’m on a new medication that causes nausea, vomiting and EXPLOSIVE diarrhea. We can poop our pants together and I’ll pretend I’m pregnant.
Doctors are pussies! So sorry you didn’t get some pain meds ;(
I LOVE the new layout.
And I hope you’re finally getting some relief.
Becky – sending you hugs and wishes for no cramps or crap anywhere where it is not supposed to be.
Hugs. I have nothing else to offer, having given up on the med establishment long ago.
And if I’m not mistaken, someone DID finally give you codeine?? HUGs to that person as well!!
And YAY kitties!
So I stumbled upon your blog this afternoon in a mess of gotta do something while my crotch parasite (ha ha ha!!) is sucking the life out of me through my right boob so I’ll cruise the interwebs and clicky clicky clicky what the hell was I looking at in the first place again?
Anyway, first, you are funny as hell. Second I just remembered how I found you, cakewrecks listed the other blogwhatevah winners and third I am now starting to wonder if all of my suffering is crohns too. Hmm.