foodless in CT

I have a meeting set up with a temp agency today and I thought it would be good if I weren't passing out in their bathroom. Hence, no breakfast for me this morning. I don't like skipping meals, it makes me irritable and lethargic but last night was horrible. I was about 10 minutes into dinner when I got massive cramping lower down. I stopped eating and took a bentyl (my first one). I ate a little more when the first wave of cramping subsided but my appetite finally gave up when the pain started again, and again. Within an hour I was in the bathroom drenched in sweat, huddled on the toilet, retching into the trash-can and hoping the whole thing would just get over with. I lose track of time when things get that bad - it felt like an hour but I think the whole thing lasted only about a half hour acutely. When it was over, I felt deflated, sweat-soggy, cold and shaky for the rest of the night. Times like that, yes I will happily take a Donnatal...well, a quarter of a Donnatal.

And this, in a nutshell, is a BIG part of why my life is so very small now. Even if it's not a bad day re: joint pain, fatigue, migraine, and endo/etc., you just can't go anywhere if experience indicates that any gut cramps might turn into those gut cramps. Oh I suppose I could go places and just not eat, however while the no-food strategy works for the duration of a job interview, it is not a practical option in most situations. So I prefer to eat and thus stay close to home or at home. Ideally, I also prefer to be able to take the medicine I need to help ensure that I at least won't pass out from pain when my gut is launching quasi-digested food into the toilet 5 to 8 times a day. But without the hyoscyamine, I'm stuck fiddling with new meds and hoping one of them (timed right and taken at a high enough dose) works right. For the rest of this week, I'm planning to premedicate with the bentyl (20 mg instead of 10) rather than wait and risk another one of those horrible episodes.

In the meantime, I present for your reading pleasure a relevant (for me at least) abstract.

Simrén M, Abrahamsson H, Svedlund J, Björnsson ES. 2001. Quality of life in patients with irritable bowel syndrome seen in referral centers versus primary care: the impact of gender and predominant bowel pattern. Scand J Gastroenterol. 36(5):545-52.

BACKGROUND: Quality of life (QOL) is reduced in patients with irritable bowel syndrome (IBS) and little is known about differences in QOL in relation to referral status, gender and predominant bowel pattern in IBS patients. This study aimed to explore these relationships. METHODS: 343 patients with IBS according to the Rome I criteria (251 females, 92 males) completed five different self-administered questionnaires to evaluate QOL. There were 119 patients with diarrhea-predominant IBS (IBS-D), 93 with constipation-predominant IBS (IBS-C) and 131 with alternating constipation and diarrhea (IBS-A). The study group comprised 209 hospital outpatients and 134 primary care patients. The questionnaires were mailed to the patients with an overall response rate of 88%. RESULTS: QOL was reduced in hospital outpatients compared to primary care patients, but only in females. IBS subgroup (IBS-D), physical fatigue and general health independently predicted referral to a gastroenterologist. Females had lower QOL than males. No differences, except in severity of diarrhea and constipation, were observed between IBS subgroups. Perceived fatigue was related to well-being, psychological and gastrointestinal symptoms. Independent predictors for fatigue were depression, trait anxiety, general health and vitality, along with eating dysfunction and female sex. CONCLUSION: IBS female patients seen in referral centers versus primary care is a highly selected group with reduced QOL. QOL in IBS is affected by gender, but not by subgroup. Our findings have implications for the generalizability of results in IBS trials. Fatigue is a common symptom in IBS that correlates to general well-being and psychological and subjective gastrointestinal symptoms.

coloNOscopy

No scopy for me today. Nasty little sinus/ear infection thing got in the way. On the plus side, at least I spiked a temp before I started the prep. On the down side, trying to get a straight answer out of my doctor's office on whether or not they'd go forward with the procedure if I had a temp today was like herding cats. "Anesthesia might not want to do it..." was the best I could get out of them. Oh that and "Call your PCP". My PCP was not impressed with the turf - the nurse practitioner very strongly felt whether or not I should proceed even with a temp wasn't her call to make. And I can't say that I blame her.

Ultimately, I decided that if there was a good chance the anesthesiologist was going to tell me to take a hike and that I would have gone through the pain in the ass (ha, get it) of a full prep for nothing, I was going to bag it.

Reliability does not equal predictive value

I guess because we're in the midst of Lyme season here in the Lyme rampant states today I googled "lyme disease" + test + research. The second "scholarly article" return was this one which I found interesting enough to read in full text (and to follow several linked references to and from).

Klempner, M. S., C. H. Schmid, L. Hu, A. C. Steere, G. Johnson, B. McCloud, R. Noring, and A. Weinstein. 2001. Intralaboratory reliability of serologic and urine testing for Lyme disease. Am. J. Med. 110:217-219.
Article Outline
Laboratory testing for Lyme disease is controversial because of problems with test sensitivity and specificity, the lack of standardized reagents, and interlaboratory and intralaboratory variability [see article for hyper-refs]. We determined the reliability of a serologic test and a urine test for Lyme disease, each performed in a reference laboratory, in control subjects and patients with Lyme disease who had posttreatment symptoms.

Material and Methods
Study Subjects
We studied 10 healthy control subjects who had never had Lyme disease and 21 patients with a history of acute Lyme disease, as defined by the Centers for Disease Control and Prevention [see article for hyper-refs], who had chronic (>6 month’s duration) fatigue, musculoskeletal pain, or neurocognitive impairment despite treatment with recommended antibiotics.

Sample Collection
Serum samples were obtained from all 21 patients and the 10 control subjects. One aliquot was immediately analyzed; duplicate aliquots were frozen at −70°C and tested within 6 months after collection.
...
Results
Serologic Test
In all 10 control subjects, the initial western blot analysis yielded negative results. In three of four duplicate specimens analyzed, the same immunoreactive bands seen in the original aliquot were present; 1 duplicate specimen contained a 41-kDa band that was not present in the original aliquot.

In the 21 patients with Lyme disease, the results of the initial western blot analysis were positive in 14 cases and negative in 7. Analysis of duplicate specimens yielded identical results in all 21 patients (κ = 1.0, Table 1). The same immunoreactive bands identified in the first analysis were present in 7 of the 14 seropositive duplicate samples; 5 samples had 1 additional band, and 2 samples had 2 additional bands. Repeat testing of the 7 seronegative samples showed fewer than 5 reactive bands in all samples.
...
To sum, using the "five band" criteria, the test-retest outcome was great when we consider just the 10 control subjects. Moreover, one might conclude that a negative blood test reliably predicts/detects the absence of disease in a person who does not have the disease. Further, a positive blood test reliably predicts/detects the presence of disease in people with it. However, a negative blood test is not so great a diagnostic tool for someone with the disease. That is, there are false negatives among the 21 experimental subjects, 7 false negatives in both the test and retest conditions (- reliably). That's one third of experimental condition subjects who tested negative twice despite being diagnosed with Lyme. How do our authors interpret these findings? In explicit terms, very narrowly.

Discussion
Our study showed that testing of duplicate serum specimens from 21 patients with Lyme disease and 10 healthy controls by a single reference laboratory using a commercially available immunoglobulin G western blot kit gave 100% concordant results for seroreactivity and highly reproducible results for the identification of individual bands.

Yes, the results were "reproducible", thus the test is deemed reliable. What does this mean for practice? That is, should we extrapolate that the western blot is a good test for confirming (or disconfirming) a suspected diagnosis of Lyme Disease? The authors make a cited claim that "In patients with chronic symptoms of at least 6 months’ duration, the most appropriate serologic test for prior infection with B. burgdorferi is the immunoglobulin G western blot, which is recommended by the Centers for Disease Control as the final basis for determination of seroreactivity." which, given its context in the publication, serves to link the reliability of the western blot with it being a good tool for diagnosis.

So I guess if you think you have Lyme, you'd better hope you're not a member of portion of the population who may get a false negative test result.

For more (and quite interesting) reading on predictive value of tests as diagnostic tools (which is different from the reliability of such a test), search terms "sensitivity" and "reliability". A nice overview of the topics as they relate to diagnostic testing is given in this piece by Tze-Wey Loong titled "Understanding sensitivity and specificity with the right side of the brain".

PEG

I'm having my second ever colonoscopy on Friday. Or I'm supposed to at least.

PEG is such an innocent sounding word. Reminiscent of what is at the moment a sort of ironic song, or an ironic bit of lyrics. "Peg, it will come back to you..." And indeed, it may if what might be coming back (up) is your clear liquid dinner.

Really, it should be PEIG, which stands for "Plastic-like Emesis Inducing Gunk". Why a PE(I)G prep? Why indeed.
From EndoNurse
In a recent attempt to assess which bowel preparation agent is most effective, researchers conducted a meta-analysis by pulling studies that were published between January 1990 and July 2005.2 The meta-analysis discovered that sodium phosphate (NaP) was more effective in bowel cleansing than polyethylene glycol (PEG) or sodium picosulphate (SPS). Patients showed more difficulty completing PEG than NaP and SPS. All three were comparable in terms of adverse events, with PEG resulting in slightly more adverse events than SPS. NaP resulted in more asymptomatic hypokalemia and hyperphosphatemia than the other two, leaving the researchers to conclude that “the biochemical changes associated with a small-volume preparation like NaP, albeit largely asymptomatic, mandate caution in patients with cardiovascular or renal impairment.”

I have no cardiovascular or renal impairment. So, ummm, why am I getting the PEG prep? My theory is that I am getting the prep which is standard when the clinician assumes the patient is likely to be overweight, hypertensive, and possibly older (male). Sorry if that sounds mean. Any hostility comes from my irritation that male is still too often the medical standard, and I have some issues about which populations are sampled and then generalized to in research in general.

Anyhow, I'm not in that set - the set being people who you should give a crappier prep to because the crappiness of the prep is overshadowed by the need to not pump this person full of salt. I'm a skinny, hypotensive mid-thirties woman who fills up so fast she usually can't eat a whole meal at a time and who has a history of low Na levels.

Is this an example of one size fits all medicine or does my GI doctors office know something they should perhaps share? I'm too tired to push the issue. I'm going to try to get this shit down and keep it down, but if I end up not adequately prepped because my doctor's office insisted on a crappy prep for crappy reasons I'm probably not going to be feeling terribly compliant...at least not for a little while since I already asked once "er, do I really have to do the PEG prep?"

My prep instructions tell me that "if vomiting persists, stop the prep and call our office for instructions". When my GI's office calls back about the Donnatal/anticholinergic/antispasmodic issue, I'm planning on asking exactly how many times a person must vomit before we consider it to have persisted.

Nice site

Hey I just ran across a great section of what is looking like a pretty neat site, IBS Treatment. The section I came in through has patient reviews of various IBS drugs, with both an American version and a UK specific listing. The latter is a bit small, and I don't know if this reflects a true low number of UK specific IBS drugs or if the database just needs to be grown. To write a review, you must be diagnosed with IBS. The site is run by Sophie, who also has an IBS blog.

response to Disability Law

In response to my post Disability Law,
Stephen said...
McCain’s record of voting against issues important to people with disabilities speaks for itself. This recent complete reversal on his views is nothing more than typical McCain political pandering.

I started replying in the comment field but realized my reply is bigger than a comment.
So here goes.
I don't know McCain's record on the issue, but I'm not surprised to hear this Stephen. I do know that the quote in this article reads, to me at least, as McCain saying that his goal is to change the law to make it HARDER for people to qualify as "disabled" and thus limits the people who can seek legal recourse for discrimination and other (unnecessary, remediable) disabling circumstances.

I want to take a moment and clarify my definition of disability. To me, disability has (at least) a double meaning. That is, it can be a property of the individual when it comes to something like the ability to live without pain, the ability to think and reason at your full intellectual potential (that alone is a loaded term, "full intellectual potential". It would take another post to unpack and you all would have to bear with my halting attempts to articulate something I haven't really gotten straight in my own head. For the moment, assume I mean it in a more or less self-relative way). However, it is also and often a property of the individual in the environment. Is my now chronic joint pain disabling? Aside from the more person-based aspects of it, it certainly is in the practical or environmental sense if I cannot access accommodations like a van to get me around campus.

Here's an example. I was once told on campus that access to a certain service was a privilege, not a right. This came up when I was trying to file a deferment of student fees over the phone. "No, you have to come in in person and do it" I was told. "Can I make an appointment then?" I asked. "No. It's walk in only," was the response.

Now, it was the start of the winter semester. There was snow everywhere and my campus does a notoriously poor job of removing that snow. This means if you have any mobility issues, getting around on the sidewalks on campus is exceptionally hard. It can create insurmountable problems if you don't have the means, time and equipment included, to plan ahead. Moreover, even once you navigated your way to the building where you had to go in person to sign up for the deferment, you would have to stand (if ambulatory) in line, sometimes for over 30 minutes.

This was a problem for me. Although I can get around on my feet on all but the worst days, on most days I can't stand for a half hour, and some days I cannot stand around for much over 5 minutes. Sure, I have the option of sitting on the floor - the floor that is covered in sandy slush from the boots of students standing in line. I have the option of stepping out of line and sit in a chair and hope the people before and after me are nice enough to let me back in with no or minimal fuss (and there is likely to be fuss because due to prevailing attitudes and how I look, I would be perceived as wanting "special treatment" by my peers). Thus, neither of these are ideal options. Neither is practical, and moreover, neither allows me the minimal level of dignity and self reliance that most of us (whether more or less disableable) reasonably expect.

So what to do? It seemed reasonable to me that the university should have some way to accommodate this, and I said so to the woman on the phone. What seemed easiest was to allow students for whom the set up and culture of the campus made accessing this service in person extra difficult to access this service remotely - i.e., by phone. The woman I was talking to became contentious. Her response - deferment is a privilege, not a right.

By extension, accessing fee deferment services apparently is a privilege afforded only to students who are not easily disabled by the (remediable) environmental restrictions of the campus (in winter) and the office (year round) in the context of the culture.

Could I have arranged a van pick up/drop off, I wonder now that I've managed to secure access to the campus van. Yes. However, in the case of accessing "walk in" (ha) service on campus, you never know (a) when you'll be seen and (b) how long you'll wait to be seen and (c) how long it will take to get the business done that you came to do - all of which create problems for trying to schedule van drop off and pick up times. So the van would be a problem (they prefer 24 hour notice of pick up/drop off times and locations) and if I didn't want to end up sitting on a slushy floor or relying on the kindness of strangers, I'd have to wait until I had a full two hour block or a ride from a friend (which I hate using because my physical condition necessitates way too many "favors" already) to go in in person and conduct my business. Moreover, there was still the issue of standing around waiting in line. So it had to be a day when I wasn't feeling shitty so I could stand in line for as long as might be needed. This is truly hard for me to predict with any accuracy, which means I may need to cancel a 24 hour in advance booked van ride at the last minute (something they frown on), cancel my request for a ride from a friend (thus "burning" a favor), or rally myself to get over there only to find I am too drained to wait as long as I need to in order to conclude my business. End result? What could be a more manageable aspect of my physicality becomes a disability with financial and education access repercussions (not to mention the emotional aspects of being told my physical status makes me unworthy of this "privilege" and of being totally thwarted in my attempt at self sufficiency).

I feel this should be the spirit of any law which is meant to address equal access for people with potentially disabling conditions. That is, the law should reduce disabling situations or disabling environmental properties. Not every physical trait can be predicted, although clearly some should be (limb use, sensory differences, and stamina being high up on the list), and thus the notion of "accommodations". So when a situation or environment is such that despite being accessible for the predictable varieties of humans who will use them, any good law should grant and ENFORCE access to accommodations. Certainly, no law is going to make me pain free, but if it's written right and enforced, it will make it so I don't have to choose between hurting myself and readily accessing opportunities and/or services which are available with what are at most only minor inconveniences for other people.

Thus, my limited understanding of how the language of the law has been interpreted is that it has had the effect of creating increased disability (with the definition of disability being one which includes the context of the person in his or her environment) by assuming an overly narrow interpretation of what it means to be traited in a way that makes you more easily disabled and what it means to disable.

I added a link to this blog which I have only had a chance to explore briefly, but it looks pretty good. It's an advocacy blog for the ADA Amendments Act. I'm looking forward to reading more on this issue and following it in the coming months.