on waiting it out

No sooner had I convinced my poor parents that waiting it out was the best plan of action than I had another major attack.

I have had a somewhat intense past two days at work, but I don't presume that to be the cause.  I am further baffled by which of my meals during the past 48 hours could have caused such dramatic upset.  Leftover cauliflower soup, tuna/crab sushi, egg, toast.  These are all foods I've eaten before with no direct consequence; they have all only been associated with pain via the Weekly Throughput, save for cauliflower.  I have, however, had three small servings of pureed cauliflower soup since Sunday, so perhaps it was the cauliflower...

This was a fairly sudden attack, as they go.  I was fine the whole day until a few minutes before I stepped onto the bus home.  I then spent the next 45 minutes starring stiffly into the pages of Copernicus' Secret trying not to appear cracked out or release any agonizing noises (from either end).  I think I turned two pages for the sake of appearance, and read none.  This was an attack similar to the ER episodes of this flare; waves of climaxing and waning pain that lasted less than a minute each.  The difference with this episode was that the pain was not only in my lower middle abdomen (where my small intestine is clean as per Dr. S and obstructed as per Dr. P), but also in my left large intestine (the new locale that entered the scene just before my SBFT, and about which neither doctor said a thing), and more subtly all throughout my bloated abdomen. 

So I did it: I road the bus all the way home in peak rush hour traffic with an attack.  I did, however, call H.B. upon reaching the park-and-ride and ask him to ready my heating pad so that I could immediately apply my favorite antidote upon walking through the door.  He also served me a bit of prune juice with some oxycodone (my first dose in three weeks).  I have no idea how I have come to be so lucky as to call this man mine, but I call dibs forever.

The wait-it-out plan is still in effect, and will not be diverted from due to this unexpected episode.  The reason is this: I want to know what Remicade's potential is for me.  I want to get off the prednisone and see what Remicade can do for me without the aide of steroids.  I want to continue on purinethol and Remicade together so that I can observe any helpful effects of the additional immunosuppressant (which may be protecting me from developing antibodies to the Remicade itself).  After the 5th infusion, I want to stay on Remicade alone for a few more to observe my reactions and how my symptoms change, even if they do not "clinically improve."  These observations are important to note before I start reintroducing supplement and dietary interventions (my original plan of action).  If my baseline level of pain remains at this slightly higher constant, and if I continue to have weekly intense attacks, that is important to find out as well.

With the help of H.B., oxycodone, my hot pad and some Mythbusters, I enjoyed a bit of chicken and rice with soy sauce for supper tonight.  I'll be alright.

the reluctant forfeiting of my faith in medical appraisal

Alright, I'm done.  I will keep weaning off the prednisone, as laid out in the original "plan"; I will keep taking the purinethol until after my fifth remicade infusion, as dictated; and I will continue on the remicade infusions until my body has a negative reaction.  After that, I'm done.  I'm shifting therapeutic intervention to the shoulders of diet and supplements... and I'll use my doctor for more dire incidents... such as a referral to a nutritionist that my insurance will cover. 

If you have not already supposed, tonight's sardonic ramble is in honor of finally hearing from Dr. S after his month-long hiatus.  I had left a message requesting that Dr. S look over my now-two-week-old SBFT and interpret the next appropriate treatment steps for himself, knowing so well as he does my history (refresher).  The point of this request, my friends, was to hone in on taking steps forward in figuring out what exactly the intestinal obstacle is here, and how to work through/around it.  I thought this was fairly reasonable to ask.  Apparently, I am gravely mistaken about the directives of palliative medicine.  Apparently, it is much more efficient to take steps backward, as long as so doing is sure not to increase medical malpractice premiums.

Dr. S's nurse called.  He wants to know what my current symptoms are.  Oh good, so he's going to make the connection that I made two weeks ago (see refresher) and assure me that this is clearly not a job for prednisone anymore, that remicade should kick in in seven more weeks and that until then it is important to stay on the purinethol which is still doing at least something helpful? (it is).  Apparently, he is not.

The most pressing component to the last five weeks of my condition's development, in my renowned doctor's eye, was actually not the new stricture in my small bowel (which he didn't seem to think was there, btw), nor the constipation (which could easily be explained by the PPR cocktail), nor the continued abdominal pain (although significantly less frequent than four weeks ago... I did an ANOVA...).  No, no -- in fact, the silver bullet onto which my doctor has latched his clearly very personal ambitions for my recovery... is prune juice.  Indeed, the very prune juice I informed him that I have been drinking for the last two weeks despite the overwhelming sugar content, which causes problems of its own.

"Dr. S recommends that you increase the number of times a day you take the prune juice. Maybe try it 2-3 times a day and see what happens?"  The poor, tired voice on the other end of the line tries to redeem some thread of medical integrity from the doctor's message.

"Well, what happens when I drink 12oz a day instead of 6oz is that I induce a Throughput episode on a pain-scale rivaling the one that put me in the ER when this began 3.5 months ago."

"Ah... well, let's keep it at 6oz, then."

"Right-ee-o."

I would have been totally cool with this discussion had it included any pharmacologically relevant reassurances such as those posited in the preceding paragraphs.  It really doesn't take much to please me -- he didn't even need to give a correct diagnosis; all I needed to hear was some kind of medical reasoning or postulation and I would have been on cloud nine because he turned a scientific(esque) phrase.

And so, you see, I'm done.  Certainly not with Western medicine, because it gives me the tools to interpret my condition.  I'm just done taking my doctor seriously.

By the by, the Gastroenterology and Hematology department doesn't know of any nutritionists within the System who specialize in IBDs... but they suspect there are several who have IBDs patients all the time. ... Is there a reason they can't look into this for me?  I'm not sure I can think of one.
In all fairness, I am showing continual improvement in the pain and food-variety departments, it's just somewhat masked by all the other effects, some of which I can explain away and others I can't because, well, I'm not a gastroenterologist.

SBFTs and Poor, Confused Gastroenterologists

I'm having fun.  And more importantly, I think the hospital is having fun.

The results of my SBFT are as follows:  Dr. P sees strictures in the small bowel, but they aren't very tight, so he's not concerned that surgery is imminent, but he is concerned if I are still on 40mg/d prednisone... (which I am) 

The problems with this response are as follows:  1) Dr. P is the on-call doctor who is the surrogate for Dr. W who is my not-on-call surrogate for Dr. S who remains incommunicado until next week.  So basically, I have access to nobody who has a "complete" understanding of my history.  I may not be a doctor, but I was close enough to becoming one  four months ago that I can tell you that medical history is kind of important when interpreting the results of any medical test.  Sorry, that's just how it works.  2) Since Dr. P followed up his interpretation of my SBFT with the questions, "are you still on prednisone?" and "what are your current symptoms?", I have deduced that being on-call he did not feel compelled to look at my history before telling me what my SBFT meant.  Therefore, I can more accurately tell me what my test means than he can.  'Ya ready?

My interpretation is as follows:  I think that I was correct in predicting stricture(s) of the small bowel based on the observations that the location is new, and that the pain has been persistent despite the prednisone, which, were this a normal inflammation would have slaked the flare and turned it to scar tissue.  I think that the very slow evolution of nausea/emesis/bloating since April of this year to incredible new pain/back-up supports the idea that a stricture has been developing.

"Patients may not know that they have an intestinal stricture. The stricture may not cause symptoms if it is not causing significant blockage (obstruction) of the bowel. If a stricture is narrow enough to hinder the smooth passage of the bowel contents, however, it may cause abdominal pain, cramps, and bloating (distention). If the stricture causes an even more complete obstruction of the bowel, patients may experience more severe pain, nausea, vomiting, and an inability to pass stools." (1) 

I think that Dr. P's suggestion that I begin tapering off of prednisone is excellent, considering how long I've been on it and how little it's done to help the problem.  Finally, I think that Dr. P's suggestion that I go back on "soft foods and liquid diet and see if that improves things" is bullshit.  Had he looked at my recent history, he would have seen that I just started reintroducing solid foods, and he would have made the connection that it was probably not a good idea to tell me to take a step backward without suggesting how to help me move forward.  Am I wrong? 

Disclaimer: I know that being a doctor is hard.  I know that insurance companies and Big Pharma have infiltrated the world of medicine in the most destructive and back-breaking ways.  I know that 90% of a doctor's non-patient time is spent dealing with the utter nonsense draped before them by the two monsters that dictate the way they practice medicine.  However, I have absolutely no tolerance for the inability to take ten minutes to figure out what is going on with the patient before making a diagnosis.  The Bernstein paper I cited the other day says something about SBFT's being so ancient that very few are read properly unless they are read in a radiology center with a SBFT specialist.  This observation in concert with Dr. P's seemingly confused and half-assed diagnosis... has me concerned.  But I'm having fun.  Truly.

In other news, this is Lamar.  Due to the extrusive nature of the PPR-face this year, he is part of my Halloween costume.  What.

Tofu, Squash and the Microbial Squadron

In the quest to ween off of the short-term friendly diet base of breads and rice, I am finding two things:

1) My allergies dictate that a myriad of exceptions from the rules be formulated, and

2) These diets -- particularly the ones that are based on moving away from modern food-preservation and agricultural technology -- are far too nit-picky for my stress level.  That is fantastic for people who can and/or need to be that scrupulous with what they put into their bodies (often Coeliacs and Rheumatoid Arthritics, both malabsorption-centric), but not for me.

Current quests: 

1) to replace most rice noodles with various stringed squashes, and

2) replace most breads with tofu.

Current obstacles:

1) If my SBFT results come back rampant with strictures, I will not be able to eat stringed squash, and

2) tofu is "illegal" on the SCD diet (my guiding reference).

Current absurdities:

1)   Spaghetti squash is high in complex carbohydrates.  Why is it on the SCD diet if this is so?  Because these complex carbohydrates are not starches (2), the favorite sustenance of the microbial squadron.  Therefore, spaghetti squash is excellent for the SCD diet, but not so excellent for me... in terms of making it through my system, rice noodles are better.  Sacrifice the carbohydrate eradication or risk intestinal rupture?  This is going to involve a very slow process of replacing carbs with fiber one food at a time; elsewise, my poor brain will not be able to suppress the hormonal onslaught of PPR-bred anxiety.

2) The reason that tofu is illegal on the SCD diet is because of the ambivalence of its carbohydrate content.  Apparently, no one has bothered to figure out what carbohydrate prevalence results from the fermentation and processing of the genetically manipulated soy beans that beget tofu.  My condition at the moment is more defined by "solid substance sensitivity" than by my concern for entirely starving out the microbial forces in my gut (see above).  Therefore, the carbohydrate content of tofu being so minimal as compared to its protein and fiber content -- even as its carbohydrate chain specificities are unknown -- I will allow it.  I simply can't afford to eliminate everything by-the-molecule, only to reduce.  Baby steps.

Additionally, screw complete elimination of rice because if I cannot eat sushi once in a while life is just not worth the hassle.

On MRIs, Small Bowel Follow-Throughs and CT Scans

Dr. W is apparently my surrogate GI until Dr. S is back in town.  He is concerned about my symptoms (the Weekly Throughput and ossified left intestine), suspects an obstruction (stricture, fibrosis, or scarring) and wants to do a small bowel follow through.

At this point, I realize that without these magnificent instruments of medical speculation, I really have no freaking idea whether the left side distension/rigidity is my sigmoid colon or duodenojejunal flexure (the former being almost directly anterior to the latter).  I also have no freaking idea what's going on in my Prednisone-resistant mid-lower small intestine.  What I do know from historical diagnosis is that I have ileal obstruction (on the right side) which has been fairly reticent during this flare; not particularly helpful in addressing the small bowel pain and left side distension/rigidity.

In the last two months, I've been recommended an MRI, a CT scan, and now a small bowel follow through (SBFT).  The first two were suggested by Dr. S, the last by his surrogate.  The reason endo/colonoscopies are not on this list is because they have shown zero new information about my new symptoms as they have developed over the last eleven years.  Endo/colonoscopies don't span a great breadth of the intestinal tract (endo goes down to the duodenum, colono goes up to the top left juncture of the descending colon).

For those who are equally confused as to why their GIs can't make up their minds about which procedure is best for diagnosing which kinds of Crohn's or IBD symptoms, below is a compilation of my findings.  The general concensus seems to be that SBFT are more accurate in identifying strictures, and MRI and CT are better at identifying fistulas, abscesses and active inflammation in deep tissue.

In a study comparing MRI and SBFT (Bernstein et al 2005):

"SBFT revealed additional information in four [patients], including a stricture (none found on MRI, n=1), jejunal site of obstruction versus unclear site on MRI (n-1), and ileosigmoid fistulas (n=2)."

"For tight strictures, SBFT gave information on number but did not delineate findings between the strictures, or on extramural disease.  Obstruction and stricture detection was comparable but characterization was more detailed with MRI."

In a study comparing MRI, CT and SBFT imaging of the small bowel (Lee et al 2009):

"The mean number of bowel segments other than the terminal ileum with active inflammation per patient was slightly higher as detected by using CT enterography and MR enterography than it was as detected by using SBFT.  However, these differences were not significant.  The level of agreement between the readers was excellent for CT enterography, MR enterography and SBFT."

"The low level of agreement observed for SBFT may reflect inherent disadvantages of this technique, including incomplete evaluation of bowel segments located deep in the pelvic cavity owing to overlapped bowel loops and suboptimal evaluation of the small bowel distal to the tight stricture (10, 12, 32)." (Note: The paper doesn't specify how the SBFT were conducted, but I know that during this procedure they have the option of pushing your guts to one side or another to get a better image if they want to, so in my opinion this observation is inaccuate)

"CT and MR enterography were more capable than was SBFT of depicting extraenteric complications of CD, including fistulas, sinus tracts, and abscesses.  Although our findings are consistent with findings in most previous studies (4, 10, 12, 33), conflicting results have been reported for the detection of enteric fistulas and sinus tracts (4, 10, 33).  Bernstein et al (10) compared MR enterography and SBFT in 30 patients with CD and found that SBFT allowed identification of two ileocolic fistulas that were missed using MR enterographic images."

In a study looking at the accuracy of CT enterography preoperative diagnosis in the small bowel (Vogel et al 2007):

"For the 36 patients, the presence or absence of stricture or fistula was correctly identified by CTE in 36 (100 percent) and 34 (96 percent), respectively." (Note: Since "preoperative diagnosis" can be assumed to refer to the presence of a stricture, I think it is implied, here, that the CT scan is an accurate way to identify small bowel obstruction.)

"SBFT is accurate in the prediciton of fistula, stricture and mucosal abnormalities with specificity and sensitivity reported in the 85 to 95 percent range (MacKalski & Bernstein 2006)."

"In the 18 patients with one or more strictures, CTE was correct for stricture number in 12 (67 percent)."

A review of Crohn's disease imaging advancements (Grand 2009):

"The small bowel series and barium enema are essentially historic examinations for the detection and evaluation of inflammatory bowel disease.  These studies, while effective at detecting mucosal abnormalities, are poorly tolerated by sick patients, provide assessment only of the bowel lumen (particularly the mucosa) and are physician dependent, limiting their reproducibility.  A properly performed and interpreted SBFT or BE is unfortunately a lost art..." (Note: Again, SBFT seems accurate for identifying fibrosis, but not deep tissue inflammation in active Crohn's)

"The ability to assess disease activity is probably the most important advantage of MRe over CTe.  Clinically, it is often difficult to distinguish between active and chronic changes of inflammatory bowel disease in symptomatic patients.  This distinction has become increasingly important with the advent of new, boilogic therapies for active inflammatory disease which, while extremely effective, are expensive and may also be potentially toxic.  Although beneficial for patients with active inflammatory disease, these agents do not benefit patients whose symptoms are secondary to a fibrotic stricture.  Rather, these latter patients will require surgery for symptomatic relief" (Note: Since I am currently on biologic therapy, it's pretty important that I be able to figure out whether the last three Remicade infusions were not even necessary.  If I end up needing surgery for a stricture as Dr. W suspects... I'm going to be pissed that Dr. S put me on the PPR combo so hastily.)

"Because negative contrast is used for CTe, small abscesses may be difficult to distinguish from loops of bowel and regular CT or MRe should be employed if abscess is suspected or in the immediate post-operative state." (Note: In agreement with Lee et al paper)