prepping for your prep

So.  Bowel preps.  They suck.  Thankfully, the prep for the capsule endoscopy wasn’t super aggressive, i.e. I didn’t have to drink 4 liters of foul tasting gunk.

However, with any bowel prep, there is wear and tear, emphasis on tear in my case.  So I thought I’d post a couple of tips – most, unfortunately, learned the hard way.  As a bit of an aside, I think it would increase patient compliance with the prep if these tips or ones like them were discussed in advance rather than relying on the generic instructions given remotely to the patient.  E.g., my prep instructions were communicated to me via a not terribly well written one page instruction sheet sent by snail mail.  They left me with questions like “it says I can have a ‘normal breakfast’ the day before the procedure then switch to clear liquids after breakfast.  But I’ve been instructed not to eat breakfast – I snack starting at about 11:00 AM on things like rice crackers and yogurt.  What actual time does ‘after breakfast’ translate to?”  The last colonoscopy someone tried to schedule for me involved the doctor’s office INSISTING I do the 4 liters of gunk prep.  “But I really don’t handle large volumes of anything in my stomach well.  I’m worried I’m going to puke it up”.  They just gave me a script for two bottles, you know, so I could drink MORE of what made me vomit and told me to try to drink it slower.  Seems it was a one size fits all bowel prep, and the size we were using as the standard was an obese 65 year old man with poor kidney function and a history of heart problems (hence no more of the much more palatable Fleet Phospho-soda prep).

Regardless of what prep you’re given, there are some practical self care tips I wanted to share.

– Prepare your surroundings.
You need access to a clean, well stocked, well working bathroom.   Access means, if your surroundings allow, your own dedicated potty for the duration.  If not, then see “prepare your loved ones” below.  Well stocked means buy extra toilet paper – splurge on the soft stuff; some air freshener (I like the “pure citrus” brand ones); and I also recommend getting some wipes.

picture of a double pack of Charmin flushable wipes from Drugstore.com

Double pack - a good idea.

The wipes to get are usually found next to or near the toilet paper.  Charmin and Cottonelle make them, and there is usually a generic – I go with Charmin because it’s the one that doesn’t have Aloe (which I’m allergic to).  Although the packaging proudly declares that these wipes are flushable, I wouldn’t recommend it.  The last thing you want is a clogged toilet in the middle of your prep. To dispose of these, I recommend either something like the Diaper Genie or (if you don’t have one) a dedicated small trash bag that you will tie off and dispose of promptly when needed.  If you don’t have one already, a night light in the bathroom and en route to the bathroom is key.  You may end up needing to go after bedtime.  If you’re like me, you won’t want to turn on all the lights and wake everyone up if you don’t live alone.  But you’ll be in a hurry and hurrying + unsufficient illumination = fall-down-go-boom.  So get a nightlight (i’s a good idea to have it in general) or keep a flashlight by your bed.

– Prepare yourself.
Mentally and physically, you will need things to get through this intact – and oh yes, I do mean intact.  Mentally:  You’ll need something to keep your mind occupied and it’s best if you have something that is portable since you’ll need to take it on the road so to speak.  If you have an iPad, smart phone, netbook, or other portable device that will allow you to access media, plan to use it.  Stock it up with TV shows, movies, audiobooks, digital books, games, something.  You’ll be using it during your many stays on the toilet.  You can also just go the old fashioned route and get a book, some magazines, or a set of crossword/sudoku/etc. games.

picture of a sitz bath in place on a toilet

you can use the tub instead, but this is quicker.

For physical prep, look into getting a sitz bath. If you don’t use it during, it still might come in handy after if your delicate bits take a beating.

tube of A&D ointment

get some

I also cannot stress enough how important it is to use something like A&D ointment during your prep. I didn’t and ended up having to do sitz baths + vitamin E oil application for a week after on account of a fissure.  Fissures hurt.  A lot.  My post prep care includes sitz baths 2x a day (I’d do more but I really just can’t do this at work) and vitamin E oil (topical).  This has helped considerably, but it would have been better to have not needed to do that.  And this is what I get for being lazy about my prep.

– Prepare your loved ones/cohabitants.
The really nice thing for them to do is to not eat in front of you or cook food while you’re around and prepping.  The night of my most recent prep, as I worked away with resignation at my second clear liquids meal of the day, I asked my husband if he was going to eat anything.  “I did,” he told me.  “I surreptitiously scarfed down a pb&j wrap in the kitchen.”  It was so sweet that I nearly cried.  Unfortunately, he made up for that later by eating nuts in front of me…but truly, I don’t much like cashews so other than the mouth noises (which made my stomach grumble), it was pretty tolerable.  Which brings me to another point.  If you’re the meal planner, then either plan for the rest of the family to eat something you detest or, better yet, to just go out and get pizza.  The only rule is they must eat it all at the restaurant and NOT bring any home.  You don’t need that sort of appetite trauma.  I’m not going to get into what you can and can’t eat – that one seems to be covered relatively well by the standard bowel prep instructions given out by doctor’s offices or endoscopy centers.  I will point out that College Inn makes chicken, turkey, and vegetable broth in a box/carton package now.  This was much more convenient for taking to work to heat up for my clear liquids lunch (microwave in coffee mug).

Another important part of preparing your loved ones and/or people you otherwise live with is to make it very clear that you require “dibs” on the bathroom if there is only one.  They need to check with you before going, and they need to make their use snappy.  No lingering about.  If you have evening showerers in your home, I recommend that they take their showers PRE-prep.  And lastly, while it might seem like a good idea to plan a movie night or to watch shows during your prep (because you’re stuck at home and going for a bike ride or even a walk around the block is not an option), keep in mind that you’re going to be up and down a lot.  My husband and I came up with a sort of protocol about pausing the movie we were watching, but still, it became pretty evident that I just wasn’t going to be able to watch this movie unfragmented.  Accept that in advance, maybe pick something you’ve already seen but don’t mind watching again, and everyone will be happier – believe me.  Lastly, no calls.  If you have the kind of touchy family that I do, maybe let them know that you will be indisposed that night so they either won’t call or won’t be offended if you don’t answer.

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weighing in

I had lost ten pounds between late February and early May.  This isn’t new, thanks to my truculent intestine, from September 2004 to March 2005, I lost 30 pounds while eating nearly everything in sight.  Now that it’s better controlled, I can usually stay around my normal weight, sometimes losing a bit if I’ve had nausea and abdominal pain which makes it harder to eat my usual large amount of food to make up for the loss on the other end.

However, this spring – despite having a very good appetite, I lost a lot.  I called my GI doctor, thinking I’d try to move up my follow up appointment to a little sooner than June 10.  Whoops, no I didn’t even have an appointment on June 10!  So they gave me the first one they had, June 3, and increased my meds.

So this week, I’m premenstrual and tremendously bloated, my appetite’s been insane (I feel dizzy and weak and nauseous if I don’t eat about every two hours), and the gut meds – while not working to slow things down fully every day – have helped.  The end result is I’m back up about 8 pounds.  So I’m going to go in there and she’s going to pronounce me “CURED!”  Ta da!

I probably should just get all that sarcasm out here, now, before the appointment.

Gah.  Anyhow, I need to push on with her though.  The symptoms were bad enough that I was *very* late for work about 6 times in that weight loss period.  This needs to stop.  And I know it might not stop.  I know we could look and look and not find a reason; or look and look and find a reason but not a cure or even a sure fire treatment.  I don’t love those outcomes, but I think I can accept them.  I know I can accept them a whole lot better than I can accept simply not looking.

As I write this, I realize though that there’s no clear reason, a priori-ly speaking, why not looking should trouble me so.  I think it has to do with this:  I have a fundamental problem with wallowing in a shitty situation – with having troubles which lead to complaint, need for accommodations, what seem like extreme limitations.  I guess I’d say I have a problem with “malingering”.  I big, deep problem with it.  Now, what I don’t have a problem with is disability due to circumstances that just can’t be fixed or modified sufficiently to allow for approaching normal function.  Put those together and it means that I absolutely require that all reasonable avenues be exhausted before I am ready to throw my hands up and say “fine.  I give up.  I’m fucked.  Now I can get to work on guiltlessly rearranging my entire life to accommodate this fuckery.”

I think a key element in here is “guiltlessly”.  And the recognition that my entire life includes the people I interact with – obviously the more frequent and/or intimate the interaction, the more need there will be for rearranging and accommodation.  I’m working on this in the meantime.  I don’t assume a diagnosis, treatment, or cure is forthcoming for any of the more debilitating crap.  But I know that I simply will not feel comfortable entirely giving in unless I truly feel that no stone has been left unturned.  To continue with the masonry metaphor, I’m not insisting that a doctor dig out a whole new quarry here – just that s/he use the reasonable tests and tools (which I assume includes their god damned brains and my very thorough medical records) to chip away at what we’ve got.

You can do it!

I find that I have taken to coaching my intestine.  Only when I’m at home.  Like today.  It’s a vacation day….much needed after a busy early May at work.  And I want to go out and do stuff.  It’s gorgeous.  Sunny, high of 70.  But my intestine, which was oh so very forthcoming earlier this week, has decided to dig in its heels (there’s an interesting metaphorical image) and be recalcitrant.  I’ll get out and then it’ll decide to wake up and start it’s daily work out – something like the Rocky training montage except it involves me running to the bathroom every 10 minutes for about 1.5 hours.  For now, it’s basically sulking, lolling about like a sleepy, cranky toddler.

I have an appointment with my GI doc next week.  This is the big “will you or won’t you” talk.  As in “Will you do the capsule endoscopy you said you’d do in the Fall or won’t you?”  Her nurse told me that she’d rather do another colonoscopy (she didn’t do the first one, someone else did but it was fine) because she can biopsy in a colonoscopy.  I understand that.  But *no one* has taken a look in my small intestine.  So I deal with the diagnosis of exclusion (IBS) without having excluded a small bowel diagnosis.

This would be more acceptable except that (a) I’m still malnourished and the meds work for a while then seem to wear off.  We then increase the meds which works for a while, then wear off…etc.  and (b) she said she was interested in the pill camera study last Fall and even had me do a CT scan to make sure there were no strictures in advance of it.  There were none.  So….what I want to know from her is why did she put me through that much radiation and nauseating contrast (not to mention the expense) if only to decide 6 months later that no, we won’t do the capsule study.

Actually, although I do want to know that, I suspect framing it like that will just sour our relationship.  So I will probably ask what the risks vs. benefits of a traditional colonoscopy are compared to those of a capsule endoscopy.  And if she’s still reluctant to let go of the colonoscopy, I may go looking for a new GI doctor.  I’m pretty sure she could be convinced to go the capsule route, but if she agrees only to humor me and is still set against it, I think I should find someone else because I’d worry that she’d develop some kind of negative attitude towards me as a result of this wrangling.  And I have a low tolerance for the sorts of negative attitudes doctors get in situations like that.  I’m very sensitive to them (ok, I’m basically hypervigilant about it) and I have yet to find a good way to handle the bad feelings they elicit in me.

Let me say for the record that I don’t want to go to a new GI.  I’m already changing primaries and spent February and March looking for a gynecologist.  Going through the whole new doctor thing sucks.  However, I did do some research and there are two folks at one of the BATHs who specialize in diarrhea and GI/women’s health issues.  So there are some options perhaps.

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.