Sunday, January 31, 2010

The Male Health Scale

Being a male and having a broken butt for almost two decades, I've determined a method for gauging how well I'm feeling:  How often do I get to pee standing up?  Even when I was sick in college, we would celebrate a standing urination as it would appear only once, maybe twice a semester.  [I have a feeling being a little "out of our minds", we tended to celebrate odd things.]   Since having step one surgery last year, it has become rare, but not unheard of.  Over the course of the last few months, muscle control has definitely increased for me to sometimes separate the two; although, dealing with the pain and loose movements, it's been tough over the last few weeks.

The double dose of steroids has definitely helped this week.  The pain no longer appears in the afternoon and there's only little discomfort around dinner time as things get active while I eat.  The mornings have been better as well with being able to delay my first movement until almost lunch and enjoy standing morning relief.  As expected, the cortisone seems to be working, but there's also the concern that it's just masking what is really wrong.  As a friend of mine put it, "Football players can go out and play with a broken foot on cortisone shots."  I'm not willing to prove his theory, but I tend to agree it's a valid comparison without the pads, contact, and ridiculous paychecks.

The edema is starting to set in slightly again, most notably in my face.  No cankles yet, but the wedding ring came off yesterday just in case.  As noted by the time of the post, sleep is also starting to work it's way out of my system as well, similar to last time.  I've gotten used to having to take multiple enemas a day, but not sleeping is something even for this insomniac that is starting to take it's toll on my psyche.  If I had to swap in not sleeping for being rid of pain, I'll take that as a step in the right direction.

Mood swings are in full effect as well, and with the full moon, it seems like the whole house is cycling with me.  That makes for a very volatile combination and some very frazzled nerves.  If there is anything that I've learned over the last few years, it is to not forget your caregivers feelings.  They may not be going through the same aches and pains as you are, but they are still heavily emotionally invested into your well being.  If you aren't doing well, neither are they.  They tend not to complain about it, but they are still feeling it.  Take the time to appreciate and acknowledge your caregivers:  No matter how bad it is now, it would be a helluva lot worse without them.

Tuesday, January 26, 2010

And I'll Raise Ya

I just got back from my followup appointment.  The pouch is still inflamed (which we already knew).  They doubled my steroids back to where it was just before the holidays with the hope to shock the shit out of it again, hopefully this time for good.  Another three week course to see the reaction.  If this doesn't work, we'll be in for at least another CT scan to look for collections (and not ones with keys and values.)  Not much else to say other than hopefully this will get me off the pain and pain medication as well.  Tomorrow starts the double dose and off we go.

Thursday, January 21, 2010

Staying on the 'Roids

The pain hasn't really subsided, and the witching hour is still arriving in early afternoon.  [That's right about now.]  As part of the taper, I went without the cortizone on Tuesday, to only wake up Wednesday still in pain.  So the cortizone is definitely assisting with the pain or healing or covering something or...  As a result, the doctors decided to stay on a daily dose once a day for another three weeks to see how this affects the pouchand pain.

Thankfully, the pain is handled with only 1/2 percocet: I respond really well to those, but it takes about 45 minutes to kick in.  I struggle through what I can in hopes that it subsides.  The docs want to stop the percocet intake and use Motrin instead to handle the pain.

Followup is still for the 26th next week, so we shall see how the steroids continue until then and possibly get an idea for what we can do to find out what is causing these issues.  Unfortunately, this only further delays getting back to "normal", whatever in the hell that means nowadays.

Sunday, January 17, 2010

Not Much Changing

Just a quick update, but not much new news.  I'm still having pain in the afternoon/early evening, typically as the pouch is filling up.  The tailbone pain stays even after evacuating, so it's obviously not the pouch that is causing all the pain.  The pouch does start to get irritated as the day progresses, but having to take oxy to get the tailbone to calm down slows the pouch down (that's a double win, btw.)  Somehow a feel another scan is in my future, even if I have to suggest it:  My gut tells me there's a buildup like after the first step that isn't going away.

The nightly steroids are hit and miss from a pain standpoint.  I started to take earlier in the night, and just stay up to have my final "clear" of the day.  This translates to somewhere around midnight/1 AM, but I get to sleep straight through until 6/7 AM, which is awesome.  I haven't slept that long in months.  Going to bed late, plus taking the oxy in the afternoon leads to a nap in the afternoon, which is all fine by me, as I've really needed it lately.

Next followup appointment isn't until the 26th, so patience is required until then, but the pain dissolves that fairly quickly. 

Sunday, January 10, 2010

Coming Off The 'Roids

I've been on one dose of steroids per day since Tuesday and already noticing a difference:  Unfortunately, not in a good way.  The tailbone pain started back almost within the day and typically occurs whenever the pouch is reaching capacity.  I guess that's a nice sign (who doesn't love the fuel gauge in their car), but the pain is debilitating to the point of having to lie down, even after evacuating.  The pouch itself is also starting to have pains, similar to where we were back in December.  Thankfully, the bleeding has pretty much stopped completely, and have noticed little to none on most days.

I've lost most of the water weight, shedding 13 pounds in 8 days after the new year:  Yes, I was drinking a ton of water and yes, even moving more.  My clothes fit more like they used to, but now my pants want to fall off (what can I say, no butt.)  I 'think' my current weight is around 139, which is up from the pre-steroid weight by a pound or so.  Any true weight gain is good at this point, especially if it's not just water.

Diaper rash: It's not just for kids anymore.  I think I posted a while back that this is the reason babies cry:  I'm formulating a pretty good theorem around this now and am positive that's the reason.  This is the 2nd bout with a rash and still unsure where it's come from.  Nightly incontenance has been limited to only once this week, so not sure that is the reason.  I may be having an external reaction to some of the steroid that has a tendency to leak.  Holy crap does it burn!  I love me some A&D.  I've moved away from the Zinc Oxide, as every time I try it, I seem to get the rash as well, so I'm concerned there may be a reaction to that as well:  That would be a real drag, as everyone swears by Calmoseptime, which is a highly concentrated Zinc Oxide cream which supposedly works wonders for butt burn.

As expected, coming off the meds was going to have an impact, just not sure to what degree and what direction.  We're holding steady to see where this little journey takes us over the next two weeks as we continue to ween off the steroids, but stay with the antibiotic.  Cautiously optimistic is the best description for right now, especially as the steroids work their way out of my system.  My doc isn't in a hurry, and neither am I, so slow and steady will hopefully win this race.  Unfortunately, my work is becoming less patient.

Thursday, January 7, 2010


"My coke for gin"... Thanks Roger.

Being that I've up my sugar/carbohydrate intake, we thought it would be a good idea to mix in some sugar-free items to not overdue it.  I'm not sure if you've ever tried the sugar free alternatives, but they are amazingly good.  As I started with just one cookie, I couldn't stop... And didn't realize until I had consumed more than a few servings.  It was at this point my wife mentioned that having too many could actually cause diarrhea.

Go figure, right there on the back of the package:  "Excess consumption may have a laxative effect."  Uh oh, that's no good.  The "may" part of that sentence was true for about 15 minutes, at which point it quickly turned into "will".  The only upside was that by the time I could finally get to sleep (I wasn't risking sleeping before empty) was that once I laid down, I didn't have to get up in the middle of the night.

The edema is continuing to wear off (last night helped I'm sure) and I've been dropping weight like a sweatsuit.  Since New Year's, I've shed from ~150 to ~137.  If you thought I looked swollen before, I look much better.  If you thought I looked good before, I look much skinnier.  I'm not sure where this freefall is going to stop, but I know I'm less than I was when I went in and is gonna take a few more months to get back to pre-step 2 weight.

I've been experiencing tailbone pain since early in the week, mostly buried in the coccyx.  It feels like getting drop kicked by Paul Bunyan.  A heating pad seems to calm it down, but walking/sitting/lying seem to aggravate it.  We're keeping an eye on it and make sure there is no abscess building up behind it.  Bleeding has been limited to maybe once per day since Monday night, which is good:  Having blood exist outside your body or leaking from any orifice is discomforting and most likely unhealthy.

Love only having the steroid once a day:  Seems I've traded one pain for another!

Tuesday, January 5, 2010

Followup #4 Post Takedown

Had the first followup today post scope with the surgeons to check on the progress and determine where we go next.  They were happy with the result of the pouch, but still keeping a cautious eye as I'm still on the drugs.  They have started to ween off the steroids (thank you very much) but will continue with the Cipro for a few more weeks.  My next followup won't be until the 26th and they are not releasing me for work detail yet.  They are still concerned about my strength and the various bleeding that is accompanying some of the movements.  They know it's healing, but it's not healed:  I don't think they want to break a good thing.  Progress.

The drive back from the hospital was a little uncomfortable and I've been having tailbone pain all evening.  It's enough to warrant a percy to try and make it tolerable.  I haven't been in a car that long since my last followup and I remember not being real thrilled about that trip either (although, I was drugged up from my scope so I don't think I minded as much.)

The past week has progressively getting better:  The movements have been less - around 6-8 a day.  I only get up twice a night, typically around 1-2 AM and 4-6 AM.  I find that once I'm up the second time, I'm up for good, which makes for really long days.  Napping comes and goes, depending on what the steroids allow me to do.  I've been having blood only in the evenings and typically just with one or two movements.  That is significantly better than a few weeks ago, so that makes me very happy. 

I've been adding more foods to my diet, most notably carbohydrates (oh yeah.)  Each day the body seems to tolerate more and allows me to indulge in some foods that I miss, most notably chocolate.  I'm still avoiding all other dairy, which hasn't been bad by mixing in rice and soy based products, which I think are just as good and even better for you.  I'm still avoiding coffee, safe a few sips, but found some great no caffeine tea that I sip instead of water throughout the day:  Man cannot live on water alone!

My swelling is also subsiding: I've been losing about a pound a day in just water weight.  My kidneys are happy and so are my ankles.  I've lost most of my jowls, but my tummy and knees are a little swollen.  It's tough to track progess now based on weight, as I'm see-sawing on the drugs.  I've pretty much given up on the scale for now and will wait to come off the cortisone for good.  My mobility has been good, but twisting puts some stress on the ab walls which don't typically bother me, but let me know if I've gone to far.  I'm still not driving much, although now that I've been experiencing my wife's driving more frequently, I may start (sorry honey!)

As I've been saying, the location could be better, but the direction is good.  It's a slow process, and everyone knows I'm not the most patient man, but there isn't much choice, so I concede.  Thanks to all that have been sending vibes, prayers,  and thoughts:  They mean a lot to me and the family and make the journey easier.

Friday, January 1, 2010

Happy New Year

If you're going to go out with a bang, you might as well do it with a bang.  Yesterday was a food filled festival, capped by copious amounts of junk food and even a glass of champagne to ring in the new year.  This is the first year in a decade I did forego the drinking agenda and decided to eat instead.  I guess if I'm going to have a vice, eating isn't such a bad one, although I'm wondering if the pouch is going to agree with that agenda.  Certain foods that bothered me before are slowly getting better, although dairy is still non-existent.

Thankfully, (so far) the pouch is tolerating the sugar, steak, starch feast.  The steroids are limiting my sleeping to only a few hours a day, but at least it's a few consecutive, which was more than before.  Daily trips to the bathroom are limited to between 6 and 9 a day, which is less than before and control has gone up.  Unfortunately, there is still some bleeding, but not sure from where:  Hopefully we can get an answer on that on Tuesday.

Nighttime incontenance is down to only a few nights a week, rather than daily, but I recently found why infants cry for no reason... Diaper rash.  A little goes a long way and doesn't go away over night.  A&D is the new healing potion, but unfortunately they can smell you coming.

Here's to 2010 being better than 2009.  I say that, almost tongue in cheek, because depending on how you spin it, I might not get exactly what I'm looking for!