One Year Anniversary and Progress

My, how time has gone by:  One year ago, I was waking up with an NG tube stuffed down my nose, a brand new temporary ileostomy, a belly full of lapo sites, and terrible pain in the abdomen and the rectum.  I didn't expect the recovery from the first surgery to be as rough as it was - This would be true for the second as well.  Those first days were critical in a mindset change that this journey is not going to be easy and positive thinking will be my greatest asset.

I'm not going to try to list highlights of the last year: Every day had something new to offer, some good and some bad.  At the end of it all, pocket fulls of lessons and learning.  Other than acknowledging the time past, dwelling on a single day (much like a birthday) seems to steal the importance of the other 364.

I had a followup appointment last week to see the progress since the last procedure of cleaning the abscess.  The pain has subsided greatly and tailbone pain is non-existent.  There is still pain from time to time in the rectum (possibly the sinus?) but only a little and not often.  The steroids are down to every other day and likely to be off with 7 days.  Doctors noted the inflammation has also subsided and things look to be progressing as expected.

I have another (and hopefully one of the last) followups on the 9th of April:  Should everything be healing as we expected, at that time we determine a back to work (and a back to golf) date.

Moving Right Along

It's been over a week since the procedure to address the abscess and there has been a slight improvement.  We cut the steroids in half, which has lead to daily pain in the tailbone and rectum.  This usually starts in the late morning or afternoon and continues until I crumble and take a percocet.  Thankfully, it hasn't been as bad as it was the previous two times that we cut the steroids.  The hope is that this means the abscess is healing, albeit slowly.  I'll be thankful to be off those god-foresaken drugs, even if they have helped me.

My appetite hasn't diminished (still eat like a linebacker.)  I'm sleeping a little better, but that fluctuates on a daily basis and usually results in morning or afternoon naps to catchup on lost sleep.  I've started walking again, now that there isn't 30 inches of snow on the ground and 30 degree weather.  Exercise does increase the movements of the pouch, which is true for all persons, just that it's a little more drastic with me.

I have a followup on the 19th to check the progress:  At this rate, I don't see the abscess or the sinus healing by then.  My assumption is we'll do another gastrogafin (yeah) to verify the progress.  As long as we are headed in the right direction, I'll take it!

Tubeless

I had my procedure yesterday to clean out the abscess.  The doctor noted the presacral abscess was smaller than we originally saw last week, which means it looks to be on the mend.  The sinus into the actual abscess was smaller than a straw and actually too small for him to put a drain:  That's even better news, as I don't have to deal with rectal tubes!  The inflammation in the pouch has also receded, so it seems the pouchitis (or what we thought was pouchitis) is getting under control.  As a result, we are also tapering the steroids.  Good news all around!

Since the gastrogafin last week, the pouch and the abscess have felt much better.  Other than taking narcotics yesterday after the scope, I've been able to go through most days without pain.  Maybe the barium pressure washer actually blew out the abscess and lord knows what mess had been hiding in there.  (Sorry, no pictures.  I'm disappointed, you can count on that.)  It's obviously clean now!

We will be monitoring the abscess over the next few weeks to see if it continues to heal and close on its own.  If that does not happen, we'll have to deal with surgery and restitching, but those are bridges we'll cross if/when we get to them.

What's For Dinner?

We met with the surgeon today to determine the course of action and how to address the abscess.  Thankfully, the procedure is not as major as originally thought, and the procedure on Monday is more of an examination than a surgery.  They are going to drain the abscess and better determine it's size and inflamed area.  There is a very good possibility they will leave the drain behind; although, that's hopefully a minor inconvenience.  [I've never left a hospital with a tube in my rectum, so let's hope for "minor".]  He also feels the overall "pouchitis" that I've been experiencing and seen via scope is a result of the abscess and it's inflammation.  If this is the case, then curing the abscess will also resolve the pouchitis.  This would be a major bonus, as then I could get off the antibiotics at some point as well.


The downside to this is this may not be the end of the road:  Depending on how the abscess responds and heals, this may be the first of other possible procedures.  We will address those when the time comes, so no reason to stress about those now:  Positive thoughts breed positive results.

Pedal to the Metal

Today I had the gastrografin x-ray to check for the size and location of the abscess.  I had this procedure once before just prior to the reversal (stoma takedown):  It was only slightly uncomfortable then, as the stoma was the entrance point for the barium and I could regulate how much dye was contained in the pouch.  Now, being post takedown, there is only one entrance and exit point.  Unfortunately, that removes my ability to regulate any pressure.  Unlike most GI barium x-rays where you get to drink the liquid, they actually inject the barium directly into you via a pump... controlled with a foot pedal.  [I wonder if it comes with a steering wheel.]  The really interesting part is you can actually watch on the monitor the barium being forced back through your system as they are snapping pictures.  The really disappointing part is it feels like you're being expanded like one of the monsters in Dig Dug, and with no way to regulate, you just roll with the punches.  This was by far the most uncomfortable procedure I ever had, but the pictures were really neat!

The good news is we could see the abscess on the xrays:  You could actually see it disperse the fluid back to the tailbone (into the abscess) rather than back through the GI tract.  Filling the abscess was uncomfortable as well, as then I had to wait for that to drain, which took a few hours.  Thank you percocet.  The radiologist seemed happy with the results and noted the abscess was not overwhelmingly large (approx. 4cm) from what we could see and should be easily remediated.

I still need to see my surgeon to determine what they will be doing next Monday.  At this point, everyone is saying it's going to be an outpatient procedure, so I'm interested to see what is planned.  I won't mind coming home that day, but let's just say I haven't been the fastest to recover from any of the previous surgeries.

To all you radiologists out there... go easy on the gas.

The Answer, My Friend

After scope, scan, and guesswork, we finally located the cause of the pain.  My recent CAT scan finally showed a presacral abscess that had formed between the pouch and the tailbone.  We are unsure if this is the same collection that formed after the first surgery or formed as a result of utilizing the pouch after the second surgery.  Either way, it's collecting stuff it shouldn't and ruining the party for everybody.

As a result, I will be going back into surgery on March 1 to have the abscess drained and removed.  What exactly the surgery will entail is still up in the air and pending a further X-ray next week.  This will allow the docs to determine the best starting course of action and whether they can manage the entire surgery rectally or laparoscopy.  We will be discussing the expected surgery, possible deviations, and expected outcomes next week at a followup prior to the actual surgery.  There is a myriad of possibilities in what they will need to do and possible change while in surgery, so I may not be sure until I actually wake up from surgery what was done.  [That's fine with me, as this isn't really my specialty and I will be asleep for it.]

I had taken myself down to one steroid a day and was still feeling the pain throughout the day.  We know the reason for this now.  We we aren't sure is why the steroid makes the abscess feel better:  It could be the cortisone is masking the pain, the actual suspension is help clearing the abscess, or the pouch just responds to the suspension in such a way that allows the abscess to drain.  Either way, it's working, so we are going to continue taking up until the actual surgery in two weeks.  This will help limit the narcotics I'm taking for pain as well.  [Trust me, I'd rather be on narcotics than the steroids, but the doctors don't feel that's a prudent course of action.  Why be in pain if you don't have to be.]

My tongue has swollen to consume about 2/3rds of my mouth, making eating and drinking uncomfortable.  As a result, we are switching antibiotics again to Doxycycline hopefully rid this nasty side effect.  Let's hope this antibiotic doesn't give me worse symptoms like the Xifaxan did last weekend.  The thought is the abscess is causing a majority, if not all of the problems with the pouch, including the pain in the tailbone, the pain in the rectum, as well as the inflammation in the pouch (pouchitis).  If this is true, the surgery should clear all three and I can work towards being antibiotic and steroid free afterward.  I will probably always be on some type of bowel slower, but I'll take that over the nasty meds any day.

While this may seem like a setback, I'm quite grateful that we have an answer and can explain what has been happening for the last three months.  It's also great to have a proper direction and an action that can help resolve as well.  It would have been nice to find this issue months ago, but no previous scans or tests showed the abscess.  In some cases, exploratory surgery is necessary and many people fight this issue for months and months before finally getting an answer.  So, it may not be ideal, but it could have dragged on even longer.  This, as they say, is water under the bridge, so wishing it had gone differently is just a waste of time and energy.

Here's to finishing the marathon as opposed to the sprint.  I won't have much to offer over the next week or so, but you can bet that I'll be looking towards surgery.

New Isn't Always Better

We started the new antibiotic, Xifaxan, on Thursday.  Unfortunately, one of the possible side effects is diarrhea: Now isn't that ironic.  Over the past few days, that's exactly what happened, and I'm doing worse than I was on the previous antibiotic.  We're switching back to the Cipro, as that gave me no side effects, but didn't seem to be curing the pouchitis either.

The cat scan is scheduled for Wednesday to see if there is any fluid collection or some other issue that may be causing external issues to the pouch and the pain in the tailbone.  It's likely it'll be blank like the previous, but I'll try anything at this point.  If it is blank, then we'll have to see what our next steps are:  I've got some ideas, but I'll refrain from posting them now so rumors don't get started :^)

Unfortunately, pouchitis is a possible effect from having the j-pouch.  There is a percentage of the population that get it, but some never get rid of it.  Some people are able to manage it with antibiotics, steroids, or other combinations of medications.  We'll have to see if we can get rid of this bout before worrying about long term meds.  I'm not a real fan of antibiotics (or really any "non-natural" medication.)  As with the previous three months of posts, we shall see with time.

Running to Stand Still

Time after the last appointment hasn't progressed as we had hoped.  Even after doubling of the steroids, the pain still creeps in if I wait too long to take it in the morning.  Also, the urgency has increased over the last few days.  As a result, the docs got a few calls this week to speed up the process and make some changes to our current direction.  The fact that the cortisone seems to be covering up the issue and not resolving the issue concerns us (well, at least me) that what we are doing is running to stand still, at best.

We're going to stay on the steroids to resolve some of the inflammation in the pouch/cuff, but try a new antibiotic, as the current antibiotic doesn't seem to be working as expected.  We're also scheduling another CT scan, likely early next week, to try and rule out any collections or other issues that may be external to the pouch and not seen on the prior scope.  I'm not asking to see anything, but an answer is an answer.

Let's hope there is some progress over the next week or something to direct us closer to the solution.  Let's also hope this isn't the best that it's going to get.  Thanks to all the good wishes, prayers and vibes!

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.

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.

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.

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. 

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.

Sub-Sti-Tute

"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!

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.

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!

Back Home From the Holidays

We returned home yesterday from the holidays.  It was wonderful to be back home and even better to actually feel well enough to enjoy it.  As the week progressed and the weekend came, the pouch was working better and the bleeding was lessening by the day.  I was able to enjoy those FANTASTIC sugar thrills and not pay the terrible price I was a few weeks ago.  Ironically, it was Christmas day that I tried using the hydrocortisone while being mobile rather than prone:  This made a major difference in the feeling of the cuff of the pouch and the bleeding.  This could be just a function of two weeks of meds or direct application or a gift from Santa:  I'm not going to pick, but I will say I'm thankful for it.  We're still a ways away from 100%, but were heading in the right direction and that's a good direction to be in.

While still on the steroids, I'm starting to swell like a tick.  I've picked up my wife's pregnancy cankles and my jowls extend well past my skinny forehead.  I've been trying to gain weight for nine months, and now have accomplished that at a pretty good pace.  I can't say I didn't get what I asked for, I guess I was thinking of it in a different way!  I'm not nearly as cold as I was a few weeks ago:  I haven't had this much padding in about 7 years.

There is still one week until the followup, so patience is prevailing.  I know that I won't get much for answers next week:  The truth will be told once the medication has rid my system and we try to survive on our own.  Until then, step by step and slow but sure.  To a happy and a healthy new year... !

Sugar Revisited

How is it possible to make it through your grandmothers' houses on Christmas without eating sugar? For this sweet tooth, it isn't. I was able to hold out until about 2 PM, which was only a few hours after getting there, before breaking down. Brownies, chocolate chip cookies, M&M cookies (personal fave), peanut butter buttons, smores bars (my wife doesn't help either), and the list continues.

I dabbled a little into the brownies, then moved houses and dabbled into the M&Ms, then back and some more chocolate chip cookies. I truly expected to be up all night with the runs, but the evening passed without event. Even with a total carbohydrate breakfast yesterday, which did make lunchtime a little "active", there was only maybe one extra movement all day. Either Santa brought me some cheer, the drugs are actually working, my pouch is adjusting to my foods, or some wacky combination of the above. I'm not sure I'll ever know the answer, but future trials will give a better statistical result!

If I'm able to get back on the sugar/carbohydrate train, you'll see me smiling like you haven't in months! For know, we'll control our excitement, not overdue and abuse a good thing, and see what baby steps gets us.

I hope everyone out there got what they wanted during this holiday season. I know I did, and it wasn't the sugar rush.

The Point of a Journey

Journey versus Destination:

This has been on my mind for a while, so I took some time to formulate. Many times, we get so focused on the where we are going, we forget that we are going and look around. "Smell the flowers" goes the popular adage, which is very true. There is more to learn from the journey itself than the actual arrival, probably because when you actually get there, it's not as you expected. Do not focus on the being, but on the going: It's likely you'll be more happier in the going in the end.

I've noticed this in my thinking regarding this current surgery and how the recovery seems to be a guessing game. Surgeons and doctors run on experience, gut feeling, deduction, and percentages. If only people were like computers, then ideally they would be right nearly 100% of the time, but we aren't. I've seen from so many others having this surgery that everyone reacts differently to meds, to procedures, that it's hard to know how the person is going to react. Ideally, we shoot for the most likely to succeed, but the patient may not respond.

This is where the patience of the journey must come to play. As the patient that has been slow to respond to initial diagnosis, we've had to change course, which takes time, endures more pain and discomfort, and keeps me from my destination (a working, care-free pouch) for longer. Understanding this journey, this "randomness" of how the body reacts, has been what keeps me grounded that it may take longer or may not work at all. The uplifting side is the trying. The going. If I had a working colon today, what would I have learned in the last nine months?

Holiday Travel

Traveling took a lot more out of me than I had thought, especially since I just got to sit there while the Mrs. drove. It is great to be home and see the family, so the pain and discomfort is barely in the forefront. The hardest part is keeping on a schedule of meds and food. Food: Oh, food. There's sugar temptation everywhere! One day down, 3 to go, and unlikely I'm gonna make it!

I'm starting to swell from the steroids: Everyone says I look good, so that must mean I must have looked horribly skinny before or they're lying: I'm going to go with the former. I guess it's true in the eye of the beholder! My sleep has been disrupted as well from the meds, but I do get a few hours of unadulterated sleep, which is enough to keep me going. I do feel tired, but for some reason, my mind continues racing. [This, btw, is how I typically operate, so I shouldn't be surprised here, just that it's worse than usual.]

I was able to go 9 hours between movements last night, which is a record since the surgery. There is still some cramping and pains, but they come and go: It's hard to figure out when it's just acting up or actually full. I'm still working out that detection. The bleeding has subsided to only as a result of movement and not actually in the toilet, which is a definite plus. It's still a little tender, but not nearly as frequent as before. There's still those "UC" times when there's urgency, but with a little concentration, I can "shift things around" and delay for a little bit.


Eggs: You seem to no longer want to hang around. For this, you will be replaced by Egg Beaters. It's been a wonderful run of many decades, but sadly, off you go. Tarnish some other person's cholesterol. Maybe if you learn to behave we can be friends again.

Pork: We're still good, just don't act like eggs and we'll get along fine. [I'll fight to keep you, so don't take advantage of me.]