Food and Water

Yesterday, the surgeons gave me the thumbs up a for liquid diet.  That was quite thrilling, considering I hadn't had anything to eat or drink since last Sunday.  It also gave me the ability to drink water which is another huge plus, as even though I was getting pounded with IV fluids, my mouth was still incredibly dry.  Waiting to see if I'll get onto a soft diet today or tomorrow.  Mashed potatoes... yummy.

My blood pressure has stabilized and now has three digits on the top.  They took the central line out yesterday as they were happy with the numbers and wanted to minimize the chance of another infection.  It was kind of nice having that line in there, as they were able to just pummel me with all kinds of drips and there was no burn that I get in my forearms.  Oh well:  I'll take the burn rather than a picc line infection!

The foley is supposed to come out today sometime, but I've still got a ton of edema to get rid of.  It's nice to kinda cheat and not have to get up or really control the liters of urine that are pouring through the kidneys!  I was able to get out of bed yesterday, but it was quite a struggle and definitely painful.  My strength is still low and just standing is a chore.  The pain management has been okay, as they started me on percocet by mouth, but it doesn't last all 4 hours.  As a result, I'm still mixing in demoral in between to keep the pain at bay.  I'm hoping we can get this under control before I get released, as I won't get to give myself IM shots at home.

Today the blood cultures confirmed the infection to be a resistant staph infection: MRSA.  As a result, I'm now on isolation restriction and everyone gets to wear fancy little gowns and gloves when dealing with me.  I have to think this isn't the greenest way of dealing with patients, but it at least keeps them safer.  I'm not really at any risk (I already have the infection), but I'm a risk to those around me.  (Gee, way to feel like a leper!)  They cut out all antibiotics but the one necessary for the staph infection: vancomycin.  This is a benefit from a fluid perspective, as I was receiving four antibiotic drips before every 12 hours.  Mixing in the potassium and magnesium (which were also low), I was getting little IV throughout the day, but when I was getting it, I was getting it at a pretty good flow rate.

The goal is to get out of bed one more time today and at least go for a little walk.  I won't be breaking any land speed records, but I'd love to get off my right side and try being vertical for at least a short period of time.  There's only so much TV you can watch and I'm pretty much at that point now.

Out of ICU

Today, they moved me out of ICU into a monitored floor where they put the colon and cardiac patients.  I was here last year for my surgeries and actually had the same nurse today that I did last year.  There's a lot of friendly faces, so it's comforting to be here.  (I did have some bad ones last time, so I'm a little concerned if they show up, but let's see how it goes.)

I'm incredibly weak and exhausted and still haven't managed to get out of bed yet.  Thank god for the foley and the stoma:  Everything just shows up in a bag somewhere.  I'm not eating yet, but hopefully by this weekend, as the bowels seem to be working now, unlike my past surgeries where it took a while for them to wake up.  I've been setup with two drains, both in my backside.  One is a penrose in my left buttock that is draining the infection site.  They had to take a nice chunk of tissue out of the site as well due to the infection.  There is a Jackson-Pratt drain in my right buttock to help drain where a majority of the surgical work was done around the anus/rectum and where the abscess and JPouch was removed.They put an ostomy bag around the penrose to catch the drainage from the infection site.  I call it my "tail", as it's about 2 feet long and hangs behind me.  We'll see how much fun this is once I get vertical.  This makes being in bed a little difficult, as being on any of my backside is painful, so on my sides it is.  My hips are a little irritated by all this, but frequent shifting removes some of the discomfort.  Hopefully, once vertical, this will be a little easier.

The optomologist stopped by today to check out my eyes.  At some point along this journey, I broke blood vessels in both my eyes and blood has started to pool around the iris and take over the whites in my eyes.  Depending on what side of the bed you're on, I either look completely normal or like I'm hemorraghing through my skull.  I can't see it, but my wife got some pictures so I could check it out.  (Yes, I have pictures of the drains as well.  Hey, I can't see it from my view point!)

The fever has broke and has not returned since yesterday, so that's a good sign for the infection.  My blood pressure and volume has returned to normal, as well as my heart rate.  It's nice being stable!  The full body rash has also subsided:  Infectious Disease noted that was either from being septic or the reaction to the morphine.  One more pain medication that I won't be on again.  Can't say I'm disappointed, because there surely are better ones than that lollipop/candy cane of a pain med.  Good for short term, but aweful for long-term in my eyes.

Now, we'll look to trying to get out of this bed.  I'm not necessarily sleeping, but my eyes are pretty much always closed.  I can't remember ever being this tired.  Pain management has gotten much better today:  Being in pain is the worst feeling in the world.  And that's saying something considering I haven't had anything to eat or drink since Sunday.  I'm still being pounded with fluids and swelling like a tick.  The kidneys are a little slow to respond and most is outputting through the bowels:  This happened with my past surgeries so hopefully this will switch up pretty soon and I'll start to alleviate some of this water weight.

Post Op and ICU

I got out of surgery around 10:30 PM.  I remember waking up on the table after intubation and gasping for air as I had a huge amount of phlegm in my throat.  The first few seconds weren't bad as I thought I could cough them up, but as it continued, I was really struggling for air until they were able to suck it out or squeeze it out:  Shortly after that little adventure, I blacked out again until waking up in recovery.

I was in a terrible amount of pain and they were having a difficult time managing it.  My blood pressure was severely low, at around 60/40 at the lowest that I can remember, although my wife seems to remember a 50 mixed in there as well.  My heart rate was racing around 145 BPM.  My wife and I chalked all of this up to the pain and the surgery, but at the time, they weren't telling us how severe the situation really was.  I was conscious over the next four hours as they managed me in post-op recovery until they could get me into ICU.  The doctors and nurses were coming in and out as they monitored me, but mostly it was just my wife and I, with me doing a lot of moaning.

It was about 2:30 AM on Thursday morning that they finally got me upstairs and my wife headed home for some sleep as she had a pretty long day waiting around while I was carted from floor to floor.  Once in ICU, the docs were still concerned, although at the time, I could only see the looks on their faces and not really what they were concerned about.  Not sure why I didn't ask... I'm pretty nosey:  Assuming the pain sort of distracted me from the rest of my environment.

The docs decided to insert a central line into my jugular to better monitor my blood volume and prepare for a blood transfusion, should I need one.  I was conscious for this process and got to ask the one doctor all types of questions while the other was sterile and actually dropping in the line.  I must say, this was one of the more interesting points in my life, as I started to realize at this point the criticality of the situation, yet somehow disappointed that this wasn't being taped.  (I obviously couldn't see it as they were putting the line into my neck.  This may sound odd, but how often does this type of stuff happen?)  I remember the CVP number starting out at 2 or 3, which the doctor mentioned wasn't so good.  Once the line was in place and adjusted after a few x-rays, they immediately hit me with IVs to the central line at a wide open rate.

The rest of the morning is sort of a blur as they started to administer pain medication and I floated in and out of sleeping.  As today has progressed, my blood pressure has increased, if slightly, to where people don't seem to be freaking out about it.  Infectious Disease was in again today to discuss the issue with the infection, which we are still trying to narrow down.  They have started hitting me with a bulldozer of antibiotics, around 4 I think, to try and cover many of the bases that they think it is.  The final results of the cultures won't be available until tomorrow:  At that point, we should be able to choose the appropriate antibiotic for the infection and move forward from there.  The fever seems to have broken sometime this morning or afternoon with only a slight spike, so the irrigation from last night, as well as the antibiotics seem to be working it's course.

I have a feeling I'll be getting to stay another night in the ICU as they get my blood pressure and the infection under control.  I'm not in a hurry to leave, as the care here has been really good and the nurses have actually been quite entertaining.  My father always said you should take care of your nurses:  They not only administer the needles, they also administer the pain medication.  Remember to tip your waitresses!

Prepping for Surgery

Last evening was very difficult again with pain as they had to increase my morphine and decrease the time in between injections.  Taking four mg every two hours seems to control the pain better.  I am not sure why they are not going with other pain medications, but I'm not an expert and I will take what I can get at this point.  My fever is still increasing and does not look like the IV is going to control it.

I decided to completely forego having the jpouch at this point and instead have a permanent ileostomy.  I will not say the decision was easy, but after years of contemplation and now a year of being unhealthy, this is the path I prefer.  When I had my temporary ileostomy, I was doing quite well: Well enough that I pushed back my takedown surgery.  I could not convince myself that it was worth risking having a partially healthy jpouch and the possibility of a lifetime of medications was worth it.  I have no problems having an ileostomy:  To be honest, it's actually quite nice not having to worry about when I need to go to the bathroom, or when I eat so I can manage when I sleep at night.  No more sore butt... that just makes me feel good.  Also, I don't have to worry about what I eat either:  I can do the one thing that definitely makes me smile, and that's eat.  I love eating!  All types of food as well and that's not something that I wanted to risk sacrificing.

I also have the ability to save some of the rectum, just in case I want to try and go back in the future and maybe try to make the jpouch work.  I decided to forego that as well.  I am not interested in trying to make it work - I am interested in being healthy and living life.  As a result, the surgeons will also pull out anything that is left of my rectum (large intestine) and stitch up my backside.  (Many of you hear me refer to this as "Ken Butt".)  This also removes any possibility of me getting colon cancer, as I will no longer have any colon left, which is another plus to having this surgery.  By removing the jpouch, they will also be able to remove the abscess (thankfully) and clean that mess out so it should not cause any problems from here.  The sinus that you hear me speak of is part of the jpouch, so when that comes out, so does that little problem child.  Ahhh.. the thought of resolution.

My ostomy nurse was in yesterday and marked where we think the ostomy should be.  Considering this one is going to be permanent, I might as well pick where we want it.  It should be below my belt line, giving me the ability to wear jeans and such.  It doesn't mean I won't wear suspenders (maybe) considering I looked so dashing in those last year!

They also have to go in and clean out the infected mass that has built up in the buttock area.  Not sure how they are going to go about this, but as long as they clean it, I'm not sure I really care.  I will find this out on the other side of surgery.  It seems the infection is now also spread and I'm starting to go septic.  My fever is out of control, spiking into the 104 and 105 range, and I'm increasingly cold.  I am receiving all types of fluids and antibiotics, many of which I stopped trying to keep track.  I am looking forward to surgery and hopefully putting all of this behind us.

I have not been too concerned about the surgery, outside of the normal risks, until early this morning.  My father passed away two years ago and since his passing, I have not seen or felt him.  This morning, he was with me.  It was a calming presence, one that could not be seen, nor one that we shared any words, but I knew he was there in the chair with me.  I knew he was looking out over me at that point, and I knew that somehow, this was a little more serious than I originally thought.  We have always asked for him as a guardian angel and this morning, he may have shown his role.  Love ya Pop.

Decisions, Decisions

We've come to find out that the pain in the buttock is now related to an infection due to the bleed out from yesterday.  This is a completely new problem area separate from the abscess and one that has many of us intrigued.  The assumption is there was a build up of blood as a result of the bleeding from yesterday and my body couldn't handle the cleanup.  The pain has been excruciating and sitting is non-existent.  I'm taking my morphine the minute I can get it, but it only cuts it for about 90 minutes before setting back in.

I've begun to also show a fever that is starting to rise, mainly due to the infection in the buttock that seems to be brewing up quite a storm.  Infectious Disease (ID) doctors were in today to talk about the infection, but at this point, we don't know what type of infection it is.  They've run some blood cultures today to try and see what type so we can apply an appropriate antibiotic to try and deal with it.  They are going to start throwing the kitchen sink at me to try and keep it at bay.

My colorectal surgeon was also in today to discuss the options about the jpouch and the abscess.  We've been fighting with this since takedown last November, and trying to get it to heal while we are using it is an unlikely battle to be won at this point.  His preference is to pull up a temporary ileostomy, take care of the abscess, restitch the portion of the pouch that led to the sinus and let it all heal.  This would require at least two more surgeries, similar to what had happened last year:  The temporary ileostomy and then the reversal.

I know this is not my only option, as I can pull the trigger today and just go for a permanent ileostomy.  Many weeks ago I had reserved myself to this possibility, as I do not care for another year of surgeries, possible issues, recovery, and so on.  Life is passing me and my family by too quickly.  I had mentioned at one point that I was "committed to saving the jpouch", which at that time, I was.  Having gone through the last 7 months of roller coaster healing, the medications, the enemas, the steroids; I'm not sure I'm still that committed to this jpouch.  (In all reality, I knew this was a possibility when I was in college and investigating having my colon removed then.  This was not a new realization and one I had thought about for many, many years.)

Surgery is not until tomorrow night, so I'm going to sleep on it.  I still have discussions upcoming with my wonderful wife and my ostomy nurse:  The two women who have spent the last year taking care of me in one way or another.  My wife, the constant rock who seems unfazed by anything that gets thrown at us, whether it be a new issue, a new wound to pack, a new drain to clean:  She may not be a nurse, but she can handle anything in our household.  I truly am the luckiest man in the world.

Drain Removal and Admission

Well, things didn't go as planned yesterday with radiology.  They went in and injected the drain with barium and ran some x-rays.  The abscess had drained completely, thus the reason there was no longer any output.  The sinus cavity into the jpouch, however, was still there.  Beit that the abscess had drained, the drain had done it's job and was okay to come out.

This is when it got interesting.  As they removed the catheter, a blood vessel was nicked in the process somehow.  Whether this was the result of my pain or not, we'll never know, but regardless, at this point I started to bleed profusely.  The doctor was able to manage the bleeding out of the drain hole (my buttock), but because of the internal bleeding, it was bleeding back into the abscess, through the sinus and into my pouch.  After losing the first unit of blood within a few minutes and a second unit of blood within another ten minutes, this is when the team started to panic.  They immediately hit me with an IV in case I needed to receive a blood transfusion, and I punched my ticket for an overnight stay in the hospital.

Over the course of the next half hour, the bleeding stopped, but I was still in tow to stay the night to be monitored just in case.  Just as well, as after evacuating over two units of blood in the past, I knew it was best to have the doctors keep an eye on me.  I've bled out before after previous scopes, but never like this:  This was a little scary, especially when I realized that they may not be able to stop it just from pressure and the doctors look noticeably nervous as well.  Once the pouch calmed down and I was no longer having to evacuate into bedpans, I was able to calm down as well.  It became a little comical at that point, once I realized I was going to be okay, and chalked it up to another interesting day that somehow turned out a little different that originally expected... And I've had more than a few of those.

Throughout the night and into this morning, however, the pain in my left buttock has increased, as has it's size.  There doesn't seem to be any bleeding, as my hemoglobin has stabilized, but it's getting larger.  The nurses are having a hard time managing my pain level as well this morning.  The morphine is working for about 45 minutes, but then fades quickly and the pain sets in fast.  Two mg every four hours doesn't seem to be doing the trick and we need to try something a little different.

Roto Rooter?

The drain had been working throughout the week, pulling some funk from the abscess.  It was mostly blood and fecal matter, meaning the sinus cavity hasn't completely closed.  As of this weekend, the output has completely stopped and pain has started to increase in the buttocks area.  I'm not sure if this is a result of just having the drain or if something is actually wrong with the catheter and that's also the reason that it's not draining any longer.

I have contacted the Interventional Radiology doc on call this weekend both yesterday and today.  They don't have anybody in house today to manage this, but I'll be heading in tomorrow, rather than Wednesday to see what's going on with the catheter.  If there is truly a pain in the ass, this is actually it.

Papa's Got a Brand New Bag

... Although, this time it's not connected directly to the intestines.  Yesterday I had a gravity drain/catheter put in to drain the presacral abscess.  It took about 45 minutes in and out of the catscan machine while they tapped it.  I have to say, it was quite interesting and only slightly uncomfortable while the lidocaine set in.  The versed and fentanyl obviously helped as I'm not sure it'd be that much fun without them.

The abscess itself was about the size of a golf ball, between 5 and 10cc.  Unfortunately, I think the actual sinus cavity from the pouch to the abscess is still open, as the abscess responds to gas in the pouch and is draining more liquid than just blood and fluid.  The hope is the drain will keep the abscess clean so both have a chance to heal.  I've been put back on the antibiotics for fear of infection while I have the catheter.  This works out well (I hope) as being off them has been nothing but problems for the last week with increased bleeding, urgency and movements.  I'll be starting some probiotics probably next week and see if they help the process at all.

I'm not sure how long I'll have the drain, but will have followups every 7 to 10 days to get a look at the output as well as a catscan to check out the abscess.  They will also do a barium flush (through the catheter) to see if the abscess is connected to anything else (the pouch in this case.)  I have tried sitting twice since yesterday with little success.  Getting around has gotten better through out the day, so hopefully tomorrow will give way to more vertical adventures.  Here's to a good week!

Pain, Strain, and Drain

The results of the ctscan came back last week and the abscess is still there.  It's slightly smaller than what it was the previous time, but still there nonetheless.  As a result, my surgeon has recommended a drain be put into the abscess to assist in it's healing process.  Tomorrow I will go into Interventional Radiology and have the drain inserted.  At this point, I'm not sure exactly where/what/how long:  Much of that (actually, all of it) will be determined by the doctor once they see the abscess under ctscan and determine the pressure build up within it.

I've been off the antibiotics now for just over 8 days and there is a noticeable difference; unfortunately, in the wrong direction.  The gas build up is much more than previously experienced and urgency has definitely increased.  Yes, antibiotics do work and yes, bacteria generate gas - These have been proven definitively.  I'm still taking the steroids, which may be helping with the pain as it's not as bad as it's been, but still there in small doses, mostly in the evening.  Swelling like a tick with edema - jowls and
cankles

Golf looks likes it may be on hold for a while: Not really sure what I'm in for tomorrow, but at least the versed should cause me to forget the bad parts.  Let's see if any stories come out of this little procedure.  I'll post more over the next day or so and update how the drainage procedure goes.

At Least They Work

Taking the steroids once a day didn't improve much, so we quickly switched back to twice a day.  Within 24 hours, I immediately felt better.  As expected, I took on some swelling, crazy appetite, and wacky sleep patterns, but at least I'm sleeping and not going to the bathroom every 2 hours.  Thankfully, this took place over last weekend, which coincided with travel and golf, both of which went very well.  It's nice not to be sore after exercise, so steroids have that upside as well.

I had another catscan on Friday to determine if the abscess is still lurking, which I have to guess it is, as the symptoms I had before going back on the steroids was very similar to last Nov and Dec.  I won't find the results until at least this week or possibly at my next appointment on the 11th.  Based on those discussions, we'll have a course of action to take.  At this point, I'll be on the steroids for another 2 weeks at the current dose, but will be stopping the antibiotics in about 7 days.  Keep a lookout on the fever, but at least I can handle the sun:  Jay + Sun + Antibiotics = Way Worse Sunburn Than Usual.

I've been back to work for two weeks at this point and things are progressing well, especially with the steroids.  I can function normally for a whole day, but am quite exhausted at the end of the day.  Getting up early as a result of not sleeping gets me an early start, which I prefer, as working past dinner seriously disrupts my eating patterns and nightly timings of bathroom breaks, which I like to keep to a minimum.

I know steroids are not the long-term answer, nor do the docs, but at this point let me live a semi-normal life:  Well, maybe the two-a-day suspension steroids aren't "normal", but sometimes you have to change your perspective a little bit.  I never noticed how much I didn't like the caulk job in my bathroom until recently!   :^)

And the Wheels on the Bus...

Even after going back on the steroids, the urgency didn't seem to resolve.  Over the past week, the urgency and pain have continued to increase.  The pain is starting to feel very similar to that of late last year, which ended up being the abscess.  Thankfully it's not in the tailbone, which was debilitating, but more in the canal area, which feels more like being stabbed with a hot ice pick.

I currently have a call into the doctors to determine what's the next course of action.  Upping the steroids will likely make me feel better, but won't necessarily fix the problem, as we played that game from November through February.  My next appointment is still over 2 weeks out, but I'd be happy to go get another scope/xray/cat scan - anything to get ahead of the game rather than waiting.  The percocet is helping take the pain away and also solidify some of the output, but I realize, much like the steroids, they only help you "feel" better, not fix the problem.  It's been 6 months - I'm ready to be fixed.

We're to be testing the golf ability this weekend, so we'll see how that goes:  That and travel may make for a long weekend.  At least I get to see my new (and first) niece!

One Little Victory

I had my followup appointment today to assess how things have been since coming off the steroids.  Other than a little acne (feeling 18 again), things had been pretty good over the past few weeks.  Unfortunately, the last two days have been outta sorts with joint pain and much more urgency with the movements.  The abscess seems to have healed, but the pouch seems to be a little angry and inflammed.  The doctors think coming off the steroids was a little too fast for me and being on them for so long.  (Go figure - I didn't respond as most people do.) As a result, I am going back on them for the next 5 weeks:  This will result in a longer taper and hopefully more time for my body to adjust.


With the abscess healing, the doctors are okay with me going back to work after getting re-acclimated to the steroids.  This is a victory as I can get off disability and back to work.  Ideally, I'd love to be healed completely before going back, but the steroids and antibiotics at this point are mostly maintenance (we think) and should be off of them soon.  Also, if I have to go back for further surgeries, I'd like for my management to remember who I am before I'd have to go back out again.  (There are none expected at this time, but I've learned to always plan for the worst and hope for the best.)

My next followup isn't for another 4 weeks, at which point we can access how the steroids are doing.  If they aren't working in the next week, then it may be something other than pouchitis.  I'm hoping this clears up and stays away after the steroid taper:  Chronic pouchitis is something that I really want to avoid as being on medication for the rest of my life to regulate that inflammation is something that would make me investigate other options.

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!