Thursday, June 24, 2010

Magic Tricks and Erosion

For the most part, things have been progressing well, ableit slowly.  The infection wound is a blast to pack (note sarcasm here.):  The pain is quite intense and different than most pain I've felt when my wife or nurse is packing gauze in my left buttocks.  Removing the gauze is not nearly as intense, but still hurts the same.  The only saving grace is I get to entertain myself by chuckling "Nothing up my sleeve" while I magically make a foot of one inch cloth appear from my behind.  Thankfully, the pain typically goes away after about 1/2 hour and is then just uncomfortable.  This isn't true on all days, but most.

I've been thankful to be able to sit for dinner the past few days, if only 15 minutes on my special cushion.  Unfortunately, that typically induces a decent amount of pain afterwards and some drainage, so I avoid doing it for other meals or times during the day.  Without the drain, though, I can at least lay on my back, which has helped with sleep somewhat.  That has been a real challenge over the last few days and drives me to multiple naps during the day (and some morning grumpiness.)  Having my son around to pick things off the floor and run little errands for dad has been helpful too:  He's always excited to help and I'm always willing to oblige.

One thing that doesn't look like it's progressing well is my stoma:  It has shrunk, which is good, but has become flush on the left and bottom.  As a result, normal appliances won't fit.  I unfortunately waited a few days too long to change it last time and I've started to get some skin erosion around those areas.  This is quite painful and can lead to some nasty situations and a vicious cycle of open wounds around fecal matter:  Yes, it's as good as it sounds.  I've been in contact with multiple ostomy nurses from the major appliance manufacturers who have been fantastic with their assistance and sending out samples to try out.  If you have a need for assistance or want to try a different brand, I recommend calling:  They are very helpful and also call to check up on how your are progressing.

I'll have to keep an eye on this:  If this continues to worsen, there's a good chance I'll have to have it surgically revised to get it to protrude more.  It may not be necessary if I can manage with appliances, but if not, then surgery will be next option.  I would prefer it to be protruded, as it makes it easier to manage and change appliances.  Sometimes too long is bad too, so it's a juggling act of weighing what you have against what you're gonna get.  Also, I don't want to continue to throw more pieces of my bowel out the window unless really necessary:  Sooner or later, you run out of tube, and that is the least ideal situation.

Saturday, June 19, 2010

Packing It In

Yesterday I had my followups with my surgeon and Infectious Disease.  The surgeon was happy with the drainage around the irrigation wound and removed the penrose drain that was still in there.  It was an odd and painful feeling as he pulled the tube from my buttock:  It's odd to have that feeling so deep under the skin.  The drain was only about three inches beneath the skin, at this point, as the rest had healed and pushed the drain outwards.  Afterwards, the nurse had to pack it using gauze, which wasn't all that bad, although we get to pull a rabbit out of the hat today as we remove it to clean and debreed the wound.  Now THAT sounds like fum!  (For my next trick... Trying to figure out how to manage pictures or video of this one.)  My wife was able to visually inspect with the surgeon poking around and the wound has shrunk to the size and depth of my pinky to index finger.  It's closing well, so let's hope it continues down that track.  The sensitivity around the lower lapo site (the larger one) is to be expected and take a while to heal.  I can feel some of the scar tissue so it wasn't bowel or anything of concern.

He also removed the sutures from the anus.  I remember the fellow that removed the JP drain in the hospital (Making Progress) that the area is sensitive.  My, oh my, yes it is.  I guess on the good side, that means that most of the nerves in that area are functional, which is good, considering it controls so many other functions, such as urinating and anything from a genitalia perspective (thumbs up).  The downside is holy crap is it sensitive!  There were only four or five sutures, but it felt like I was being reeled in on a fishing pole with a shark hook.

The appointment with Infectious Disease was pretty quick.  They verified my numbers were stable and the high white cell count was due to the prednisone.  I guess we'll be able to confirm that once I'm off the prednisone!  The hemoglobin is coming back slowly, and no concern from their side.  He was able to confirm that since I came off the antibiotics, this wonderful rash around my groin was fungul - jock itch.  Awesome:  Let's tack that on to the fun.  I look like a monkey as I have one hand scratching in the front and one hand scratching in the back.  When asking him if I was healthy enough to eat sushi (which I miss terribly), his response was "Wait a minute.  You're asking an Infectious Disease specialist if you can eat sushi?  Raw fish?  Are you sure you don't need to the psychiatrist next door?  I'm not signing off on that... That's all you!  The last thing you need is a tapeworm"  Well, geez, since you put it like that:  Now I can't figure if that's a yes or a no, but considering I ate it before, I should be good now:  He's got me a little freaked out though!

I'm up to walking about a mile and quarter (one of the loops around our development) per day.  The sutures were bothering me during those walks so hopefully with them out, I'll be able to increase the pace (30 minutes for 1.25 miles isn't motoring) and hopefully the distance.  It's great to be outside and to be vertical.  Laying down for a majority of the day is starting to become a little annoying.  With the drains and sutures out, we should be sitting here shortly and hopefully decreasing the pain meds!

Wednesday, June 16, 2010

Waiting to Sit

My strength is slowly coming back, allowing me to be a little more active throughout the day.  This may only entail a single walk around the block, but it's much more than up to the stop sign it was last week.  The pain in the drain and the stitching has gotten a little worse with the activity, as is in some of the lapo sites, but I'll take that knowing that I'm moving more.

I'm eating like a horse and starting to eat those things I couldn't eat before with the JPouch.  This entails small bits of cheese (hey pizza or subs), Boost energy drink (yeah protein), broccoli (hey green veggies) and chocolate (omg, thank you.)  This unfortunately has increased my output, but I'll take the trade-offs.  Once I get back into the swing, I can manage that with Immodium and that's one drug I don't mind taking.

I ditched the antibiotics on Saturday and only have the steroids to go.  Unfortunately, I've developed a nice little rash, something of the jock itch sort, since I've come off them.  Can't say they are related, but ironically around the same time.  Let's hope a little Gold Bond and A&D takes care of it.  No more pills please.  Being of the antibiotics has softened my output as well (not sure which has more of an impact):  I've started on some probiotics to try and get some good stuff in me, considering I've probably nuked all the flora in my system in the last 7 months.  Here's to having some severe gas!  Nice to now I only have to burp the bag and not try to figure out how to pass gas without crapping my pants.  Ileostomy 1, JPouch 0.

I had blood drawn yesterday, but won't find the results until Friday when I have my followups with Infectious Disease and my surgeons.  Not sure what to expect during those visits, but that's half the fun now isn't it.  I'm still not sitting, although was able to manage in the car for the short drive to get the blood drawn.  Let's hope that Friday goes the same:  It's longer and bumpier.

Good luck to the USA WC football team:  We need a win to move into bracket play!

World Cup

Finally, something non-UC related!  Let's talk World Cup.  The first week is over and all have played their first matches.  What have we learned this week:
  1. No matter how good you are on paper, it doesn't necessarily translate to the field.  e.g.  Spain.
  2. Even if you have great skill, show a little dignity and not take dives like a wimp.  e.g.  Portugal (Ronaldo) and Uruguay (Suarez).  I will be rooting against these teams and players and hoping for some really good hacks requiring substitutions.
  3. Even if you are not that good, you can still have some pride.  e.g.  North Korea.  They don't take dives and even if they get hacked, they don't embellish and get right back up.  They don't take unnecessary fouls and play like real men.  Can't believe I'm saying it, but hats off to them and I'll be rooting for them this year.
  4. Speed is a huge benefit.  e.g.  South Korea.  They may not be the most talented, but these guys can cover ground like no other team out there.
  5. Soft goals still count, but don't necessarily make you feel good.  Who cares, you don't count goals, you count points.  e.g. USA and Netherlands (let's be honest, you didn't need help from Denmark, but it still counts)
  6. A ton of ties makes for interesting second and third games, as many teams still have a shot to move onto single elimination.  Only one real upset (sorry Spain), so the cards still look stacked for the top 5 or 6 teams.
  7. DVR is a gift from the gods.  Being off work, recovering from these past surgeries has definitely made it easier to watch the games.  I haven't missed a minute of a game yet and based on my expected recovery, I could actually see every single game:  That would top my previous viewing from 1994 where I saw 62.5 of the 64 matches.  I guess you have to have goals, right?
Here's to another great week of football and 16 fantastic games.

Friday, June 11, 2010

Another Thumbs Up

Today, I saw my surgeons for my first followup since surgery last week.  They are happy with the healing across the board.  The JP opening is closing nicely and is looking healthy.  The sutures around the anus are a little swollen due to the surgery, but should subside as time goes on.  At some point down the road (few weeks), these sutures will actually have to be removed as they don't actually dissolve.  Somehow, this doesn't sound like much fun, but here's to pain killers.

The penrose drain is still in and will eventually work it's way out.  They trimmed up the end today so there is less hanging, but there is little drainage compared to last week.  This is mainly because the irrigated site is now healing and when they first irrigate, the drain does it's job by allowing the irrigation to seep out.  Once the drain falls out, we have to pack the wound.  I actually got to see it this morning it's much bigger than I thought:  It's about the size of my thumb in my left buttock.  How it doesn't hurt more, I have no idea because that's a damn big hole to have in your body.  They mentioned that is highly likely that I'm going to have a scar there, but considering it's my buttock, I can't see it, and it's unlikely I'm in the market for an ass modeling career, I'm not too concerned, as long as it heals and doesn't impact me.

I'll be off the zyvox (antibiotics) in the next two days, which is a huge step.  Hopefully, the body is okay with it and we can continue forward:  I've been waiting to be off these things for 7 months now.  We are tapering the steroids over the next 3-4 weeks.  Again, a huge step after being on them for the last 7 months as well.  Let's hope we can rid ourselves of these drugs:  Now to me, that's living.

I met with my ostomy nurse ("Ostomom" we've affectionately named her) to go over my stoma changes, stomach changes, and best options for ostomy supplies.  As always, she was flying with options and things that would work best for me.  She had a few extras and gave them for me to try over the course of the next few weeks.  She thought that using a convex wafer was our best option, especially with my changing stomach and my shrinking stoma.  She isn't too concerned about the "height" of the stoma, considering it's still protruding from the stomach, just not as much as we'd hoped.  Her thought is the stomach is still a little distended and swollen from surgery and as I return to 'normal", this should allow to stoma to "stand up".  Honestly, at the rate I'm eating, I'm not sure that I'm actually going to continue to lose weight.  (Need to see where I'm at actually, was down to 145 lbs the other day, which is still pretty high, considering the past two weeks.)

The pain today has been through the roof.  Traveling to the hospital in the car was terrible, but coming home after the surgeons worked over my backside was agonizing.  Popping percocet didn't even cut it:  It was just a matter of struggling through it.  Once home, lying down in front of the World Cup matches definitely helped and allowed the pain meds to kick in.  Thankfully, that's behind me at this point and here's to the weekend being smooth.  Not sure what it's going to be like as the drain works it's way out, but we shall see.

World Cup - If you aren't watching, you missing the greatest sporting event ever.  USA vs. England tomorrow.  Now where did I put the face paint from Halloween?

Thursday, June 10, 2010

Sprung a Leak

We got the results from my blood test yesterday and things are heading in the right direction.  My white blood count was still a tad high, but lower than it was when I left the hospital last week.  They think this may be a result of still being on the prednisone.  My hemoglobin was still a little low, but higher than it was upon discharge.  They expect this to continue it's rise as I start to eat more and regain more of the blood lost while I was bleeding out.  Again, all in due time.  I'll have another CBC next week to compare the numbers and see how they compare.

While trying to clean out my bag last tonight with a little water, I sprung a leak around the wafer.  Not sure how long it's been there, as my output has been so thick, I don't think it would have actually worked it's way out.  I haven't been using water to clean it out, as I'm not offended by the smell and the thickness just means a little left over each time.  Go figure!  It took a little longer than expected, especially at 12:30 AM and after the Stanley Cup game (go hawks), as I had to reshape the opening as my stoma had shrunk quite a bit.  It's also closer to my skin and hope that it doesn't start to invert:  I really do not want to have a revision to make any changes to the stoma.  I'm hoping she just heals nice and perfect.  [Yes for some reason, it's a female, like a car, or a boat.  I can't explain why, it just happened that way and stuck.  Yes, I have some entertaining jokes that go along with this, but I'll spare my female readers but know my wife slugs me for it.]

I'm hoping to see my stellar ostomy nurse tomorrow with my surgeon to discuss the stoma and other ostomy options.  I worked in a belt today to help the wafer stay on, much like when I had my temporary and my convex wafer.  I may have to go down that route for this one as well:  Just the nature of me being skinny and my stoma.  It's not much different and the belt helps hold the bag on.  I think this was the main reason I had no leaks or bag failures with my temporary last year.  Why buck a good thing!  My plan is to contact the different ostomy suppliers and get some samples and test drive a few other products.  Considering I'm going to be rocking this out for life, I might as well get the product that works best for me and one I like.

Tuesday, June 8, 2010

Thumbs up

Today, we met with Infectious Disease to get a check on my numbers and see how things have been going.  Looking at me, they couldn't believe that I was sick as I was the week prior, and other than being a little skinny, they were happy with my results.  I am still awaiting to hear my latest blood test results, but all signs are feeling like they are going to be good.  I have to stay on the Zyvox until at least Friday until I see my surgeon and determine how long they agree for me to be on it.  (I guess there was a little headbutting about that when I was discharged, so it's a "joint" decision.)

I have been able to get in and out of bed a little easier each day and now alternate legs going up and down the stairs.  I only have pain around the penrose drain in the buttuck and the lower lapo site in the stomach.  I made it to the mailbox today to shoot the breeze with my neighbors, but after about 45 minutes, that was vertical enough and I had to go in and lie down.  I do get stronger by the day and I just "feel" better.  It's tough to explain, but even being this weak and the pain, my body just seems to be comfortable:  I have no idea if it's mental or physical, but it definitely helps me mentally.  I haven't been in this good of spirits in a while and I'm always in a good mood!

My wife has been a champ changing the dressing on the penrose drain.  It's been nice to get into the shower daily and just be clean (no, she isn't joining me...)  We aren't sure how long this is going to be in, but the sutures finally blew out last evening, which was quite painful, but it feels bettter today:  I'm assuming now that the sutures aren't tugging, it's just waiting to come out.  We have no idea how long it is or when it will come out, but we'll get more information when I see the surgeons on Firiday.  I can't imagine how people do this by themselves:  I can't see it without two mirrors and trying to tape all this together would be impossible (or at least very difficult.)

Today was the first day I tried to sit, and that was only because I had to get into the car.  With the cushion, it wasn't terrible, but it was far from enjoyable.  Sitting on anything like a chair or an examination table (skipped that one) is painful unless I try to seriously skew the buttock I sit on and that just makes my back and hips angry:  Standing is the best option other than lying down.   I have a feeling this is how it's going to be until this drain is removed.

My appetite has returned with vengeance:  I had a panini today with cheese on it and it was heaven:  Being away from dairy for the last seven months made me savor every bite.  I can't wait to be back to one hundred percent and eat whatever I want.  Soon, but not right now, but we'll get there.  Every day is progress, even if it's baby steps.  It's not much to count in quantity, but the quality is great.  The stoma has been working as expected, the output is thicker than before, and the pain is manageable.  Now that's a thumbs up.

Thursday, June 3, 2010

Discharged and Thankful

Yesterday, I got the thumbs up and was released from the hospital.  Over the previous two days, I was able to get out of bed more frequently and make more trips around the floor.  It definitely helped with the edema, but I'm still very swollen; more swollen than I had been in my previous surgeries.  I haven't been nearly as active this time either, but looking forward to that changing over the course of the next week.  I'm still limited in sitting down with the wound and penrose drain in the buttock:  My hips are starting to complain as they are getting worked more than they have in the past as well.  I have been able to sit on the toilet, albeit a little shakely and start getting the hang of the ostomy bag again.  Can't say it's like riding a bike, but the tricks I had before are slowly coming back to me.

Infectious Disease was happy with the cell counts as they continue move in the right direction.  They also noted that, had I been a little older, I would not have survived this little adventure.  Looking back, and speaking with other friends in the medical profession, that night after surgery was a lucky night.  Not many people survive having blood pressures that low, especially while being septic.  They also noted that's why I couldn't get any pain management, as they were concerned about giving me anything that would drop my pressure any lower than it already was.  My wife and I were completely unaware of how bad the situation really was, although it may have been for the better.  I think my wife would have liked to have stuck around knowing if I was in that bad of shape, but since it's all worked out, we got lucky.  Not sure if I cheated before, but I squeaked by this time, and I'm very thankful for it.

We had to work with case management to get on a PO version of the antibiotic so that I did not have to have a picc line installed.  Thankfully, my insurance covers a decent portion of the zyvox pills.  Having to deal with a picc line isn't the worst, but another possible source of infection seems to be a little against what we're trying to accomplish here.

I'm still left with the penrose drain in the left buttock where the infection site was.  The bag they had placed over it to catch the drainage, which is also subsiding, has been removed.  Now, we merely have to dress it daily to keep it clean.  Unfortunately, with the MRSA infection, anything that comes from that area is "diseased" (that's how my wife looks at it) and has to been given a little bit of care.  We've always washed our hands before and have been good with hygiene, but for now we'll have to be a little more diligent and aware.

The trip home was quite uncomfortable, but safe.  I had to lay the passenger seat all the way down and lay on my side again.  Hurtling down the highway, unbelted, after going through what I just went through, all I could hope for was to arrive home safely:  If something were to happen on the way home, that'd be too ironic to make even me to chuckle.  Once home, I was too exhausted to even watch game 3 of the Stanley Cup finals, which were tied at the time.  At the base of the stairs, the top seemed like one of the harder climbs I had done, to which my wife chuckled "Good luck with that!"  Yeah, and needed it.  Stairs are good exercise and we'll try to exert those as necessary in the upcoming days:  They are a leg/core killer and I don't have that much strength yet.  Getting into / out of bed has been tough, as it's much higher than a hospital bed, but we're trying all kinds of positions, pillows, wedges to make sleeping at least possible.  Benedryl worked wonders last night, but gives me the oddest of dreams, some of which keep me awake.  I've been able to manage the pain via pill form which has been good:  Let's hope my activity at home doesn't put me through the roof.

There is nothing like being in your own bed, no matter what it takes to get there.  My wife even moved to another room to give me the whole bed!  (although I think that's more so we don't keep each other up at night.)  I love being home and I love being alive.  Here's to each day getting healthier than the one before it.

Tuesday, June 1, 2010

Making Progress

Sunday evening the foley came out.  It is a wonderful thing to not have a tube tugging on your sensitive parts, especially with enormous edema (yes, enormous is the word to use here.  Even the male nurses were impressed.)  The downside is having to empty 400cc every two hours into a urinal.  Kidneys came back online in full force and slowly we're ridding the water weight.  Since then they've greatly cut my fluids as well, as my water intake by mouth has been more than sufficient.  Also, I'm losing less water via my stoma, which is fantastic compared to my previous surgeries, and having more through the kidneys.  I'm not sure if this absorption is due to the pain meds, but we'll figure that out as time progresses.  Let's hope this is how good an end ileostomy is compared to a temporary.

I finally started to eat solid food yesterday.  Mashed potatoes are a staple at every meal and some protein.  It's fantastic.  The people who complain about hospital food have never gone a week without eating or really don't know what they should be appreciating.  It's not five star, but it's much better than nothing and I know it's better than many other people get on a daily basis.  My appetite has been quite lacking though, which they say is a result of the infection:  It's going to take a while to get back to "normal" after being septic.  It's still lactose free and GI soft, but baby steps:  One reason I chose for an ileostomy was to go back to eating all the things I love.  This is a long-term gain and we'll get there.

Yesterday, they took out the JP drain that was in the right buttock and assumingly draining the surgical work done on the anus.  This, by far, was the greatest pain I have ever experienced.  The doctors explained this area was highly sensitive (go figure) and unfortunately, can cause severe pain.  Right they were.  I'm sure the people on the floor, and possibly outside, thought that someone was being murdered.  I'm not sure how long it continued, maybe a minute or so as they worked out the sutures and the actual tubing, but it felt like a lifetime.  I was thoroughly exhausted afterwards and didn't do a lick of work.  Thankfully, I had taken my pain meds just before we had our little adventure and I got to pass out shortly after.

I've been able to get out of bed easier today and even had cloth baths over the last two days.  My wife has been amazing through this process and dealing with not only my stench (hey, I've been bed ridden) but all the reworking, she seems completely unphased.  We've had some walks around the floor and I can slowly feel my strength returning.  It's no where near what it should be, but getting up and down is at least manageable on my own now, albeit slowly.

My bloodwork is showing progress across the board.  The infection seems to be under control as my white blood count continues to drop.  My liver numbers are stable, which is amazing considering being septic last week:  Oddly enough, after each of my surgeries, my liver numbers always returned to normal.  Maybe I need to adjust my diet?  This is something to be investigated.  Potassium and magnesium were a little low again, but on the rise and now with eating, expect to be normal today and no more drips: This is good, as they burn like hell when being infused into the arm.

All in all, I am trending in the right direction.  The docs are happy and there's a good chance I'll be able to leave either tomorrow or Thursday.  I haven't asked, so I'm waiting to hear.  No reason to rush out of here to only return.  Let's get it right the first time.