Rule #1: Don't let a resident from Plastics put on your ileo bag

Morning.  Awake again.  But can I really consider it being awake if I didn't truly get any sleep?  See the, horrid thing about being in the hospital is the fact that you really don't get any deep, restful sleep.  At all.  The blood draws happen at 2am.  Yes folks, that's right, 2am.  All the lights pop on and they torture you to try to find a remaining vein that may or may not produce a modicum of blood to get the levels they need to measure.  This is amidst the blood pressure, temperature, and pulse oxygen measurements which happen every 2 hours or so?  And just when you finally doze back off, the i.v. lines start beeping incessantly.  As dawn finally breaks and my heavy eyes can't stand staying open anymore, I pass out for a minute.  And again, I do mean a minute because between 6 and 7am, the residents for the doctors begin rounding, again turning on all of the lights, each of them taking a turn asking you the same questions over and over, each one wanting to examine you to see the body part in which they soon will be specializing.  When you don't know if the doctors will be by later, your tired brain scrambles to try to remember the questions you want to ask, knowing if you forget to mention anything, you won't get another chance until the next overly-tired morning rounds.  They spend between sixty seconds and three minutes, and lights go out again.  Soon, the sun is blazing through the window, the food cart, rattling, is being pushed through the hallway, and your breakfast of fairly tasteless mass produced food is dropped off, stinking up your room with smells of weak coffee in plastic mugs, rubbery eggs, and tasteless, soggy pancakes.  Is it any wonder people recover better and faster at home than in the hospital?

But I digress.  Upon "waking" on day three, I'm still in pain and in the spinal unit.  Adam is my daytime nurse again, which makes me happy.  I keep tripping over myself apologizing for the prior day's pain and complaints that were lodged.  He asks how my night went, and I tell him the usual, crappy and tiring and somewhat painful.  He asks if there is anything he can do to ease my pain, and I quip "get me out of this bed...not to walk, not to look out the window.  Just get me back in my old air bed that they forcibly took away."  I absolutely HATE sand right now.  This bed has me folded in half like a taco, and my back is screaming for something hard to be underneath it.  Like a rock.  Or a plank of wood.  Or ANYTHING that could possibly give my straining, aching back muscles a rest.  Adam makes a call.  And a second call.  And about 3 hours later, blissfully, my air bed is re-delivered to me, and for the first time in three days I'm out of the sand and back on air.  As per the agreement I made with Adam, I did half a lap around the floor and then got back in the room and into my happy happy air bed.  Did I mention happy? Oh, happy bed.

It still hurt a ton to move, and I could barely shuffle my feet, but having the ability to not be totally flat on my back, to be able to roll to my side, to find a comfortable position, to get out of bed seemed like such a luxury.  I couldn't have been happier to have that bed, and with that bed came a new room and new roommate.  Okay, take away one of the 'happy' from before.  As stellar as the bed was, the new roommate definitely made things a bit more difficult.  But I'll get to that later.

Being up and moving meant they determined that I could now eat 'clears' for dinner--no longer was I npo, but was allowed to consume some broth, or Italian ice, or juice for dinner.  I passed on it.  Anyone who knows me knows I don't like soup broth on a good day, let alone when I've had nothing in my system for 3 days. 

One thing I didn't bank on with the new bed though, and the moving around, was the fact that my bag wouldn't keep holding.  I guess the first tip-off was the overly excited resident from plastics who very proudly exclaimed to her whole group of residents no less than 3 times "I put on her ileostomy bag!!"  Well, folks, rule #1: Don't let a resident from Plastics put on your ileo bag.  It may look aesthetically pleasing, but it won't hold up worth a darn.  Larry, my nighttime nurse, sure learned that one quickly.  He and Shelby quickly got a lesson in How to Change an Ileostomy on the Fly 101.....

Q-Tips are a girl's best friend

Pain.  Oh, the pain.  Upon waking on day two, I was in pain.  The oh so special bed was proving to wreak havoc on my back.  Though it sounded like it would be a lovely and comfortable thing, and maybe it would be if you had a foot infection and weren't cut open, for an abdominal patient it killed.  I'm cut from about an inch above my belly button down to my pelvic bone on the front, with muscles that have been detached and rearranged.  I'm also cut on the tush.  This bed is very similar to a water bed in its fluidity, and thereby provided absolutely no support for my back.  Though I had an abdominal binder on (think large, Velcro girdle) it didn't do much to support me.  The binder did a great job of keeping my incision together but wasn't stiff enough on my back.  The bed allowed me to sink so far down in the middle that I couldn't get comfortable.  I was flat on my back.  As in flat.  Staring at the ceiling.  No pillow.  No way to roll, prop, even move.  To make matters worse, my 'pain button' aka the pcs, which is supposed to give me a jolt of the phentanol, doesn't appear to be working.  I press it, and continue to feel the pain getting worse. 

Barbara and Adam were my daytime nurses.  Barbara asked me to roll over to look at my incision on the backside, and i broke down in tears.  Not only was the pain getting worse and worse, but I couldn't move.  I felt totally immobile.  She kept arguing with me and I flat out refused.  She called down to the surgical unit to see if there was a way to get me to do it, and a representative came up and said I didn't have to if I didn't feel up to it.  I kept trying to convey to them that it wasn't a matter of me being belligerent, but if they could get me in a NORMAL bed and get my intensifying pain under control, that I'd roll over and show them.  They tried a bolus of the phentanol, which did absolutely nothing.  When Barbara and Adam realized that I wasn't just being difficult, they called down for the pain team to see if there was any way to better manage my pain.  For five hours I laid in the bed, unable to move, unable to do much of anything except whimper.  I was brought a basin and soap so I could get washed up.  I just stared in disbelief.  If I can't move, can't roll, and am in a severe amount of pain, do I REALLY care if my skin smells pretty? 

Well, 5 hours later, the pain team arrived and adjusted the dose of ketamine.  I went from being in extreme pain to in very little within 2 minutes.  Amazing.  I became a completely compliant.  Well, not completely, since I still was having a dickens of a time trying to roll over.  And since I was cleared of having to roll over until I was ready, I pretty much passed back out. 

I woke a short time later realizing I wasn't breathing too well.  All along, I was in a panic over breathing and the risk of vomiting, coughing, all of it.  Should any of that happen, I couldn't manage to lift my body up enough to clear my mouth or throat.  It's such a crappy feeling.  To help me from feeling like I was going to drown in bodily fluids, I asked Mom to pass me my Q-Tips.  I can't extol their praise enough.  See, one thing I don't think patients realize is you lose your ability to blow your nose when you're 1), cut open and 2), flat on your back.  Diamonds hold nothing over Q-Tips for me.  I was able to finagle the Q-Tips enough to clear my nose.  Truly, they are a girl's best friend.  Well, at least this girl.  Or any other ones who have been cut open for any particular reason.  Passing back out and breathing better with my oxygen still up my nose, it felt good to be pain free, if only for a few hours.....

Like the beach, only worse

Eyes fluttered open.  Pain.  Which means I'm alive.  But I'm in pain and immobile and flat on my back.  I lay there in recovery, not moving, waiting for a nurse to come over.  She asks me what my pain level is, and I tell her it's a 9.  She says that's too high and I have to wait for it to come down.  Eyes close again.

I wake, not sure how much longer later.  I notice I have not one but two i.v.s, one in my right hand and one on my left arm.  The nurse stops by again, asks my pain level.  I again, tell her it's a 9.  She again tells me it's too high, though she informs me that my hair looks amazing.  I'm not kidding.  She tells me that it looks like I could walk out and go to a club, and that hair never looks that good post op.  Not caring, I pass back out.

When I wake the third time, I again get seen by the nurse.  I ask how soon I can get out of recovery and up to my room to see my family, and she says, "..when your pain level decreases," at which point she asks it.  I tell her it's a 6 (it was still a 9) just so I could get transferred up to a room.  She calls for transport, and I'm on the move.

As I get wheeled on my bed into the elevator, I notice we are headed to the fifth floor.  Normally I've been on the second floor when I've had surgery with Dr. Lee, and I'm not quite sure why we're headed that much further up.  Once on the floor, I'm wheeled into a room much like Surgical Step Down at Vassar, with a nurses station in the center, 24 hour care, and 5 or 6 bed slots.  As I'm being wheeled in the door, I feel my catheter bag get caught on the door, so I let out a bit of a yelp.  The guy wheeling me asks what's going on, and I told him, and he rearranges my bed and tells me not to worry, that it wouldn't really have pulled out.  Easy for him to say, he didn't feel the tug of the line as it got caught on the door frame.  But I got placed into slot 4, and soon thereafter, in walk Mom, Dad, Aunt Donna, and Joe.  What a welcome sight.

All ask how I'm doing, and are happy to see I've come out of it okay.  I ask where I am, and I'm told by my nurse Rich that I'm in the spinal trauma unit.  Normally if I was on a different pain medication, I'd be on a different floor, but since they had me on ketamine and phentanol, the ketamine had to have continuous monitoring for the first 24 hours that it's being put into my veins.  My 'neighbor' in bed slot #5 is Amish.  His parents came in from Michigan because of his spinal injury.  He was a new father, and his wife was there with their 2 week old baby.  Apparently, his horse acted up and he ended up having an accident and broke the tendons/ligaments in his neck, and if I remember correctly, he broke his back as well, so again, when everyone thinks I've gone through the ringer, remember him in prayer.  He's looking at a 6 month recovery with a brand new baby and young wife.  He'll have some obstacle to overcome.  His family took him home after only 48 hours because his mom said he'd recover better at home, and I have no doubt she's correct.

So Mom tells me my surgery went well.  It was shorter than anticipated because, well, it ended up being a different surgery than originally anticipated.  Dr. Polynice had drawn a diagram thingie to show Mom and Dad what happened instead of what was planned.  Originally, I was supposed to have the gracilis muscle taken from my thigh, but when Dr. Lee opened me up, they solved the answer to one of the problems I've been having.  Wait for it, wait for it.....my uterus had tipped over!!!!!  Yes, that is worthy of five exclamation points.  Apparently, where my large intestine used to be was a large empty void (kind of like my head on most nights) and my uterus decided to be lazy and take a nice long nap.  It laid down in the hole where my intestine used to be and was kinda stuck to the pelvic floor next to the sinus tract that needed to be removed.  When Dr. Polynice saw this, he realized it needed to be propped back up, and my gracilis muscles weren't going to be sufficient enough to do it, so they took one of my abdominal muscles instead.  Everyone has two rectus abdominus muscles, better known as the 6 pack muscles.  The left one of mine (the side under my heart) helps to support my stoma, so they detached the right hand one at the top and flipped it upside down, threading it behind my uterus, and eventually stuffing it down into the sinus tract area of the rectal spot that wasn't healing.  Technically, they killed two birds with one stone, or rather, filled two holes with one muscle.  Dr. Polynice filled the now missing muscle space on the right side of my abdomen with some sterilized pork tissue stuff.  Does this mean when I sweat I'll smell like bacon?  Boy, that'll get me a husband in no time!  And the further good news in all of this?  My value for black market spare body parts has decreased that much more. 

Okay, so back to post op.  Within five minutes of being in the room and getting settled, they bring in a new bed, but it's not just any bed.  Oh no, it's some special fancy schmancy bed that all of the nursing staff seems to be in envy over for me.  Apparently, the bed is called a cavillon or something like that, and it's filled with sand and is hard as a rock, but the minute they plug it in, it becomes like a sandstorm under your body, 'gently cradling it and promoting healing.'  They told me it's like experiencing a water bed.  I protested being transferred, but they insisted and before too many more minutes had passed, a moving crew had passed me from my air bed into this sand bed.  I was in too much pain to notice, but soon I'd find out.  The bed was like the beach, only worse....

It looked like a bug's eye....

Okay.  Wow.  Talk about a whirlwind of a week.  And some stunning alliteration.  But I digress.....

So morning of surgery, we had to leave at 4am, and considering I went to bed around 245am, I was just a tad bit sleepy, and yet on the two hour ride up to Albany, I don't remember sleeping even a minute.  I think my already jumpy nerves were getting the best of me.  My mouth, already dry since after midnight is NPO (nothing to eat or drink, including gum, tooth brushing, etc), is like cotton.  We get there and dad drops mom and me off to go get started in the admission processing.  We go in, get checked in, and I get taken back into the back to start filling out the medical history stuff.  Then they bring in the nurse to start my i.v. to run the sleepy drugs that are normally given pre-surgery.  As anticipated, it hurt like the dickens and my vein blows.  The nurse goes back and gets the 'sure thing,' a woman who is skilled at getting veins of those who are like me.  The woman comes over, says 'I've had you before, right?' and I said 'yup, so hopefully you'll be able to get it.'  Yeah.  Didn't happen.  So my already frayed nerves at this point are completely shot and I burst into tears.  For me, this was a worst case scenario.  I've never been this on edge prior to surgery, and when my veins aren't even able to be gotten by the expert who has gotten them before, it ups the panic tenfold.  They tell me that they aren't going to run the i.v. until I'm under with the gas anesthesia.  Mom and Dad pray over me, and I'm wheeled away.

I've never been in the operating room fully awake.  Never.  I'm usually on the sleepy time i.v. stuff and passed out drooling by the time I'm wheeled away.  It was such a sense of panic to be back there, flat on my back, looking up and around at the massive sterility that is the OR.  The light overhead has to be a minimum of three feet in diameter, made up of at least (or so it seemed) 100 little lights that I knew would soon be peering down into my abdomen, illuminating all for my surgeons to see.  I swear, it looked like a bug's eye.  And in the midst of my soaking up of my surroundings, Dr. Lee walks over.  Greets me with a good morning and how things have been going.  I told him about the increased issues with my uterus, and he assures me he'll take a look and take good care of me, at which time I break down crying again.  The look on Dr. Lee's face scared me.  He asked why, I told him of my feelings, my fears with this surgery, and asked him to bring me through it all.  He reassured me that I was in good hands with both him and Dr. Polynice and that I'd be fine.  Crying.  To my surgeon.  And in the biggest panic you can imagine.  Dr. Polynice also walks in, Dr. Lee grabs him, pulls him aside, briefs him on my lack on emotional stability, and he also came over and reassured me everything would be fine. 

Still sniffling, I laid back down on the gurney and was strapped down, oxygen mask over my face.  I could hear everyone still talking, hear them say to start the gas through the mask.  Unable to move, gas started getting pumped through.  I don't have many fears in life, but it was scary to sense that I was losing oxygen and it was being replaced by something that was making me feel like I was suffocating.  And while breathing as deeply as being told, I went under.....

so...

A doctor walks into a room.  He talks to the patient about the newest surgery that's going to be needed, and asks about the patient's ileostomy and whether it's working well or not.  She assures him it is, but that healing after surgery is going to be a crap shoot.  He looks at her, deadpan, and says "literally."

ba dum ching!

get it?  ileostomy?  as a crap shoot?  oh, forget it. 

Honestly, I had an interesting meeting with Dr. Lee yesterday.  It was the first meeting I was going into where I already knew what was going to happen, what needed to be said, so nerves really weren't that high.  Truthfully, I'm kind of taking this surgery in stride.  That's not to say that it's not going to be a major major surgery, which it will, but how else can I view it but with humor?

The crap shoot?  Yeah, had Dr. Lee laughing with that one.  When we discussed what Dr. Polynice was going to do to my thighs, and that only one might be involved?  I again had Dr. Lee laughing and shaking his head when I said "I don't care if he does both.  At least then they'll be even!"  And later, when discussing which surgeon would be doing what, in my oh-so-delicate manner, I said "And you'll be reaming me out" much to Dr. Lee's amusement.  Sometimes I think he's not quite sure how to take me, but at least I can stay positive and joke about it, and I think that might be refreshing?  Beats me. 

So the surgery is going to be a bit bigger than expected, which is fine with me.  Dr. Lee is of the opinion (as am I) that as long as I'm under, it's better to open me up abdominally and make sure there is NOTHING overlooked.  It would suck to do this surgery without the abdominal component, and 3 months later develop another sinus from whatever would still be going on abdominally that we happened to overlook.  So Dr. Lee is going to cut the gut, make sure that's okay inside and if it's not, fix whatever is wrong.  Then he's going to open up and ream out my rectal sinus that's not healing, and he'll be closing me up abdominally while Dr. Polynice and his team will start with the gracilis cutting and stuffing into the butt.  The new expectation of time, with two surgical crews working on me simultaneously, is 6ish hours, give or take depending on what Dr. Lee finds abdominally. 

Surgery is scheduled for September 14th at this point, which means I get to do the dash AND have my birthday before going under the knife again.  That alone makes me happy. 

I started training last Sunday with my little walking group.  We're planning on continuing every Sunday until the dash to improve our strength and time.  I'll post separately regarding training. 

So that is all for now.  No more follow up appointments until my pre surgical workup, the week of.  I get to enjoy the summer, work hard at training, and get myself in great shape before surgery. 

Love to all and thanks for the thoughts and prayers.  Now for training and Chocolate milk, hummus and hula.  Whatever I can do to keep in shape and kick that dash's tush. 

kiss.hug.love

B

no more thigh master for me...

the horror!  not that I did it anyway.  Ever.  But at least for a while, Suzanne Somer's miracle thigh thingie and I will not be formally acquainted.

So I went to see Dr. Polynice today.  And, it's not an if, it's officially a when.  I will be needing surgery.  It will involve one, or possibly both of my thighs.  And the research that I did, though competent for healing other more shallow types of wounds, would not in fact work on my tush.  The GOOD thing is, I will not be getting my butt cheek peeled off and stitched back on like I had found in my research of the gracilis muscle surgery for the perineal sinus region.  At least my cheeks stay intact, and I'm sooooo happy about that.

So this is what's going on.  Essentially, I'm "almost" healing from below, but there is granular tissue inside that has formed a pocket of non-healing area.  It's like the tissue is too saturated by itself to fully knit together.   What happens, what I presumed to be pus, is actually sloughing of the granular tissue to the outside.  Had the hole completely closed off like it was supposed to, it would have formed a large and nasty abscess.  So, in this case, not completely healing was a blessing.

Surgery, again at Albany Med, will go something like this: a 5ish hour surgery during which both Dr. Lee and Dr. Polynice will scrub in.  My tush will once again be excised by Dr. Lee, clearing out any of the nasty non-healing tissue.  Dr. Polynice will cut into one (or both) of my thighs.  There will be an incision made from the inner thigh/groin area down about 1/3 of the way, and another one down by my knee.  The one by my knee will disconnect the gracilis muscle ( http://en.wikipedia.org/wiki/Gracilis_muscle) from its attachment at the bottom, and the upper incision will allow Dr. Polynice to thread the muscle (one of the less necessary adductor muscles) through the pelvis and into the pocket of non healing area in the perineal sinus area.  Because the muscle is still connected at the upper end of the leg, it will have its own blood supply, thus stimulating proper healing and tissue growth in the sinus and healing this issue up once and for all.  He may need to cut into both thighs if the muscle from just one isn't sufficient enough to fill up however big the hole is internally. 

I asked about success rate, and though this isn't a common surgery to be performed, Dr. Polynice has had complete success with it.  Let's hope my body allows that track record to continue.  Healing/recovery time is looking like a few days in the hospital, a few weeks at home with drains in the leg and probably the sinus area, and hopefully total healing within a month.  Hopefully.  That's if my body decides to fully accept the surgery this time.  But at least Dr. Polynice has been forewarned about my lack of healing prowess :)

There is no surgery date set yet.  I go back to see Dr. Lee and Jody on Thurs (May 5) and I'm assuming we'll go from there for scheduling. 

That is all for now, folks.  In the meantime, I'm starting training (walking) this Sunday for the dash.  I've gotten myself a kickin' set of ankle weights with adjustable weight pockets, so they can range from nothing to 2.5 lbs per leg.  As I get more into training, those things will whip my legs into shape really quickly.  And I got a 5lb kettle bell, since I have a love affair with them, and I fully intend to start using that to strengthen core and upper body. 

Will post after Sunday, and again on Thursday.

Much love,

B

Oh, and with this being my 4th surgery at AMC, do I get my free vacation now?  I really think they owe me one after 4 surgeries in a year and a half.  Maybe they should send me on one just to keep me away from it, like a bribe to heal.  "If you promise to heal and NOT come back, we'll send you away for a week to some place tropical, where no one cares if you're already missing organs."  Sweet.  I'd buy into that club any day. 

Oh, and extra added bonus.  There's not much of me left that anyone could sell on the black market, so I never have to worry about the urban legend of the ice in the bathtub.  Extra added bonus :)

I get to see a plastic surgeon!

No no no.  Don't get your hopes up.  It's not for anything fun, trust me.  My dreams of having leg extensions to be over 5' still is not happening.  The surgeon actually does plastic AND reconstructive surgery, and possibly will be handling my next tush surgery.

I went to see Dr. Lee on Thursday, and the appointment went a bit as expected.  I told Dr. Lee that during the three weeks he had me off the antibiotics, the bleeding returned and the pus returned more, as did the abdominal pain and back pressure.  My butt is being a pain in the butt and NOT healing!   Bottom line, I don't know why.  My dentist (who also has Crohn's Disease and a permanent ileostomy) has his own theories.  He said he read research recently that children who develop Crohn's at an early age grow into adults that don't heal properly.  Because the body is constantly fighting against the Crohn's, it never fully develops the proper healing pathways necessary to fight certain types of things.  He thinks that, since I've had Crohn's since I was very young and now am having difficulty with a formerly Crohn's affected area, that it could be the cause of some of my problems. 

Anyhow...

So Dr. Lee, Jodi (the WOC nurse who also conferences in with us), mom and I discussed what is the next course of action.  Because Dr. Lee did my initial surgery during Feb 2010, and second surgery Jan 2011, and a year and 3 months later I'm still not healed, we need to look toward doing another surgery to see what's going on.  We're just not sure if it will be a big surgery or an even bigger one at this point.  Dr. Lee said he's not sure if he would want to do an exploratory surgery (abdominal/rectal) to make sure there is no fistula or anything going on internally that shouldn't be.  What he's recommending is that I go to see Dr. Alain Polynice, a plastic and reconstructive surgeon with whom Dr. Lee has worked in the past in the very few cases he has seen like mine.  Dr. Polynice is brilliant in his field too.  Seriously.  At least I'm in capable hands with both of my surgeons :) 

Normal people heal properly for Dr. Lee.  I, as you all know, am not normal.  So, I have an appointment with Dr. Polynice scheduled for April 26 in Latham, with a follow up with Dr. Lee after that.  The surgery that Dr. Polynice would do is something like this: they will cut a muscle out of my thigh (one that the body doesn't really use, kind of like an appendix of thigh muscles), somehow pull it through my pelvic area, and sew it in place between the butt to try to encourage healthy tissue growth and a full recovery.  Dr. Lee told me this is a major surgery (oh joy) but at this point, what other options do I have?  It's either I go on with a leaky tush indefinitely, or get a surgery done.  If I do need the plastic surgery one, I'm going to see if he can even out my other thigh while he's at it.  Maybe I can get a 2 for 1?  Never hurts to check.

BUT.  and this is a big BUT (and no, not mine) there is something called the VAC system.  It's vacuum assisted closure, developed for people that don't heal well (like diabetes and aids patients).  I mentioned it to Dr. Lee and he wasn't familiar, so I sent him the medical journal with the study in it, and he said he'll look it over.  What I'm thinking, if he was to do the exploratory surgery to make sure there was nothing major that was overlooked, and everything looked fine, then we should do the VAC.  It's taken people who previously had chronic perineal sinus (what I'm dealing with) and healed them in 18-25 days.  By keeping the area sterile, it allowed healthy tissue to grow where it wouldn't previously, and they are fine now.  Wouldn't that be nice?  I will gladly go through another abdominal surgery if it meant my tush would be closed/healed without having to cut into my thigh. 

I swear, at some point I'm going to change my name to Sally and get tattoos on all of my scar sites to look like stitching.  After that, all I'd have to do is find my Jack and life would be great!  Kidding.  Sort of.  :)

So that's all for now.  Will keep you posted as to what Dr. Polynice says.

In the meantime, I swear to you, come hell, high water, or surgeries, I'm going to do the dash again.  The only thing that would stop me is the Apocalypse at this point.  Which may or may not happen, starting May 21.  We shall see.  As I start to train, I'll post about that too.  Can't wait to do it!

Love ya,

B   

surgery on hold....for now...

So, went to see Dr. Lee first thing Monday morning.  You know that you're there more than you should be when 1, all the nurses recognize you by name and 2, the office and booking staff says "you're back already?  that's NOT a good thing." 

Dr. Lee examined me and came up with one of two situations to have caused what I went through on Saturday.  Because I'd had some pelvic pain prior to this happening he thinks that it was possibly a pocket of leftover fluid from the last surgery that got trapped inside and forced its way out through my reproductive areas as the path of least resistance out of my body, and that it was a one time thing and it will not happen again.  It was a little thicker than I think it would have been to have been just fluid, but that's just my opinion.  This is scenario #1, or the best case scenario.

Scenario #2 is the worst case, which is that there is in fact a fistula between the small intestine and reproductive areas.  If it is this case, it will in fact happen again, be it sooner or later, and will require major abdominal surgery to fix it.  We are all hoping this is not the case as it would set me back at least 8 weeks in recovery. 

So now we wait.  I'm back to not driving again, as we don't want to exacerbate anything.  I've had more "stuff" come out since I started eating again.  I'm not contacting Dr. Lee right away though.  I'm going to wait until it either happens again or I start having a severe amount of pain, whichever comes first.  It's beyond frustrating that my body just won't be normal. 

If anything changes, I'll keep you posted. 

Love ya,

B 

Oh. Crap. Literally.

Oh boy, where to begin....

I went for my follow up this past Thursday with Dr. Lee and am still not totally healing, so they switched me to a silver cream to try to speed up my tushie healing process.  I was going to comment on how I have a silver plated rear and how I hope it doesn't get stolen or something dumb like that, but time for jesting is over.  We were just going to wait and follow up in 3 weeks and hope for the best in the meantime.  As usual, my lovely body had other plans.

Friday I went to see a caterer with whom I've worked, had lunch there, helped out a bit in the kitchen.  I had a fabulous time out of the house for the day and really enjoyed being behind a knife and prep table.  As a thanks, he fed me an amazing calamari salad for lunch and sent me home with some food for dinner, 4 gourmet soups, thai noodle salad (that I helped make), moroccan couscous, and a huge loaf of freshly baked still warm bread.  It was a good day.  My parents and I ate, cleaned up, and I got ready for bed in anticipation of going to see my aunt for an overnight (Saturday to Sunday).  But....yeah...

I woke up Saturday morning feeling fine as always, went potty, and flipped out.  I had stool coming out of my vaginal area.  Ummm, in case you don't realize, I HAVE NO RECTUM.  This means most likely I have a fistula connecting my uterus to my small intestine.  Awesome.  I flipped and called Dr. Lee immediately, especially since I had just been up there not 2 days prior.  He recommended I eat very little and drink very little and to see him first thing Monday morning at his office, which I will happily do.  I'm actually eating nothing (think self imposed colonoscopy prep without the laxative) and sticking strictly to clear liquids.  I don't want any matter going through my intestine that may put pressure on a fistula and possibly cause leakage into my gut.  So all day yesterday and all day today I'm on water, Stewart's half and half (iced tea lemonade mix), and whatever else I want to drink that's clear, and I'll be seeing Dr. Lee tomorrow morning asap.

What we're all assuming is a fistula.  I'm hoping (but will probably not be so lucky) that he can do a dye test to diagnose it and not a barium swallow.  I hate barium, especially on a totally empty stomach of two days, not to mention the amout of pressure it causes inside.  Because fistulas don't fix themselves, at least to the best of my research and knowledge, this probably means surgery, probably Tuesday.  Oh joy.  So I'm intending on bringing my laptop with me this time and blogging from the hospital, morphine and all.  And as soon as I find out tomorrow just what my body has done to itself this time, I'll update on the specifics of what, where, and why. 

Prayers are appreciated, but most importantly for my parents and surgeon.  I can't believe we are all going through this again.  AGAIN.  I swear, they should have a frequent surgery program club card at Albany Med.  Wouldn't that be nice, have 4 surgeries, get a vacation on them for when you're healed up.  Maybe I should suggest that on their comment cards....never know....

Signing off for now and packing my surgical/hospital bag.  Will keep you posted when I know more. 

Love ya,

B

  

just call me honey buns.....

or was it sweet cheeks?  I just can't seem to get away from the lovely tush analogies.  Smearing a butt with honey will do that to a person.  Let's just hope I'm done using the medihoney by summer.  I don't feel like being chased by bees...

Again, I find myself back using medihoney to try to heal the surgical sight.  My antibiotics have been switched from dicloxacillin to bactrim.  I'm just not healing.  Still.  Frustration is abounding on all sides, from Dr. Lee because he performed the surgery by the book and my body hates healing for no good reason.  I asked Dr. Lee what the chances are that this could really happen a second time, and he just kind of looked at me with a "your body sucks at healing" look.  For the healing issues to happen once, especially with Crohn's Disease, not out of the realm of possibility.  For history to be repeating itself, especially when the second surgery was done so well and looked like there should be no cause for it not to?  Yeah....welcome to my body.  And trust me, it isn't as much fun as it sounds wearing sweats all the time. 

I'm staying in sweats because the tush scar tissue gets chaffed if anything tighter than sweats rubs against it.  I tried very loose fitting corduroy pants, and they put so much pressure on the area and chaffed so badly I couldn't wait to get back into sweats.  I can NOT wait until I'm finally healed up, and I'm hoping that will be sooner than later.  Oh, for skinny jeans and 4" heels again.   

I go back next week.  Will update after that.  All I know is we are not waiting a whole year again to see if I'll eventually heal.  We'll be a bit more proactive.

Friday, Bloody Friday....

Yes folks, it's that time of year again.  And what time would that be, you might ask?  The time of year that starts with yet another surgery!!!  In the immortal words of Winnie the Pooh, "Oh bother." 

It's been 11 months since my last surgery and I've not fully healed.  Dr.  Lee came in, hoping that the Christmas miracle had taken place on my backside, and much to his dismay I'm still not healed.  I was expecting this, and went immediately downstairs for my pre-op workup so I can just arrive and get cut on Friday.  We don't know the time yet.  They call Thursday at 1:30 to let us know. 

Here's where it gets interesting.  Most patients, including Crohn's patients, eventually heal.  The fact that I've not yet done so is both bothersome to Dr. Lee and myself.  He is a brilliant surgeon, so this isn't a reflection on his abilities and skill, but a reflection of just how random my body decides to heal sometimes.  His concern is that when he goes in, if he sees something major going on, he'll have to close me back up and I'll have to undergo another surgery from both the abdomen and tush again.   I'm really really hoping that's not the case.  I was quite pleased that my abdomen was finally healed, and do not want to open that Pandora's box again. 

Also, got a call from the hospital today saying the anesthesiologist wants me to go to the cardiologist tomorrow (based on my past history in my charts) to make sure all is okay.  I'm a bit concerned because they keep telling me my EKGs are fine, so I'm not quite sure what the deal is there.  Will post tomorrow with those results. 

So.  Friday.  Me, Dr. Lee, a scalpel, and anesthesia.  And another lovely round of purple hospital grade super glue for my butt. 

slightly less leaky heine....

Had yet another surgical follow up 8/30 with Dr. Lee.  Based on our previous experiences, he was very hesitant to enter the room for fear of my impending doom yet again.  Boy, was he surprised to see a partial smile on my face.  First time since before surgery in February.

After examination, he basically said that my heine looks like it's closed up a little bit, but still is nowhere near totally healed.  He mentioned that surgery is still a definite possibility at this point, but it's not so urgent it can't wait until I'm a little less crazy with life and work. 

Fingers crossed that the heine continues to heal up and surgery won't be needed. Will keep you posted in a month when I go back for yet another follow up.

Love ya,

B