Beware the Heparin Vampire

So poor Larry and Shelby.  I paged for them to come since my bag didn't just spring a leak, it totally let go on the side of my body, thus covering my gown and the bed in well....contents.  And since I was still on clear liquids, I do mean cover as it was like water.  Larry comes in, asks what is needed, and I tell him what I normally use for my ostomy.  He goes to the supply cabinet and comes back with the available wafers that they have.  They were big enough for a person with a 2xl stoma.  They were huge!  They also had the tape border on them, which my skin reacts to, so we had to modify just a bit by cutting off the whole tape edging.  Shelby came in for the assist, bringing towels to put under me as the stoma was continuing to leak, and got a heat pack to warm up the wafer at my encouraging.  See, when I was originally hospitalized back at Vassar, I was told by my home health aide (right after surgery) that the best way to get a bag to stick is to warm up the wafer by rubbing it between your hands for between thirty and sixty seconds, with the backing still on of course.  That way the wafer is about the same temeprature as your skin and sticks so well indeed.  So with lack of range of motion on my arms and an inability to warm anything up, Shelby got the heat pack so we could put the wafer on it to 'self warm.'  In addition, they found me adapt barrier rings by some stroke of luck (which help prevent erosion from stool on skin and are my personal God send), and we managed to get me cleaned up, the new bag on, and new bedding in the course of about twenty minutes.  In hospital time, that's record speed!  I think that there probably aren't too many ileostomy patients that find their way onto the spinal unit, so it was a crash course for all of my nurses in dealing with an ile with a mind of its own.  I'm pretty sure some of the nurses hadn't handled them before, but knew what to do from reading it in a textbook or hearing it in a lecture, but it's always good to have the hands on experience.  Larry, bless him, found out the proper size I used and put an order in for the correct sized supplies to be sent to the floor to have on hand for the next time it fell off.  They even were to be put in my room number specifically.  I really felt like I was getting 5 star treatment, at least as far as my ostomy was concerned. 

Larry came back in with my evening dose of heparin, the bood thinner I was on to keep clots from forming in my body since I had been immobile for so long.  Normally they can do it in your belly so it hurts less, but considering my was covered in bandages, the only option seemed to be my right thigh.  They squeeze a chunk of your thigh, plunge the needle tip in, and give it a good push to get all of the medicine inside.  It had become somewhat of a joke between Rich and me regarding the shots, as my skin scars so easily, it was beginning to look like a pattern of some nature.  After the heparin vampire did the first few puncture marks, they varied around my leg.  We were wondering if we should go for a rousing game of connect the dots or see if we could do constellation patterns.  They hurt like the dickens going in, burn for about three minutes afterward, and at least on my body, left marks that didn't go away, but at least I wasn't clotting internally.  That, with my history, is a blessing.

See, back when I was in college I got very bad cellulitis in my ankle during the last week of school.  It got to the point that I could no longer walk on my foot, but moreso hobble.  When my parents came to pick me up and bring me back home for the year they found me sitting in my room with hardly anything packed.  What was upset on their part quickly turned to concern when they saw that my ankle was about three times the size it should have been, and it was on fire and I was in severe pain.  They hurridly packed me up, brought me home, and I went to my podiatrist who said I'd need to go to the doctor the next day.  By the next morning, I had developed a blood clot in the tip of my thumb, and ended up being admitted to the hospital for ten days.  Since then, I'm considered at risk for clots, hence taking the extra precaution with the heparin to make sure it didn't happen while lying flat in bed. 

I was also getting used to having a new roommate.  She was an older lady, somewhere in her 70s if I had to venture a guess.  She was a bit of an add one.  She was dressed in a sweatshirt and sweatpants.  She had absolutely no i.v.s on her at all.  She took two pills orally per day and complained about everything.  And I do mean everything.  I just had no clue how bad she would be as a roommate, but I'd soon learn, she was the antithesis of the nice older lady.  But day three came to an end, or so I thought.  Hoping to get some sleep, we turned off the lights, and for the first time by back was pain free.  I slowly drifted off to a semi-conscious sleep, happy that I wasn't on the verge of tears. 

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.....

she'll be climbing up the mountain when she comes.....yee haw!

Oh.

My.

Word. 

What have I gotten myself into again?  I've reflected several times this year on having done the dash last year, and whether I would have actually gone through with it if I had known what I know now about it.  Truthfully, I was as unprepared as a person could be (even though I thought I was) and yet somehow with no partner, pushed through and finished.  From what I can gather, it was only by the grace of God.  And my sheer stubbornness. 

Rich, Sarah, and I have started walking Old Indian Road, as it's pretty much a mountain doppelganger to Windham, just shorter.  Starting in mid May we walked the hill once up and once down (it's 3/4 of a mile each way) after church.  After almost passing out with the extreme heat we'd had, we've now switched our time to early Saturday mornings.  Throughout June we have been walking full up, halfway down, back up to the top again, and then full down, which is the equivalent of 3/4 of the dash.  Thing is, we're doing it with wrist and ankle weights on, so that when we actually get ready to do the dash it will be easier on our bodies.  Talk about ultimate strengthening.  Or just being plain nuts.  Either way....

We're able to do do the up, half, half, down, in 40 minutes, which isn't terribly bad with weights on.  What I'm hoping is to be able to knock a few minutes off my time from last year.  Again, though, having had surgery in Jan, as long as I finish I'll be a happy happy girl.  I'll see if I can do a vid this Saturday and post it so you get an idea of how steep the hill that we're training on is.  It has this one point where we kind of have to hike it or we'd roll. 

The awesome thing is, I've resumed chocolate milk after exercise mandate, so we all get to thoroughly enjoy Stewart's chocolate milk upon completion. 

What we're going to do is round out June with the full, half, half, full.  We'll do July with two full ups (we'll do a car exchange thingie to make it as realistic as possible) followed by two full downs.  And for the first week in August, we'll take off the weights and see just how fast we can do the whole thing start to finish, knowing that we'll be running on on August 13.  Well, Rich and I will be running it.  Sarah is just doing the training for fun, but says that next year she'll run it with us.  Next year, though, I'm threatening both the dash AND tough mudder as long as I don't need yet another surgery....

So.  I'm going to start running the smaller hills around my house again.   I've clocked it, and I'm coming in at 30 seconds faster than last year on my mile, at 9:30, so I'm a bit encouraged about that.  And though I plan to hike up Windham this year and not kill myself attempting to run, I know I can run any little flats and the full downhill to make up time, and that excites me. 

Have heard I haven't updated this enough lately, so I'll try to start posting weekly with run updates, training tips, etc.  OH, and I went to my first ostomy support group meeting.  I'll blog that separately next, but how very interesting. 

Love ya!

B

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

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   

I know women love shoes but...

is it really possible to be in love with a sneaker?  Truly in love?

Yup.

I am not a runner, nor have I ever claimed to be.  Running is typically the furthest thing from my mind.  For years I've driven past runners and though of how tortured they looked, and vowed I'd never be one of them.  Well, thanks to the dash I'm officially one of the running population.  And this is where my beautiful shoes come in to play.  I did my research, like the good nerd that I am, and found that one of the most reasonably priced and yet comfortable/durable/liked sneakers was the Rockridge by Montrail.  In the category of running shoes that are designed for trail running, which I will be doing, these are not only the cheapest (not my deciding factor) but so highly rated that I had to take a chance on them. 

I had been running in walking sneakers up until they arrived, which were hot, stuffy, and a bit uncomfortable.  As I ran I couldn't help but think that I looked as tortured as those I saw and at which I had guffawed.  My wonderful Rockridge kicks have kept my feet cool and fairly dry in spite of my sweatiness.  I'm not saying they will make me any faster, which they won't, or make my running technique any better, which they won't, but by golly are my feet comfortable.  If I'm going to be participating in this tortured activity called running, I might as well keep my feet happy and thereby keep me happy.  I can't say enough about these shoes.  And it doesn't hurt that I found them for 59.99, got a 20% discount, and the grand total with shipping was less than $55 bucks.  Considering they're retailing everywhere else for much more, I'll take it!

As I continue my training, as we enter the "one month left to go," I'll keep you posted as to whether I continue to love them as much as I do now.  As long as they keep my feet cool and support me on all terrains, I can't see why I wouldn't love them.  Who knows, I might just make this running thing a habit.  Might.  ;)

Much love,

B

aren't they purty?!?

which burns more calories...

Running and resistance band workouts, or chasing after a 2 yr old and getting set up for tour groups and brides in 3 inch heels? 

I'll give you a hint.  It's the latter.

This weekend kicked my butt.  I had every intention of working out on Sunday, but after my Saturday, my butt was wiped.  I started my Saturday with dusting and vacuuming the bridal suite at Benmarl, getting it all ready for the bride to arrive.  A quick change in the office, and I was out of my yoga gear and into my business attire, 3 inch heels and all.  I spent the remainder of the day carrying cases of wine, cases of glasses, getting any necessary things for the tour groups and wedding, going up and down hills, and up and down the cellar stairs.  I also had three bridal appointments, which meant showing the property around again and again, and again, and not taking a break.  With only a small breakfast and roast beef wrap for lunch, I'm pretty sure I burned up more than I ate on Saturday.  What I didn't count on was being so beat on Sunday that I didn't get in a workout at all.

BUT...

  since we are babysitting my 2 1/2 year old nephew, it's not exactly like I had a leisurely day off.  He is a very active child and chasing after him, carrying him up and down the stairs (he's about 28lbs), and generally keeping busy I think exempted me from a workout that day too.  It's so worth it, though, when he turns around and says "Auntie, thank you" with the biggest smile on his little face.  Oh, to be 2 again... 

Hopefully I didn't get too set back in my training.  With only 4 weeks to go, I need to get totally in to training mode once he's gone.  Saturdays will continue to be crazy with weddings and parties right up until I run the dash, so I'll continue to forgo working out on those days.  Still alternating with my sprint/walks and resistance band workouts for upper body strength.

That's all for now :)

B

http://www.warriordash.com/
http://www.ccfa.org/
http://www.windhammountain.com/