Penny from Heaven

Day Five.   Pancakes.  With cranberry juice.  If there's one thing I've learned, especially with my intestines being on mandatory digestive rest, it's that high carb foods don't like to digest and go through without copious amounts of pain, and that highly acidic juices feel like my stomach is on fire.  But considering they hadn't brought me the menu for morning the previous night, they just sent up what was standard fare for that morning.  Really, I should have been on low residue for at least my first few meals but the kitchen didn't bother to find that out. 

In walks Penny.  From Heaven.  There is no better way to describe her.  It was my first time meeting my new day nurse Penny.  She looked at me and the uneaten food with a noticeable question mark on her face.  She asked me why I hadn't eaten my breakfast, and I told her it was my first 'solid' food in 5 days, and it definitely was not going to digest well at all.  She started chuckling, and immediately asked what I would eat, so she could send down to the kitchen for it.  From experience, I know there are some things that will agree with my body, namely hard boiled eggs, skim milk, corn flakes, and maybe a small muffin with some apple juice.  After leaving and placing my order, Penny returned to formally introduce herself.  I could instantly tell we were going to not only get along (she was laughing at my ascerbic wit regarding the food situation) but that she was going to be a great nurse.  She proceeded to ask me what had happened the night before, after reading my chart.  In my typical way, I filled her in on the lack of English communication which led to the blowing of my vein and the yelling at my nurse.  I promised her I wasn't too difficult but just didn't tolerate unnecessary i.v.s being put into my arm.  I also told her the problems I'd been having with my catheter, which led her to ask "well, why do you still have it in then?" to which I replied "beats me."  Penny promised me she'd get right on it and find out if there was a reason I couldn't have it still.  She also asked why I was still on the heparin shots since I was going to be heading home either later that day or the next, and again, I mentioned that no one put a dc on the orders.  Briskly, Penny walked away to seek out the answers to the questions she had just asked.  As far as I was concerned, she was the one that was going to get things done for me at this stage, since I was chomping at the bit.

A short time later, in came my breakfast tray.  Delish.  Nothing tastes so good as hospital food after a four day lack of food.  As much as I hate apple juice (after many years of using it for colonoscopy prep) it tasted very good when chilled and added with the rest of my breakfast tray.  I happily indulged on what seemed like a ton of food, careful not to eat too much for fear of not knowing how it would process through my body.  See, I had learned after trial and error over the years that anesthesia coupled with heavy duty pain meds and being npo for several days slows down digestion to the point of stuff not liking to process through and causing an inordinate amount of pain as my intestines wake back up.  So I chewed slowly and hoped it wouldn't kill me later. 

Penny returned with some happy news.  My catheter could come out.  Since they were going to be sending me home, they decided they needed to know if I could pee on my own.  That was the best news I could have gotten after the rotten night I'd had the evening prior.  She left, got some gloves and stuff, and deflated the cath balloon and removed it.  I asked, while she was at it, if there was any way she could also remove my drains.  They were in such awkward places and were making it uncomfortable to sleep and move around.  One was in my lower abomen, which I'd had before, and one was...in the crack of my cheek/leg joint toward the groin on the inside.  That one was killer.  Though they had it pinned up to my gown and boxers, it was the stitches that felt like they were ripping out a tad.  Penny checked and said they weren't, but boy was it uncomfy.  I asked how long they had to stay in, and she said until I had my discharge papers in order, since they wouldn't be able to re-install them in case I had to stay in longer. 

Penny just rocked out the rest of the day.  She was able to get the bolus i.v. removed since I hadn't been using it for the past 2 days, save for the one dose that the nurse accidentally pushed through my veins.  See, the bolus pump keeps a record of all times it's been used, to see if it's been therapeutically used or not, and when it was realized by Penny that I wasn't using it at all, she said 'why not just give that vein a rest?' and got orders pushed through to remove it.  Woot woot!  Honestly.  It was amazing.  Like being in a race car, and going from 0 to 100 in less than a minute. 

Free of my cath bag, I was up peeing on my own.  And I had one of my two i.v. poles removed.  If you had told me that I had won the lotto, I don't think I would have had any sort of excitement compared to how I felt in that half hour after both were gone.  Slowly things were being removed from my body instead of being put into it.  I went for a long-ish walk and enjoyed that too, without having two poles and a cath bag hanging from my walker.  Actually, I didn't even need a walker at this point.  I was pushing my solitary pole all by my lonesome.  It's funny--as much as I was still attached to things, I could see the progress I'd made, when noticing the others on the floor who were hunched over their walkers.  I seemed like I was lightyears better than they were, and it had only been a few days in actuality. 

I returned, got my sponge bath from mom, and got even more good news from Penny...the heparin was done! This was like a great belated birthday present.  Lunch showed up (overly grilled cheese, to the point of not being able to eat it) and a garden salad (holy fiber batman!) and some chocolate pudding.  I ate the soft part of the grilled cheese and the chocolate pudding, happy to be having food.  The breakfast from morning still wasn't really working its way through, so I was trying to drink water in addition to the apple juice to help move things along. 

Penny came back in before her shift was over just to chat.  She was a blast.  During the winter season, she also moonlit as a snowboard instructor at Windham Mountain, where I do the Warrior Dash.  We were recounting my hospital stay thus far, and the two of us were laughing hysterically.  I loved her.  She was just so down to earth and had such a great bedside manner.  She mentioned that I was possibly going to be discharged that afternoon, but we told her it wasn't possible as my dad was 2 hours away and couldn't get up there in time.  Happily, before she left, she told me to hold tight, since she'd be back tomorrow and be my nurse again.  Tuning into the Food Network, I watched the Paula Deen and waited for dinner to arrive. 

Mmmm.  Another grilled cheese, but this time edible.  It came with more chocolate pudding "parfait" (that's hospital speak for topped with whipped cream) and a fruit cup.  I ate out the melon and mom ate the rest of the fruit.  All in all it was a great day, except now I had to remember to pee and not call for someone to do it for me, but what a luxury that was :)  The only small problem was that they tried to give me my heparin shot during the night shift, but I reminded them that it had been dc'ed.  Victory.  Mom settled in with her dinner, I turned on The Cake Boss marathon, and eventually passed out.  Mom woke me up and said goodnight as she headed over to the hotel for the night to sleep, and I settled in for sleep, knowing I'd be going home the next day.

2am.  Lights on.  "We need a blood sample."  "Nope."  "Yes, we need a blood sample from you."  "I'm refusing."  "Do I understand, you're refusing to submit to the daily blood draw?"  "My veins have been abused enough.  I'm going home later today.  You do NOT need one last blood draw.  I'm putting my foot down and you're not drawing."  "Well, we'll have to note that in your chart."  ::giggle:: "Go right ahead!"  Lights off.  Victory again. 

Day 6.  Feeling empowered, when the residents came in at 6ish-am, they asked me why I hadn't gotten my blood draw.  I politely/sleepily/smugly reminded them that I was going home today, and had the nurse two nights prior not blown my vein, I might have been willing to be stabbed yet again, but since I'd had 7 i.v.s/attempted i.v.s in the last 6 days, that there was no way in hades that any more needles were going in, but instead they'd be coming out.  At this point, with not much in the way of pain meds in me, the sarcasm started dripping from the corners of my mouth and pooling on the sheets around me.  I bet they were not used to people like me on that floor, just speaking my mind at 6am.  But at that point I wasn't going to not stand my ground.  What could they do to me?  Nothing! 

Breakfast arrived.  More hard boiled eggs, corn flakes with skim, and an apple cinnamon muffin.  Mmmm.  Considering how well the prior day's breakfast processed through me, I figured I was safe with doing the exact repeat.  Penny arrived soon afterward, with word that I'd be going home definitely since I was self-peeing and keeping food down and outputting it as well.  Oh.  Happy.  Day.  Not for nothing, but after that amount of time in a hospital bed, without my cats, there is nothing like hearing you're going to be sprung.  Something like letting the inmates out of the assylum. 

Dr. Polynice had been in the day before, and said that he was very pleased with how I was healing.  Said everything looked perfect and that I should be back to my normal self in no time.  That thrilled me to pieces, but also made me want to get out that much sooner.  Penny told me she was checking to see if the paperwork had been filed, and in the meantime if she could get out my remaining i.v. and drains. 

Waiting.

And Waiting.

Penny returned.  She said she had paged down to the doctors to see what was going on, and that reconstructive had signed off on my release, but colorectal hadn't yet, and she didn't know what the holdup was, but to sit tight and she'd get back to me.  My roommate was driving her nuts too.  Apparently she too was to be released today, but was arguing with Penny about how to get home.  She kept telling Penny that her husband was supposed to come at some point, but she didn't know when, and frankly didn't care.  She was also, again, complaining about the coffee.  Really?  Penny wasn't the cause of it.  And how was it that Penny was the one who was supposed to brew a fresh pot? 

Penny actually came over, rolled her eyes a bit with a head nod toward the other side of the curtain and said 'I'm so sorry, I'll be RIGHT back and check again.  I still have the page down to them for the discharge papers, and the last I heard if they don't get to it today you'll have to stay in until tomorrow.'

WHAAA?!?  Really?  It's going to be that hard to obtain a resident's signature just to get me sprung?  Penny sensed the desperation in my face and voice, because getting sprung also meant that I could get my final i.v. and drains out, and she knew how much they were bugging me. 

Lunch got delivered.  Grilled cheese again.  Don't worry, the hospital DID offer more choices in food, I just kept writing in what I knew would sit well in my stomach.  Except for one problem.  I was fed up with grilled cheese and chocolate pudding by now since I was itching to go home after breakfast.  I did manage to nibble at the grilled cheese, but there was no way that chocolate pudding was going down yet again, which considering it's chocolate and I love chocolate, is almost unimaginable for me to be saying.  Penny returned with a surgical resident who had scissors.  Know why she had scissors?  I was getting my drains out, I was getting my drains out, na na--na na, I was getting my drains out.  Truthfully, at this point, I think they hurt more than the actual recovery from surgery.  When something is embedded deeply within, and the tissues have healed around it, and all of the sudden it's being pulled out from whence it came, it tends not to tickle too much.  But the stitches got cut, the drains got pulled, and I was almost home free.

Around 1pm Penny returned and asked just how much I loved her, with a big cheese on her face.  Could it be true?  Did she really get orders to get me sprung?  She informed me that it was all but a done deal, and that she could take out my remaining i.v. and I could get dressed.  I had to wait for a half hour after the i.v. was taken out to make sure it sealed over fine, and for the paperwork to be officially signed, sealed, and delivered, but in the meantime she read me all of the discharge instructions she had to help expedite things.  There is nothing like taking off the gown after that last i.v. is removed and putting on legitimate clothing.  Aaah.  A t shirt, comfy dance pants, and a hoodie.  I felt human.  I stood at the sink without poles or tubes and brushed my teeth like a human being.  No rinse and spit with a series of cups and the kidney shaped dish.  No worry about bending my arm and the i.v. line beeping.  It was a glorious feeling.  I did love Penny.  Bunches. 

About 2pm the final paperwork was delivered, and my chariot arrived.  I was plopped delicately in the wheelchair on my tush pillow (not donut, that would hurt too much) and whisked down to the waiting car in valet parking. 

Free at last.  Fresh air, green grass, changing leaves.  I know how prisoners must feel with their first taste of freedom after a long stay in the clink.  Now home to see my cats and dog and take a shower 48 hours later.       



   

The leaky vein gets the i.v.

Morning has brooo-ken, like the first moooooorning. Alarm bells are riiiiinging soon after dawn. IV is beeeeping, nurses aren't coo-oooming. Roommate complain-ing, over and o'er.

I love retrofitting songs to my liking. Maybe a bit too much. :) Anyhoo....

My arms reject i.vs. I've touched on this fact before, but it never ceases to amaze me when the nursing staff seems surprised that I've been warning them that my veins are going bad and then they do. It seems like a novel concept, like I'm psychic and can predict it. Either that, or since I'm the current occupant of my body, I know when things feel off kilter sooner than their technology does.

Morning of day four started out like every other morning. Obnoxious blood draw at unholy hours, residents rounding before 7am, asking you the same questions the residents had asked day before (and prompting me to bite my tongue from replying 'read my chart for the answers and let me sleep, will ya?'), and the arrival of the ever present clear liquid assortment tray. I don't know what I can stomach less, though, the thought of more tepid apple juice having to be sucked down to prove that i could hold down liquids or my roommate chewing loudly, belly aching that her coffee wasn't hot enough, her french toast wasn't perfect enough, and her eggs tasted a bit overcooked. Hello, I'm not allowed to eat. Could you keep your complaining about your legitimately solid food to yourself?

Shortly thereafter, the nutritionist showed up and asked what and how much I had eaten for breakfast. I pointed to the mug of beef broth and said, "What do you think?" "Well, haven't they sent you any solid food?" "Nope, I haven't been approved for anything yet by the doctors." "Well, how do they expect you to go home if they don't know if you can keep down/process through solid foods?" "Beats me."

She leaves. Day four begins like normal, with Mom coming over from the hotel attached to the hospital and starting the day. I had a whole new staff during this day, with not one nurse I'd had before on the previous 3 days. My nurse came in, took one look at my arm and said, "Does it hurt? It's quite swollen and hot, and it looks like your i.v. is going bad." Had it not been her first day with me, I would have blinked and said DUH, but considering this was her first look at my arm, I acknowledged that my arm was indeed hurting and swollen to about double the size it should have been.  Jasmine (my nurse) decided to run the rest of the bag that I had on the line, and then change it afterward.  After that, she was going to take it out and put in a new iv, even knowing how difficult my veins are.  The swelling just wasn't going to get any better and we both knew it.

Because my veins tend to be....fragile...Jasmine went and got a hot pack and wrapped my arm in a towel to get the blood flowing. I had ivs in both arms, so though we were taking one out of the arm, it had to go back into the same one again. The amount of bruises and bad spots already were making it difficult, and they couldn't put it above the one they had just taken out, or it would have continued to pump fluid down in the already blown section of the vein.  So Jasmine manages to find a small but functional vein, takes out the old iv and runs a new one with a bit of difficulty, but at least it will give my already overtaxed vein a break.  She notices on my other arm that the iv that was there was also swollen and hot, and asks if I want to replace that one as well.  I told her no, since that was strictly for the pain bolus that I wasn't using, and that I was going to try to keep that one intact for as long as possible to prevent yet another iv being run.  Thankfully she understood, and just let me keep it for the time being. 

The day progressed without incident.  The roommate was yelling at the nurses and sleeping with her tv on as usual.  I went for two laps around the floor with my trusty walker, UGGS for stability, and much to the envy of the floor, did NOT flash the general public.  We had rigged up a system a few years back with my original surgery (thanks to Carrie) with my black watch plaid boxers over the catheter and up on my legs covering my bum so that I didn't have to try to balance with a walker, a gown open in the back and flashing, and another gown draped on my shoulders to attempt to keep me modest. It was a beautiful system that served me well as I trudged along the corridors and made fun of the decor.  I did notice when I stood up to do my walk that my bladder felt full and my catheter collection bag seemed empty, but pushed the thought aside for the time being, just proud of myself for progressing as quickly as I was.

Upon getting back to bed (ooooh, fresh sheets, and they don't smell and aren't covered in my hair [I shed like a dog in springtime after surgery]) I was visited by a resident, who informed me that there was no reason I had to still be on clear liquids, and that the next morning I'd be delivered a food tray with real ::gasp:: food on it! As happy as I was to hear it, I had to refrain from informing her that going from clear liquids to a 'normal' diet isn't the best thing for my intestines, and figured that I'd just order things that were a bit easier on my system. I laid back down and was in pain, something I hadn't really felt in about 24 hours. It wasn't just pain, though, but pressure too, and no amount of rearranging my body seemed to be making it better. DING! My bladder was killing me. Again, I had reached the point in the hospital stay where my catheter had stopped emptying my bladder, and it was all backed up inside of me. Considering all that had been cut, stretched, pulled, unbent, and rearranged inside of me, a full bladder putting pressure on it all surely didn't feel like a hug from the Snuggle bear. Rather, it felt like a little gnome was trying to poke his way out of my bladder with a dull butter knife.


I paged and the afternoon tech and nurse came in. I explained my pain, and that I've dealt with it before. They seemed a bit incredulous, until they started manually manipulating the tube and surprise! it filled the whole catheter collection bag right up. The one guy seemed fairly amazed that 1, my bladder could hold that much at one time and 2, the catheter really didn't seem to be working. He graciously told me that if it happened again, to just page him and let him know, and he'd be back down to empty my bladder again. The rest of the day finished without incident, mom went back to the hotel, and I got ready for what I hoped would be a good night's sleep.

BEEP. BEEP. BEEP. Page #1 to nurses station that my i.v. was beeping and I needed a fluid change. This was around 2am, and the response time was slow. Page #2 about 10 minutes later, and I was assured that my night nurse (who I hadn't yet met) would be there to fix it in a jiffy. BEEP. BEEP. BEEP. About 15 minutes after it began, my lovely roommate pages the nurses station screaming about how my i.v. won't let her sleep. After me having to deal with her tv at all hours of the night and morning, after all of her complaining about everything, she really had the nerve to call the nurses station and complain about me? In rushes my nurse, who speaks very little English, doesn't turn on the lights and just starts pressing random buttons.

Oh. My. Good. Gracious. Know the bad i.v. that was still in my left arm? The one that we were nursing? The one that was only for the pain bolus and nothing else? Well, the nurse blew my vein. Instead of stopping the beeping on my other i.v. like I was trying to tell him, he just kept repeating "you in pain?" and hit a big bolus of the pain meds. Have you ever bruised yourself? Like a good whack on the forehead or arm, and you instantly feel the pressure as the bruise expands? Add in severe pain into an already bruised vein and I literally felt it blow in my arm. I started yelling, he panicked, and I insisted on him getting someone else after he told me that he could run a new i.v.  There was no way, considering he couldn't even understand what he had done wrong, that I was going to trust him to to put a new i.v. in my arm.  He sent out an urgent page for an i.v. tech, and in the meantime stopped the rest of the bag from going in.

Know what the kicker was in all of this?  Roomie was complaining, very loudly, that the lights were on over my bed and they were disturbing her sleep.  UHHH.....REALLY?!?  If she hadn't have paged for the urgent attention of my nurse, he wouldn't have rushed in and pressed a bunch of wrong buttons and blown my vein.  And if he hadn't blown my vein then there wouldn't be an i.v. tech in there at whatever hour of the morning with the lights on running a new i.v.  So thanks, roomie.  And by the way, you have NO room to complain.  None.  So suck up the lights being on for a half hour since you're the one that caused it.

Rant over.  Stepping off of my soap box.  But you get the point.

Once the new i.v. was run, my nurse put his tail between his legs and slunk away, sending in assistants the rest of the night when my catheter needed to be drained, too afraid of me yelling at him again.  I can't say I was too happy to have the new i.v. in, as I hadn't been using the bolus of pain meds anyway, but considering it was the middle of the night they couldn't get orders to discontinue the line.  Eventually, catheter re-drained and new i.v. run, I passed out for a mere few hours until the residents came in to do their rounding.    

The Roommate from H-E-Double Hockey Sticks

End of day three, I was still in pain at this point, but at least it was being better controlled by the medications.  I had done my lap around the floor as I'd promised, and exhausted, got back into bed.  Mom was there, as she always is by my side when I'm hospitalized, and would help the nursing staff in whatever was needed with me to get me clean and comfortable. 

The nurses always offer to give me a sponge bath of sorts.  Having been through them at other hospitals, I know that they're not always as gentle and understanding as needed.  With Mom, I know that if I say "Stop, it hurts" she knows I'm serious.  She's gotten used to seeing my hairy arm pits and hairy legs after surgery, and I don't feel self conscious about it.  Yeah, I know nurses are used to seeing that sort of thing, and used to bathing patients, but with Mom I know I'll have exactly what I need without worry.  So bathed with clean sheets and exercised  for the day, I'm assisted back into bed.  The dinner tray had been brought. Again, clear liquids on the tray. I drank some juice, but I did not want the rest of what was offered, so I pushed the tray table off to the side, Mom turned off the lights, and I started dozing in and out of sleep.   

Mom had the tv on low so she could keep up with what was going on daily.  If you know me, you know I can sleep with full lights on, tv blaring, on a train in the middle of an accident, and would still not wake up.  Compound that with pain medications that cause drowsiness, and I'm down for the count as long as I can find a comfortable position.  Vitals were done yet again, waking me back out of my slumber, but I passed back out quickly.  Technically speaking, visitors have to be off the floor by 9pm, but since we were quiet and I was young, the nurses were generous in letting Mom stay in my room.  They had one of those chair thingies that pushes back into a sleeping surface of sorts.  I won't call it bed because that would be too nice.  But it was sufficient.  After sleeping in it for 3 nights in a row, I urged Mom to go to the hotel attached to the hospital to actually get a good night's sleep for once and reluctantly, she complied. 

My tv went off, and around 11pm I had one of my last vitals checks of the night and figured I was good for the time being.  I found a comfortable position at last.  Between the pillows provided by the hospital and the thick memory foam pillow thingie Mom brought for me I was able to squash, rearrange, and mash myself a little nest in the bed.  I also prefer sleeping almost vertically, so I put the head of the bed upright.  For some reason, it puts less pressure on my abdomen when needing to get in and out of the bed.  The nurses always urge me to lay down more flat, but I simply can't. So anyway...lights off, tv off, getting a few precious moments of shut eye when...

Am I dreaming?  Am I back in the OR?  Why is it so bright all of the sudden?  I open my eyes, look at the clock which reads 1am, and realize my roommate has turned on all the lights to her half of the room and turned her tv on full blast.  Apparently she couldn't sleep and decided to entertain herself at my sleeping expense.  Had there been a bedpan within reach, so help me, I would have launched it at her.  Even in my weakened state, I'm sure I could have at the very least gotten her attention with it.  But not wanting to make waves, I rolled over, tuned it out, and went back to sleep.  When the nurses came in mid eve to do vitals, they had her turn it all off, so I felt vindicated.  Wham!  Lights on again.  It was the 2am blood draw.  They turned all the lights on in the room to do hers!  But when it came to doing my veins, they shut her lights off so that she could relax.  Really?!?  With the selective and split lighting system in the hospital rooms, there is no reason they couldn't have done that with me too, but apparently she asked that the lights be turned fully on to make sure they could see.  Ugh.  Arm pricked, blood drawn, I pass out again.   That is, until she turned it all back on again. At 330am.  I'm not prone to violence (well, sometimes when drivers don't use their turn signals I yell) but I wanted to take my i.v. over and jab it in her arm so that my pain meds would make HER drowsy.  What gave her the right to ruin my precious moments of sleep?  Again, the nurses turned her set off when they realized it was on. 

Was I really going to have to graciously put up with her for the rest of my duration?  When sleep is a precious enough commodity, and is so instrumental in healing, could I afford to have her blaring the tv during what were normal slumber hours?  Truly, in my 20 years of being in and out of the hospitals, she was the real roommate from H-E-Double Hockey Sticks.  Yes, the roommate from hell.  And if you think that label isn't justified just from turning the tv and lights on, I promise you, she only gets worse. 

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.....

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