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.

my butt would make j lo jealous

it's still so swollen.  But I digress.  Let me start again at the surgery.

So, as you well knew, I went in on Friday for surgery of an unknown type since we weren't sure what was wrong with me.  My understanding was that Dr. Lee was going in to excise the tushie and find out why blood and puss were still coming out after a year.  It was supposed to be a half hour in and out surgery.  It was a little different...

At 8:30am on Friday January 7, 2011, I went back under the knife.  What was supposed to be a quick surgery ended up being a bit more involved.  After going in, Dr. Lee found out there was an infection in my anal sinus.  What's that, you say?  I have no clue still, since I didn't know there was one there.  According to wiki: http://en.wikipedia.org/wiki/Anal_sinuses .  The surgery ended up taking an hour and a half because the infection was longer than he anticipated.  I spent a little bit in recovery after surgery, waiting for my room upstairs.  Apparently, Dr. Lee was thinking of sending me home same day.  My body had different ideas. 

They took me upstairs to my room, pumped full of dilaudid (since I told them I have a narcotic intolerance to morphine).  What a mistake!   I got upstairs, they told me I would be fine, had me on the pain killers, the zofran, and the phenergan for the nausea.  The problem is, the zofran wore off and the phenergan was supposed to be administered into my iv line with an automatic pump thingie into which the plunger full of medicine was placed.  I had the fortunate luck to have a very bad nurse who never bothered to see if the pump thingie was working.  It wasn't.  I was without any anti nausea medicine for a while, and that, coupled with one of the strongest narcotics (stupid doctors for giving it to me) and I ended up barfing most of the night on Friday.  If there was one blessing in all of that, I was given chocolate chip cookies with dinner, so when everything came back up it tasted like chocolate instead of bile. 

The next morning at an unholy hour of 2:30am, the phlebotomist came in trying to draw my blood.  I told them to go away, they weren't allowed to since I was supposed to go home on Saturday and didn't want yet another blown vein.  Surprisingly, he listened.  Yay me!

At 6:45am, the residents rounded and told me I'd be going home, in spite of the barfing.  When the rounding doctor came in at 7:30am, they told me that I would NOT be going home since I couldn't keep food down, and they kept telling me they weren't sure why I wasn't able to eat and keep food down.  I kept insisting that if they changed my pain medicine to a non-narcotic, particularly toradol, which is essentially extra strength Motrin in iv form.  Gee, once they switched me they were able to get both my pain under control and do away with the nausea meds, and I kept down food.  Plan then was to go home on Sunday.

Sunday morning (2:30am again) my newest night nurse came in and turned on ALL the lights.  She almost got decked, and I have a mean right hook.  She insisted on checking my ostomy.  I didn't have surgery on that!!!  I kept trying to tell her, and she insisted in looking at it.  Then she looked at my butt and left.  Thankfully she did not come back in for the remainder of the morning/evening.  Blissfully, I was discharged Sunday after that, and sent home for post op care.  More to follow...

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. 

I finally have pics!

So.  I finished the dash in one hour, one minute and twenty seconds.  Yes, their timing is that precise.  I was happy with it, though I'd love for it a better time next year.  THAT'S RIGHT.  I SAID NEXT YEAR!  I already signed up for the Warrior Dash 2011 in New York at Windham again for next year.  I guess I'm just that much of a glutton for punishment, but this time I'll have company.  I know one man from church is running it with me next year, Saturday at 9am.  I'm hoping for more to join :)  But if you can't, that's fine too.

There was a professional photography company there who posts pics according to your bib number.  Here is me, running the warrior dash :)  http://www.brightroom.com/view_user_event.asp?EVENTID=63852&BIB=96943&LNSEARCH=1&PWD=

enjoy.  seriously.  I can't wait for next year. 

Will keep you posted as I start training again.  Oh, and I'm on the surgery docket for January again.  Joys.  So I'll keep you posted on that as well. 

Happy Thanksgiving and love to all.

~B

IT'S HERE!

IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE! IT'S HERE!

wish me luck :)  9am start time, can't wait.  as long as i survive, i'll do a post wrap up follow up.  hopefully it won't be too bad, as i've been run/walking 2 miles on sand in 20 minutes.  I do hope I'm in decent enough shape to finish.

much love,

B

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