in the illustrious words of Monty Python...

And now for something completely different. 

I blog for family, friends, and self.  It's not necessarily therapy for me, but I've been hoping over the year I've been doing it that it wasn't just people I knew who had been reading it and upping my visitor count.  I've hoped that someone would find my blog who might be inspired, uplifted, encouraged, able to be helped in any way.  How excited was I that I got an email the other night from a gentleman who stumbled upon it through google searching. 

People ask me frequently if I ever blame or question God for what has happened to me over the years.  They say I have a right to be upset, and wonder why it isn't time for someone else to deal with an issue and for me to have a break.  For everyone who has questioned, I always reply the same.  If God can use me as a witness to anyone, so be it, and that I'm sure there is someone out there who is worse off than I.  And for all who think what I've been through is a lot, the man who contacted me puts me to shame.  I won't disclose personal details, but it's pretty remarkable that he is alive to even speak with me regarding his case. 

Basically, he was diagnosed with Ulcerative Colitis in 2010, they tried every form of medication, and within a month he was in surgery.  They created a J pouch (common for Ulcerative Colitis), it went bad, and there were complications.  He had 4 major surgeries within a few weeks, including 3 in 3 days, went septic, went hemmoragic, ended up needing 30 pints of blood transfused, had a lung collapse, ended up on dialysis, and somehow managed to stay alive.  But through it all he managed to keep his strength and faith in the Lord.  Here is someone, wife, 5 sons, who could easily question God, blame God, get angry at God for the burden to himself, his family, his church, but instead found the blessing through it all.  His testimony astounds me and makes me feel remorseful for every time I've felt even the slightest bit sorry for myself.   

Why did he contact me, you might ask?  Well, come to find out he's not healing either from his last surgery, and will be undergoing the same surgery I will but a bit later on.  He too will be getting the gracilis cut out and stuffed in places unmentionable.  He too will have the worry and wonder of whether this one will be the one to work, or whether he'll be looking at more surgery down the road.  As nice as it is sometimes to know I'm not the only one going through it is as sad as it makes me to hear he is facing the exact same thing.  I would never wish this on my worst enemy, let alone a loving husband and father of five. 

I will be going through surgery before he, and hopefully will be able to give him pointers on the recovery, and be able to encourage his spirit and lift him up in prayer.  Afterall, who knows better than someone who has just gone through it? 

So every time you think of me, think of him too.  Think of how far he has come, and yet how far he still has to go.  Think of what he has to lose and how he still has chosen not to.  And though things in your life might not seem great at times, remember there is always, ALWAYS someone worse off than you are.  Life will work out.  Things will turn around and look up.  Just trust in the power of the Lord and put your faith and hope in him. 

Much love always,

B

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

Oh.

My.

Word. 

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

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

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

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

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

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

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

Love ya!

B

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

I know women love shoes but...

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

Yup.

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

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

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

Much love,

B

aren't they purty?!?

which burns more calories...

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

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

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

BUT...

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

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

That's all for now :)

B

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

Six weeks and counting...

So, here goes nothing.  I signed up for the warrior dash back when I found out about it, with all hopes that I would be running it no problems by the time it arrived on 9/18/10.  I figured, since I had 5 months left to train, that I would be in phenomenal shape by the time it arrived, and that I'd be able to conquer the dash no problem.  Well, here I am, 6 weeks away, and still haven't begun training.  Why, you might ask?  It goes something like this...

I was diagnosed with Crohn's Disease in 1991, and have been dealing with it on and off for the past however many years.  It's as much a part of me as I let it be, and I've tried not to let it limit my life.  In 2008 my intestine perforated, and I underwent emergency surgery to save my life, as I had severe peritonitus and gangrene internally since they estimate it perforated a full 3 days before I actually felt it.  As a result of that surgery, I ended up with a permanent colostomy, a great new outlook on life, and felt ready to take on the world when it was over. 

They left in my rectum, knowing that it was in bad shape and needed to come out eventually.  This past January 2010 my lovely remaining rectum ate through what was left of my large intestine and fistulaed.  Once again, I found myself undergoing an urgent surgery to take out the diseased rectum bit and switch my colostomy and permanent ileostomy.  I went through surgery, started recovery, and should have been healed by now.  Problem is, 6 months later, and I still have leaky heine.  So...

Now you can officially call me sweet cheeks.  We're filling the hole that won't heal with Medihoney, and hoping that will foster the healing process.  I don't know though.  I have one month left until the surgeon wants to go back in and see what's been going on.  Fingers crossed.

In the meantime, I signed up for something I heard about called Warrior Dash.  It's a 5k on crack cocaine.  Translation:  a 5k, on the side of a ski slope, with an army ranger style obstacle course peppering the run.  I figured it would be a good way to show the world that having an ostomy doesn't mean not living life.  It means I can do everything you can do, I just do it with a bag. 

So, with only 6 weeks to go and considering I haven't even started training yet, I'll keep everyone posted on how it goes.  My friend Mehul has developed a workout plan for me to try that is lower impact to not impede healing, and yet should still whip me in to shape.  Hopefully.

And on September 18, 2010, I will be covered in mud, soaking wet, leaping over fire just to prove that I CAN run the warrior dash (or walk it really fast).  I can't wait to earn my fuzzy viking helmet!

Much love. 

B

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