Its
a lifestyle choice, often made my mistake. For whatever reason,
people end up doing this to themselves. Whether by over-committing,
working to stay afloat financially, trying to please people or just
failing to appropriately manage time, it happens. When people do this
they end up tired, without energy, and yet pushing themselves
continually beyond their limits. They burn their lives to the ground
before they realize it, and don't slow down until something MAKES
them. I have been guilty of doing this from time to time in my own
life.
“GET
AHEAD OR PLAY CATCH UP”
For
me I think it happens because I'm constantly trying to find balance between carrying on
with a normal-ish life while living in unwanted chaos. Also due to the fact that I'm usually stuck between “playing catch-up”
and “get ahead” financially. Its pretty easy to fall behind on
bills when you are really sick, hospitalized, etc... Due to this
fact, I've taught myself to work when able. Sadly enough I've
learned to push through feeling crummy to keep fuel in the gas tank.
I've continually had to work hard to save up for the next time I fall
apart. The lesson I've learned is to get ahead, before the next time comes when I fall behind. Side note- It really sucks to try to get ahead while health is
going downhill and there's nothing to be done to stop it! Its a
stupid cycle, but with a chronic health condition, its reality.
Anywho, finance is only one contributing factor in my candle burning
at both ends.
BUSYNESS
Another
partial contributor to my candles getting low is busyness... Here's a
quick preview of how my week goes. Four days a week I work at my desk
job. On surgery days I'm usually there 10 hours. Tuesday nights
are busy with bible study and Wednesday nights I help out with a
youth group. Weekends I wait tables at my other job and Sunday is
church. Somewhere mixed in there I try to find time to hang out with
friends, and my husband, etc. After all my responsibilities I have one day a week left to
relax. Until recently I was also working on my day off as well. I
was exhausting myself without ever realizing it.
ACHOO!
Like
I said, people usually over-do it until something happens and makes them slow down. For me that was last week. I caught a nasty cold,
which took my voice for a few days and kept me home from work. So maybe it takes a nasty virus
to help me remember to take it easy. We aren't meant to be able to go-go-go for seven days straight, week after week, month after month. I've been trying to remember to
only do what I am called to do and know its okay to say no to
everything else. Its funny people often say, “Take care of
yourself.”, but don't seem to mean it. Yes, they want you well, but
also want you to be involved with all these things. ATTENTION: My
candle is meant to be a light to other people, but I better not be
burning it at both ends, or I will have no candle left to burn!
SABBATH
The
Bible tells us that in 6 days God created the heavens and the earth
and on the 7th
day He rested from all His work. He took a break and chilled out. He did this not because He was
tired, but to set an example for us to follow. He knew mankind's
limitations. He know that if we didn't allow ourselves down time to
recharge, the outcome would not be good. “Sabbath" simply means "holy
day", or a day of rest, set aside to honor the Lord. A day of rest and worship? --sounds awesome! He gave me this command because He loves me! Yet I often forget that He created this for my own
benefit, so I don't burn out. The bummer part
is, I forget this like every week. I commit to things I don't
have time for, compulsively organize, etc, and forget to take a Sabbath
day.
MY SWEET ESCAPE As this song by Run Kid Run says, God longs to fuel the fire beneath these tired bones! His presence is a refuge I CAN'T create.
Am I allowing myself to run back
to Him? Or am I just burning my candle by both ends, week after week? Gotta protect that "set aside day" and soak up that day of rest!
People often compare their own trials
side by side to mine, and I must say I really DISLIKE that! They say
things like, “What I'm dealing with is nothing like what you've
been through.”... as if they're demeaning their own struggles.
People, take me off that pedestal and stop and holding my
difficulties above yours, please! I am glad to offer a little
perspective, but in no way do I want to minimize what my friends and
family go through! Just because something is “minor” does NOT automatically make it an easy thing to go through! We are all given
our own battles to fight in life. Let's all just remember that we're here to encourage each other along the way. =) So if you have a bad
day, and I ask about it, I actually want to know. I'm not going to be
like, “Oh reeeeally? You wanna hear about a real bad day?”...and
then go off on some random tangent about crap I've been through. No, I
promise I won't.
AWKWARD COMMENTS
I think that when people make certain
comments, they're really meaning something different. For example, “I
couldn't handle going through what you've been dealt.” - People have said this to me often. I appreciate
the compliment, but honestly I don't know how to respond when someone
says this to me. It feels super awkward! I am always tempted to
respond with, “Yes, you could because you would have to!” Haha! Seriously, when
some big health issue pops up in life, you either step up or check
out. Period. I think what people really mean is that they would
never WANT to have to go through all I've been through. And I do agree...given the choice, I'd take a free ride down the healthy road of life
too! =)
Another comment I get a lot is, “Oh,
I sure know I couldn't live like that.” -referring to the way I
eat. (low sugar, low fiber, no fried foods, no gluten, etc...) Again,
I think what people are really saying when they make these comments
is that they would never WANT to live this way. I must say though
that when you are faced with either doing something or being in
constant pain/hospitalized, the choice becomes clear and there just
isn't any looking back. (*Ahem* except for when everybody around you is eating pizza or your boss brings Starbucks in for everybody at work...then truth be told I feel left out, get pouty and have an internal pity party.) Haha
“YOU ARE STRONG”
Some people seem to be under the impression that all my struggles have made me some type of super hero or something. (Yes, I've been known to wear a cape snowboarding, but that's beside the point.) I hope anyone who's ever seen me try to actually lift a weight can find humor in the photo below...
Although I've been through quite a bit of turmoil and I'm still standing, that doesn't make me strong. Yes, my trials have definitely refined my character. They've taught me perspective. I know better who: my identity is found in the Lord. Please let it be known that HE has been the source of my strength.So in all reality, its more like this:
Glory
to God for every resolve, every answer to prayer and every single
ounce of spring in my step! I
am just a sinner, holding onto God's hand through whatever
comes my way. When tragedy hits, we can either run TO or away FROM
God. Jesus
definitely provided what I've lacked on my journey and enabled me to
carry on when I was ready to throw in the towel. When
I was weak He gave me His strength to press on. He is the One who
keeps wind in my sails and keeps my boat afloat. Christ has never
left my side through all life's distress. I know that some people might think that being dependent on somebody else would make a person weak. With the King of kings though, its different. Its freeing to rely on the One who invites us to bring Him our burdens and carries them for us with such ease.
A
GUY NAMED PAUL
The Apostle
Paul was plagued by “a thorn in his flesh”. This thorn was some
sort of hindrance, which caused anguish. Paul asked God many times to
take it away. The Lord's response to Paul's plea? - "My grace is
sufficient for you, for my power is made perfect in weakness."
(2 Corinthians 12:9) Paul
eventually grew to view the thorn's presence as a way of keeping him
humble- of remembering he can't do life on his own. “Therefore I will boast all the more gladly about my weaknesses, so
that Christ's power may rest on me.That
is why, for Christ's sake, I delight in weaknesses, in insults, in
hardships, in persecutions, in difficulties. For when I am weak, then
I am strong.” (2 Corinthians 12:10) Paul had figured out that when
he was at the end of himself, he was relying on God's power.
EMERGENCY
ACCESS ONLY?
I went on a walk the other day and came across this sign. BTW its incredible the number of times the Lord has spoke to my heart through street signs...Anyway this sign really got me thinking:It is far too often that mankind only seeks God when life is in shambles. Often
when we are at our lowest of lows, we cry out to the Creator. We want Him
to come rescue us from our misery, patch our life up and take away
the pain. That's all good stuff, because the Lord REALLY loves us and
wants to be our Helper. However, if that's the only time we are
reaching out for His hand, then what's the point? What's the point of
asking God for His help and then once everything is all peachy keen, forget about Him?? Seriously, how sad! Its almost as if
we don't take God seriously...or at least we take Him only seriously
enough to believe Him in times of crisis, but not in times of peace. How quickly we forget the One who saved us.
WAITING WITH OPEN ARMS
We think we can handle
life on our own if we just keep our chin up. We are strong enough, smart enough, etc, right? In all actuality, maybe we can keep that up for a while, but sooner of later, our world comes crashing down. And guess who's still there, non-judgmentally, waiting with open arms... I am so glad we don't have to walk this life alone! God will love us no less whether we choose to walk AWAY or walk WITH Him, but doesn't the choice seem obvious?
I thank God for the consistency of His character, despite all the inconsistency of mine!
My
body, mind and emotions have been through the ringer this past year.
Time and time again I've been pushed to the point of giving up, of
wanting to just quit and scream from the top of my lungs, “I'VE HAD
ENOUGH ALREADY!!!” There were certainly times when all I wanted to
do was disappear. I just needed a flicker of light to give me
hope...just one good day mixed in with all the bad!
"NO ONE SAID LIFE WAS FAIR"
My
grandpa, Ken Bowersox, always said “No
one said that life was fair.”
- and boy, if anyone had a reason to be frustrated with circumstances
in life, I'd say he had one. After suffering a stroke, half his body
was paralyzed for the last 12 years of his life. He had to physically
re-learn how to do everything that was a normal part of life. The
things he loved to do, such as fly fishing and hiking, were no longer
feasible. Like it or not, he was limited. Speech was a struggle
mentally and I watched him become frustrated by not being able to get
the right words out. In his lifetime he also faced prostate cancer,
liver cancer, bone cancer and lung cancer. I watched him struggle,
but I also watched him still SMILE. Despite what my grandpa had been
dealt, he always insisted on getting out of bed every morning, and
facing the day with a good attitude.
That
remained that same to the day he passed on in 2008. I've thought
often of my grandpa's example in my life. I learned more about
perseverance from that man than anyone else I've ever known.
REFINED
IN THE FIRE
Right
now I am sorta freaking out because I have stupid Crohn's Disease. I don't have a clue what I am supposed to do or how I'm
supposed to go on living like everything is completely fine. Yet I know
God is making something beautiful out of this. I know He is refining
my heart in this fire. Even though sometimes the fire gets hot and burns me, I know He is allowing it for a greater good. Maybe
I will never understand on this side of eternity what those purposes
are, but I am trusting the Lord. I am sure there were times in my grandpa's life that he felt like his life wasn't impacting
anyone. Little did he know how much of an inspiration he would be to
his youngest granddaughter, years down the road. All those years I was
observing his attitude and example. Honestly he impacted me more than
he ever knew. The point I am trying to make is that we never really know what type of lasting effect we may leave.
ONLY
ONE LIFE TO LIVE
Although
my grandpa Ken's last days on earth were painful, I rest in the
knowledge that he is with Christ. The cancer took his life away from
this earth and onto the next, but I know I will see him again
someday. Even if you choose not to believe Jesus's promises, He
is alive and His love for you is real. The truth is that His gift of forgiveness has always been and always will be free. I beg
and plead with you all...please know this life and all that it encompasses are only temporary. “For it it appointed for man to
die once and after that to face judgment.”-Hebrews 9:27 Friends,
at the end of this life the Lord will judge us on ONE thing alone:
1.Did you accept Christ's offer of life and forgiveness? Or not?
That's it. Please don't push that decision off until later, because
if I've learned anything this past year, its that there are no
guarantees in this life, not even one.
HE'S MOVING
IN THE MESS
The
past year has been a mess. I've been opened up and stitched back together multiple times. I've had my guts pulled out, cut out,
rearranged, sewn and stapled back inside of me. I've had blood transfusions
from anemia and hospitalizations from illness. I've had
tubes, wires, medicine, blood and plasma all inserted into my veins.
I've puked until I had to have a tube shoved down
my throat, I've been disgusted, frustrated, broken and beat. After all that I was given the shattering news that I still have the same disease I'd just fought to hard to get rid of. Boooo! And
somehow there is a reason for this.... My God, the King of kings, is
alive and He is moving in the mess, I know it. Even with all the chaos, disorder
and confusion whirling around in my life right now, there is
something beautiful coming from it...
I guess what I'm trying to say is that although I would never wish my trials on anyone, these crappy circumstances are bring new songs to my lips. While recovering from my surgeries, I literally could not sing. (BTW what a punishment for a musician!) Singing involves- believe it or not- our abs. My singing voice was so small and faint, as my sore stomach muscles couldn't handle the act of expanding air! Now musical notes are coming forth from both lungs and my heart.
The Lord is giving me a new song to sing. One of suffering, perseverance, hope and faith. Speaking of
which....
One year ago I made the biggest
decision of my life. I decided to have my colon removed. Life had become a battle that I was fighting daily. In one corner was my body- which was crying out for death. It was wasting away and failing me horribly. In the other corner was my spirit– which was crying out for life, perseverance and hope. I knew there
were no guarantees with surgery, but I also knew I would have a shot at being well
in the long run. Disease free-this was the motivating factor. My GI doc had
been telling me for years, “You know, Kels, if you have no colon,
you won't have colitis...” Having been sick for the majority of 5
years at the time, I was finally ready for a life-changing
event-surgery.
“Oh my gosh. I think I just decided to have
an ORGAN REMOVED...Ahhhh!” [Journal entry from 1 year ago]
THREE
LOOOONG WEEKS
The Mayo Clinic has this sort of
protocol they have to follow with patients. Don't get me wrong, I
completely understand why they have the rules they do. It was
just frustrating to be wasting away and have no way to convince
anyone to put a rush on the process! I had to wait 3 weeks until they
could get me in to meet with their GI docs, do their pre-surgery
testing, and get lined up with my surgeon. To someone who should
probably just have checked into a hospital, 3 weeks was a lifetime away. I was not entirely sure I could even make it that long!
Pre-surgery I was rushing to the bathroom 40+ times a day and losing
immeasurable amounts of blood from a bad Ulcerative Colitis flare. I
had withered away to 110 ish pounds and I was in a lot of pain. I spent my
days laying on the living room floor, writing poetry and watching
sell-o-vision on the tube. Anything I ate only caused painful
cramping, but I still forced myself to eat rice and drink water. I
was weak, afflicted, starving, sleep-deprived and oh so needy. Here's a comical video of what my life was like back then...The songwriter, Jordan Sweeney, also has Ulcerative Colitis. He filmed the music video himself; its a pretty accurate depiction of life during a flare of UC. http://www.youtube.com/watch?v=9JeZ0A7Jigw I felt
entirely helpless. I was completely depending on my God to carry me
through the long, lowly days until I could fly to MN to get my
diseased body part removed! The Lord was my sustainer through that
time. He was faithful and True and He carried me.
11-26-11
Waiting, wasting, melting away
Holding on for twelve more days
I know its not a “fix it all”
but it can't
be worse than this
Weak, frail,
empty, cringing
Waking, wanting
to be done with it
Tired eyes,
tired body, legs so heavy
Tripping over my
own feet
So, so
pathetically weak
The days are
blurred,
the nights much
worse
How will I last?
I feel my time
has passed
The sand's run
out in this hour glass
burying me in
the sands of time...
LIGHT
IN MY EYES FADING FAST
While waiting for my surgery
date to approach I was trying to keep going to work. I have no idea
how I waited tables, being in such terrible shape. I guess when you
live with a chronic illness, you sort of learn to block out reality,
so you can enjoy some sort of normalcy in life. (Not the healthiest
thing I know, but I had to work to pay my bills!) In real life you don't get the luxury of passing 'GO' and collecting $200, just because you keep on going! Sometimes we are simply dealt sucky circumstances and gotta figure it out as we go. I learned to put up a front that everything
was okay, even though it was clearly NOT. I did this for a couple reasons:
1. If I walked around all day with the attitude of “woe
is me” how would that help anything?
2. Everybody did not need to
know my most personal struggles and battles. Some stuff is just
embarrassing to share! For example: “Hey Kelsie, how are you
today?” Should I have responded with , “Oh not too bad, I just
have bleeding ulcers in my intestines, which cause me constant pain
and come with the urge to rush to the bathroom. Oh, and I haven't
eaten or slept in weeks.” Yeah, that would have be a great answer,
huh!?
As much as I've been able to, I have attempted to carry on with
life in the most normal way possible, even if that meant wearing a
mask at times. Hopefully you get what I'm saying; its not that I was
fake. If someone was truly asking if I was okay, I would explain my
situation. You see, I have this habit of wearing my heart on my sleeve, but I try not to also wear my butt on my sleeve. Hahaha.
MELTING AWAY
Life
is one long, endless night,
without sleep,
without light
Hope only
flickers with spite,
as a candle
dimly lit,
half emulsed in
hot, angry wax
I try to relax,
but I can't
because this
body is under attack
Surrounded on every side,
I'm a besieged city,
about to die
But the Lord
reigns from His throne on high
and my defender
raises His sword
He is my army,
my Helper, my King
He holds His
shield strong around me,
and fights on my
behalf
THE DAY I LOST IT
There was one day I lost my cool at
work. I must say that being a waitress, I have learned how to put up
with a lot of fluff people from stupid people. Apparently though, me
processing the idea of surgery + grumpy, self absorbed customers =
bad mixture! Who knew? I broke down one day. I couldn't put up with
one more crabby-pants blaming me for their order being wrong, when I
literally had written it down. I couldn't handle one more person
complaining because they forgot how to read and ordered the wrong
burger. I mean, what a huge life catastrophe- cold-ish fries,
right?!? There I was – at the end of myself, and I lost it. I just
got annoyed, abandoned my crabby customers, went into the back,
started bawling and couldn't stop. Thanks Prednisone, for the
intensified mood swings! Haha ...Oh, that drug... Truly it was hard
to constantly give so much of myself, when I was feeling so empty and
drained.
YOUR COLORS STILL GLOW
The sun is setting
on this dark, dark
day
diminishing light
that used to show the
way
I hid from the future
until the inevitable found me,
cowering, hiding from my destiny
This inward struggle must be disguised
by a cheery attitude and a well played lie The sun is setting in this mixed up
ending
I never thought I'd see this day
Somehow I must cover up reality
I must fool you all,
pretending to be okay,
as I crumble to pieces every day.
Yet even in this sunset,
Your colors still glow,
bringing light to these eyes,
that hold fear of the unknown
One year ago I was somehow hanging in there and holding onto Christ. I was fearful of what lay ahead, but knew I could trust Him because even when the sun sets, the view is astounding. I knew that the One who paints the sky so beautifully, was going to make a masterpiece out of my mess of a life.
A thing or two I've reflected upon throughout this
past year...
*Ahem*
* SHATTERED PRIDE - It's hard to be prideful when you literally can't
sit up in bed on your own! Everything I've been through has broken
me of my strong and driven self-sufficiency.
* MOST TRIALS ARE TEMPORARY, no matter how much they stink in the moment.
(Non pun intended...okay maybe a little pun intended...) 2Corinthians 4:17 reminds us that "our light and momentary troubles are achieving for us an eternal glory that far outweights them all." I admit its not been easy to think of my trials "light and momentary", but yet here I am, looking back now.
* A TENDER HEART for those suffering physically. Now when I see an
elderly person struggling to walk, my heart goes out to them. I know
firsthand how much it sucks to have your body breaking down and be
powerless to do anything about it.
* THANKFULNESS, even while suffering through pain and frustration. It's a choice being
thankful and it's a choice being disgruntled and whining. I didn't
always choose thankfulness, but I know the attitude I choose is
entirely up to me.
* DON'T EVER ASSUME anything about anyone. There were times when I needed
somebody to open a door for me, because it was beyond my weight limit
or because I was extremely sore. To anyone around me though, I
appeared to be a healthy and capable young lass. Who woulda guessed I had just been stitched back together like Raggedy Ann? Next time you see some “kid”
pushing the handicap automatic door button, don't glare because
“they're letting all the cold air into the building”. Instead be
a friend and open a door, bro.
* "WEIRD" - A person has no idea what weird is until they've handled
their own intestines.
* WHEN SOMEONE IS HURTING, the best thing to do is just BE THERE. Don't make excuses, or have great intentions, just actually show up.
* GOD IS IN CONTROL. With choices come risks, but Christ is holding the stars in place and He is also holding my life in his hands. And oh, His love is deepand overwhelming.
* SOMETIMES A PERSON NEEDS TO BE CARRIED. When a person goes through something detrimental, they can lose
heart. A situation at hand can seem like it will never, ever, ever improve. Its easy to become beat down by the trials of life and lose
sight of hope. Its in desperate times like these that others must have hope FOR them. Being dealt bad news after bad news took a raging toll on me. Three
surgeries later I am so thankful for these encouraging people in my life. They
helped me believe that a better future was just around the corner,
when in my own heart of hearts I couldn't believe it anymore. I truly believe that the
most beautiful thing a person can do for another is have unwavering
hope for them. My prayer is that God will never let me forget how it
felt to be so beat down, so I can encourage those who lose
sight of hope.
Sometimes a person has been standing in the pouring rain for so long, they need to be reminded that the sun WILL shine again one day.
Burned
down, burnt out
Trying
to have faith in you,
but
my heart is filled with doubt
Torn
up inside, guts ripped out
hopeless
hope fluttering
destroying
all I am
Emotions
spinning around,
changing
who I am
This
vicious journey
has
beat me up and drug me down
How
long will this go on??
I
need sword to fight
armor
to protect this soul
Inspiration
to lead me forward
to
a better place and time
I
try to block out memories,
forget
this path I've walked,
but
these events are hanging onto me,
shaping
me, reminding me where I've been.
SHOUT
OUT TO OFLO!
Encouragement
from the family of God helped me keep pressing on. After my second
surgery I had a really special dream, which I will share with you
now...In the dream I came to my Christian friends wounded. They were
lifting me up and taking care of me. I don't remember how exactly
they were taking care of me; I just know they were. My friends were
very concerned for me in their hearts and they were praying for me. I
felt their prayers helping me and healing me... I specifically
remember seeing some familiar faces from Overflo (the 20-somethings
bible study I attend). What a beautiful picture of the family of God and how
mightily He uses prayer! Romans 12:12 “Be joyful in hope, patient in affliction, faithful in
prayer.” Thanks Overfloians, for being prayer warriors on my behalf! The Lord loves to hear us and He desires to hear us even more.
* MY HUSBAND LOVES ME - Jim has seen me at my lowest of lows and endured many sleepless nights by my side in the hospital.
Here he is building his "pillow bed" on the couch in my room. The nurses just kept bringing him pillows, without realizing that he already had a ton, so he built a pillow fort to sleep on! (Not that he got much sleep, but yeah..)
When I was a raging lunatic, he was gentle and compassionate towards me. He interpreted my slurred speech when nobody understood what I was saying. Jim calmed me down from panic attacks in the hospital. My wonderful friend held my hair back as I puked, and still kissed me after I threw up all over him. I am humbled by the fact that I get the privilege of being married to this man. He has shown me what it is to be loved like Christ loved the church. When he asked me to marry him, I'm sure he never imagined all that this past year has brought. Thank you, love, for holding my hand and holding me up.
4 weeks post Takedown surgery at our friends' wedding!
*To my mom- Lady, you're the BESTEST! I know you haven't been paid enough (or at all) to be my personal cook, chauffeur, mule and secretary, but I really DO appreciate you. It must have been frustrating to sit and watch as I went through some of this junk, but I couldn't have made it without you by my side. Thanks Madre, for hauling my luggage through the airports, for cooking meals in our hotel, for pushing me around in a wheelchair, for helping me try to change my stupid ileostomy bag for like 3 hours at a time. You've put up with a lot of crap from me throughout this entire process. Thank you for being so patient and loving towards me.
ATTENTION
EVERYONE! -To anyone who came to visit me in the hospital... (oh hey, look! Its Jill, my MN college roomate! (and our dinosaur amigo) She drove to Mayo Clinic to visit me. Yay!
-To anyone who called me or text me back after I sent a non-sensical message...
-To everybody who prayed for me...
-To
everyone who's ever sent me flowers or a card in the mail....
-To my friends who came to my house and watched hours of Netflix with me because I was going crazy lonely...
-To everyone who's ever helped me carry my burdens or lent a hand...
-To those who donated money to help pay for plane tickets to the Mayo Clinic...
THANK YOU for
being there for me.
THANK YOU for your love and support.
Your kindnesses will not be forgotten by me, ever.
As I look back and reflect, I am grateful for all the people in my life, however invested you all are. I feel very blessed to know each one of you. Love, Gutless
My "healing garden" AKA all the flowers everybody sent me after surgery #2!
The
purpose of surgery #3 was to get rid of the external ileostomy bag
and get hooked up to my own plumbing! Finally they would take down the ileostomy bag! I never thought I’d be so
excited to poop!
Here's me one day before surgery with
a random dinosaur statue outside my hotel in Rochester, MN. I was
taking full advantage of my healed up abs, because the next day, I
would be back to sore abs for anther 6-8 weeks!
POUCHOSCOPY
Before
they would proceed with the ileostomy reversal, I had to have
something called a “pouchoscopy” done. The procedure is similar
to a colonoscopy, in the fact that they shove a tube and camera up
the butt and take a look around. I must say that its a good thing I have a cute butt, because I've had to show it to waaay too many people. Anywho, surgeons wanted to be sure that my
J-pouch would be able to hold waste and not leak. So what did they do
to check for leaks? Why, fill my J-pouch uncomfortably full with
liquid of course! It was quite a nerve-wracking procedure, not only
because I was conscious during it, (ow) but also because I
knew that at any moment I might hear the heart-breaking news that it
hadn't healed properly. Up until that moment, there was always a
chance that I might end up stuck with a permanent ileostomy. All
those months I had waited to be reconnected, might have gone to
waste. However, the scope showed that my J-pouch had healed nicely,
without any leaks and that my small bowel was in “pristine”
condition! My butt was ready to be used as a poop chute once again!
Hooray!
May 3, 2012
Here's me the morning of the surgery, posing for a photo
op with the Mayo statue guys. (They liked the attention!)
ITS
GONE??
After
my Takedown surgery, I was still in the habit of checking to see how
full my ileostomy bag was, which was quite humorous because every
time I’d go to feel for it, it was GONE!! Gone? Yes- gone! What a
glorious realization!!! My wonderful flat stomach was now free to be
flat and free again! I could wear my regular clothes because I didn't
have an appliance to cover up anymore. I could wear
jeans again without having to worry about my bag becoming untucked in
public. Truthfully,
living with the ileostomy wasn't the end of the world, but I am happy
to be bag free now!
EASY
AS PIE?
Due
to the fact that this surgery was less invasive, rumor had it that
this would be the easiest of the 3. All they would need to do was
sew the two split ends of my small bowel together, shove my insides back inside, and stitch the hole up! No reconstructing or stapling
this time! Sounded simple enough to me! Easy as pie, right?... Aww
shucks, not in my case...
THE
BLOCKAGE
I
ended up getting an intestinal blockage, which made me more miserable
that I'd EVER been. More miserable than the time I almost died from
bleeding to death, more miserable than knife butt, more miserable
than sleepless weeks, more miserable than Colitis pains. The
cramps of an intestinal blockage were worse than anything I'd ever imagined. I've never given birth to a child, but I feel its a
safe comparison on a pain scale!! The cramps were gut-wrenching. They
felt like giant air bubbles stuck inside me, that ought to make me
explode! Like LAVA rolling around, totally trapped. Extreme and
humbling, the cramps came and left, leaving me breathless. It took
over several days to resolve AKA fart the cramps all out.
WHY
IT HAPPENED
Right
after surgery the doctors wanted me to start eat food right away to
get my guts waking up from the anesthesia.They
stressed for me to remember that using my new insides would be
similar to living with the ileostomy, but to keep in mind that it
would be on the inside now. My guts would function the same as
before, just invisible to my eyes. So I proceeded to eat like I had
when I had the ileostomy. Lots of “thickening” foods with little
liquid. Somehow my food got backed up inside of me. (Probably
partially because of the fact that my guts had just been sewn back
together and were likely SWOLLEN in certain areas, making it hard for
food to pass through.) My swollen intestines got stuffed full of food and the
only way for it to come out was by puking, and I puked...for 8 hours
straight!
*Ahem*
To anyone looking forward to having their Takedown Surgery: Keep in
mind... When you are allowed to eat after surgery, use caution. If you are not careful to chase food with PLENTY of liquid,
you'll likely get a blockage and might require the placement of an NG
tube to stop your constant vomiting. Granted everyone’s experience
is different, but I figure I'd throw my advice out there. My blockage
took 4 miserable days to start to pass through and was an experience
I cannot forget (in a really terrible sort of way)
PASSING A BLOCKAGE
How
do you help a blockage pass?
1. Drink
lots of liquids to help push the trapped foods through. (Hot tea
especially is a friend)
2.
Walk to encourage movement. 3. Wait it out.
4.
If severe, NG tube goes in... Sometimes a blockage gets really bad
and even the liquids you drink get backed up. I mean, there's only so
much room in a person's stomach, right? Eventually you vomit up food,
along with the liquids you've been drinking to try and help it pass....
Plus stomach acid; that stomach acid is super tasty to vomit up! =P
(I swore it would take weeks to brush my tongue clean!) So
anyways, the vomiting won't stop until the blockage is able to move
through the other end. I kept vomiting every half hour and ended up
having to get an NG (nasal-gastro) tube placed in my throat. Having a
tube shoved down one's throat while awake is very traumatic, period.
NG
TUBE
Here's
how the experience went...They shoved a plastic tube up my nose, down
my throat and into my stomach. This tube then sucked up the stomach
acid up and stopped the puking (at least in theory). I gagged so bad
when they put the tube in! I threw up like 5 gallons (not kidding)
all over myself, my fiancee and the nurse. At least when it was over,
it was in. Oh how I wish that was the worst part of it, but it quite
possibly was not... I had the NG tube in for 3 days and was
miserable. Every time I looked in the mirror at myself I almost puked
- grossed me out! They didn't allow me to eat (obviously), so I was
hungry. Only water or liquids were allowed IF I could tolerate any without puking. That stupid tube made my throat sooo sore. It was
constantly rubbing on the side of my throat. When I would swallow my
spit, I could feel it there. It hurt to talk, so I would either
whisper what I needed or I would use hand motions. I established a
pretty ridiculous, made-up sign language with Jim and my mom during
this time. My ear also became sore from the tube's presence. The only
thing the nurses could offer me was some numbing throat spray. It
temporarily eased the ache, but I was only allowed to use it about
every couple of hours. The throat spray tasted like cherry, and now I
forever associate cherry flavor with having a tube in my throat. I'd
never wanted anything out of my body so badly before! When they
finally did take it out, it was equally traumatic as when they put it
in. Apparently I've tried to block this experience out of my memory
as best I could, but I oh I cried and cried during this trauma.
5-5-2012
This was my original wedding date, chosen before I got sick from
UC again and before I ever decided to have surgery. How ironic that
what was supposed to have been the happiest day of my life turned out
to be the most miserable! Instead of wearing a white gown and
carrying flowers down an aisle, I was wearing a blue gown covered in vomit and having a tube shoved down my throat in a hospital. Instead of
celebrating with friends, family and my husband, I was hungry, sore, drugged and frustrated. I was feeling so low, and struggled to
believe things would get better. Fact: sometimes it is hard to have
faith. MEET AVALANCHE!
(My
giant penguin!) Jim had originally planned on giving Avalanche to me
on May 5, so I wouldn't be so bummed that we weren't getting hitched
that day. However Jim soon realized that he was way too massive to
take as carry-on on an airplane! So I got to meet my penguin love
ahead of time, so he could be waiting for my return home... Is he not
the cutest penguin EVER???? I think so. For the record, Avalanche is even cuter in person! POOPING!
YAY!
The
Mayo Clinic told me to expect to be using the toilet 10-20 times a
day right after my Takedown surgery. After 4 days of blockage, my
bowels finally kicked in, and stuff started moving through. Thank God that I
started pooping! (well sort of...) I pooped blood, 1700 ml of it in
12 hours (that's A LOT!) It was very frightening to poop blood for an
entire day. The nurses thought something might be wrong and I got
RE-marked for surgery, in case they'd have to operate. I'd just gotten rid of my ileostomy bag, and now I was being marked to
potentially get it back?? It was a pretty depressing night to get
through. In the morning my surgeon visited me and reassued me that it was just old blood from surgery. Apparently it can be normal to pass that crazy amount of blood. Odd.
BUTT
BURN?
Looking
back at the blockage, I think I was trying to spare myself from the
impending doom and gloom of something called “butt burn”. You
see, when you don't have large intestines to go through, all your
food is a lot more acidic and harsh. No colon + no rectum + stool = butt
burn. Remember “ eroded skin” issues from the ileostomy on my tummy? Its equivalent is now a chemical burn on the anus. My butt became
raw and sore from liquid stool passing through there. The itching and
burning was infuriating! My 3 hour flight home after I got out of the hospital was awful. I literally cried during the entire flight. I felt sorry for
the people sitting near me on the airplane. It must have looked like
I was having an emotional breakdown about about flying or something.
I just covered my head with my coat and wept, waited and sobbed.
I
wanted to CRAWL OUT OF MY SKIN, for the next 3 months. I tried
different creams, bathing techniques, etc, but nothing would soothe
the burn! I couldn't sleep at night and the only sleep I did get was
from all the Benadryl I was taking to knock me out. Even so, the itch
would wake me up at night and drive me INSANE. Every time I would use
the toilet it burned like hell. Chemical burn on anus = not fun.
Showers and ointments were my new best buddies. Butt burn was and
sometimes still is maddening! It sucks too because you can tell your
physician all about how terrible it is, but unless your doctor has
also had their rectum removed, they just can't understand the agony.
MAGIC
CREAM?
For
anyone else out there searching for a “magic cream” to rid
yourself of butt burn- It doesn't exist. I probably wasted at least
50 bucks testing stuff out. The issue is that once there is such a
bad chemical burn, no soothing creams are going to help. Be patient
though; I know it seems like the torment will never end...but it DOES
get better- I promise. Okay, as far as that magic cream, I sort of
did find one: Cortizone 10 cooling relief gel. I found it at Target
or Walmart. The directions specifically say not to use inside the
anus. I disobeyed, and got some relief. I am gunna warn you though,
it burns super bad for like 15 seconds, and you will be screaming... but then the cooling relief
sets in and the agony takes a break. I asked my doctor about using it.
She explained that the chemicals in that stuff can actually break
down your skin tissue and make it super thin, so she cautioned me to
only use it when necessary. I was dependent on the “burny cream”
as I called it, for 3 months straight. I was then able to ween myself
to using it less and less and finally, I rarely need it anymore. **Update** 2 years post Takedown I have a solution! My best advice in dealing with butt burn is combination of several things...
VASALINE - Apply to anus skin before stooling, not afterwards. It sort of puts a protective film over the skin. Think about it...why would it do any good to apply it after the acid poo flies on by??
WIPES - Make sure whatever brand you buy is alcohol free. I prefer the flushable type because well duh, gross.
CALMOSEPTINE - This stuff can be found at local drugstores, such as Walgreens, CVS and sometimes even Walmart. Its OTC, but for some reason its often stored behind the pharmacy counter. Which means you get to ask the pharmacy tech for it and its such a weird name that you have to literally spell it out on a piece of paper for them. I buy like 6 tubes at a time and stock up. That beats having to repeatedly explain that its for rectal surgery patients. Haha. Anyway....BEST. STUFF. EVER.
This paste has menthol it in, so it soothes. It stains underpants white though, so wear a liner if you can. I felt so jipped when I first learned about this stuff. Do you know how many colonoscopies I endured without knowing about this amazing stuff??!!!? I always have a small tube in my purse for rough days.
OVERALL
Surgery
#3 was not as easy as I'd expected it to be. Apparently waking up
bag-free is not equivalent to problem-free. The typical hospital stay
after Takedown is 2-3 days. I was in there for 7 days, since the blockage
put me back a few. Healing up from this surgery was very different
than my other 2 surgeries. Although I wasn't as cut up or sore, the
healing process came with a completely different set of problems
afterward. In a sense it felt a little like I went backwards to when I
had Colitis, because I was going to the bathroom so much at first. It took
2 months of stretching my J-pouch to its full capacity. Another
downside (from the blockage) was that I lost all that healthy weight
I'd worked so hard to gain. Thanks, not eating/constant puking! Oh
well, I figure I have the rest of my life to attempt to get fat.
Maybe someday I will actually reach and be able to maintain the 120
lbs that it says I weigh on my driver's license... Here's a picture of Jim and I napping on my hospital bed, waiting for me to be discharged from the hospital. (The discharge process can take literally hours...to get prescriptions arranged and legal paperwork signed, etc...)
I remember feeling so exhausted, yet victorious. I got my butt back and that was something to celebrate! Also
that Kleenex on my right side was directly where my ileostomy bag used to
be. Way to ruin the picture, Kleenex! Haha.
THE
ADVENTURE
There
is a song by Angels & Airwaves, which I connected deeply with
after my final surgery. I didn't know what was just around the bend,
but I knew that life felt like it was finally beginning. All those
months of recovery, of waiting, of being “on hold” were over.
I
particularly love the lyrics that say, “I
wanna have the same last dream again, the one where I wake up and I'm
alive. Just as the four walls close me within, my eyes are opened up
with pure sunlight. I'm the first to know, my dearest friends, even
if your hope has burned with time, anything that's dead shall be
re-grown, and your vicious pain, your warning sign, You will be
fine.”
“LIFE'S
WAITING TO BEGIN..."
I
don't know what the future has in store, and at times, I'm honestly
kind of afraid to find out. I sure didn't think I'd end up
re-diagnosed with stupid Crohn's Disease after all of my surgery drama! The
mystery of life doesn't take the adventure out of it though. Likewise, the surprises in
life don't detract from the sovereignty of the Lord. Just because
things aren't panning out how I'd hoped, doesn't mean its not how its
meant to be. Jesus sure knew what He was talking about when He said,
“Therefore
do not worry about tomorrow, for tomorrow will worry about itself.
Each day has enough trouble of its own.” -Matthew 6:34 One day at a time folks, that's how we gotta live. One step at a time, by faith.
