This Sparrow Will Sing Again

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....

THIS SPARROW WILL SING AGAIN

The notes she lost 
in the winds that blew

First flat, then sharp, 
so out of tune

These trials have been unfair,

yet she has stayed up in the air

This sparrow will sing again...

At times she lost her way,

yet she has flown on through the gray

This sparrow will sing again

Shes flown through fire,

Her wings became tired

Endlessly trying not to crash

She clung to the sky,

Fighting for her life

Flapping hard against the storm

These trials have been unfair,

yet she has stayed up in the air

This sparrow will sing again

The the clouds will part someday

and she will forget all her pain

This sparrow will sing again...

Keep on singing, even through the storms of life. 

One Year Ago - Fading Fast

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.

Reflections

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 deep and 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!

Surgery #3 - ileostomy Reversal

TAKEDOWN SURGERY AKA RECONNECTION!

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...

1. 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??
2. WIPES - Make sure whatever brand you buy is alcohol free. I prefer the flushable type because well duh, gross.
3. 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. 

http://www.youtube.com/watch?v=JMl8cQjBfqk

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. 

ILEOSTOMY

Since I lived with an ileostomy, its only fair to devote a blog to it. I realize that at first thought it seems gross to have your poo coming out into a bag on your stomach. However, I must point out that there are a lot of people who live with an ostomy- and it is NOT the end of the world! Life goes on, even when something drastic happens to a person's anatomy. Given the choice, anyone would most likely choose to be “normal”, but sometimes we must accept reality and move on with life...

Living with an ileostomy was quite an adjustment for me. Its not something I liked to talk about because it was pretty personal stuff! Barely anyone knew that I had one and I wanted it that way. I didn't want anyone to view me any differently than before and I sure didn't want any more awkwardness than what I was already dealing with! There was only one time that a friend came barreling over to give me a hug and I quickly had to turn to the side to avert a full frontal SLAM...How do I put this?... “Stop, I am DELICATE!”

EMBARRASSING NOISES

Certain foods cause gas, but the air no longer exits out the 'ol rear end. With an ostomy, gas can't be held back, since it exits into the bag. According to my ostomy, Bible study prayer time was one of THE best times for growling digestive noises, and of course- passing gas. Pure awesomeness. Hahaha.

EMPTYING THE BAG – A task that is done about 7-10 times a day. Quite the hassle, I must say. This is an acquired skill that unfortunately requires experience to perfect...if you catch my drift... If you let the bag get too full, it can be a disaster to empty into the toilet. Even if you don't lay enough toilet paper on top of the toilet water before you empty, you will get splashed - by your own yeahhh.... Grossed out? Get over it- I had to LIVE IT.

FOOD AND ILEOSTOMY

Everything I consumed eventually ended up in the bag. Therefore, I had to be very watchful of what I ate. Certain foods cause the stool to thicken up and other foods cause the opposite problem. Based on dietary choices, the bag can get quite heavy, which can be uncomfortable, since it is hanging off the stomach. It was a constant effort to try and keep things the right consistency, so that I would be able to actually absorb the nutrients from my food. I had to be careful though because if things got too thick, I could get a intestinal blockage.

DOWNSIDES

*The smell- The Hollister Brand appliances that I used are the best available. They are “odor proof/smell resistant”, but I always felt like I carried a faint smell around with me. I was probably just imagining it, but then again who knows?

*Obsession with checking the bag. I would constantly be patting my stomach to feel how full the bag was getting. If I was around friends, I would try to be inconspicuous by keeping it empty.

UPSIDES

Don't get me wrong, having an ostomy isn't all terrible. Everything was just so unfamiliar to me at first. All these weird issues that nobody ever warned me about kept a constant shock to my brain. One upside is that there was
*NO urgency to rush to the bathroom anyomore! Sure beats living with Ulcerative Colitis, where I was rushing to the bathroom 10-20 times a day! I mean yeah, if the bag gets too full, it and can be problematic. Overall though, if I needed to empty it, I could usually wait quite a while. There were times that Jim said something like “Lucky, you can poop whenever you want. I don't have that luxury!” That's right, normal peeps, be jealous of all the ostomates out there!
*Built in hand warmer! Our intestines have a very warm body temperature. In the winter if my hand was cold, I could simply place my hand in my pocket and tada- Toasty! and so discreet!

ALL I WANT IS WATER!!!!

Life without a colon to help absorb liquids is tricky! One of the biggest frustrations that I had living with my ileostomy was staying hydrated.. It was a continuous battle...

RULES FOR LIQUID INTAKE

Rule #1 SIP - don't chug. I carried a water bottle with me all day long and would continuously sip throughout the day. Rule #2 Never drink anything on an empty stomach...or it will come rushing through the small intestines and into the bag not long after. The reason for this is because our intestines actually use water to break down the things moving through. Since it literally took more water to process water, I would become DE-hydrated from drinking water. Confused? Yea, it sucked! Some times I would become sooo thirsty and over-do the liquid intake and really pay for it later. The bag would fill up with more liquid than I even drank! How's that for fair?!? When this happened, no amount of potatoes, rice, or any other “stool-thickening foods” could fix it. I specifically remember one night I had this problem...I had to get up every 15 minutes for about 6 hours straight to empty the bag. Eh- who needs sleep anyway, right? Especially not a recovering surgery patient, huh? Helpful tip - If you find yourself dehydrated and frustrated, drink Pedialyte instead of water. I know its intended for toddlers with diarrhea, but all the extra sodium will benefit you in the process.

Rule #3 Always eat food with anything you drink! The food helps absorb liquids. (See explanation above)

TYPES OF ILEOSTOMIES 

There are 2 different types of ileostomies that surgeons constructed from my small bowel. I had an “end ileostomy” after my -->first surgery<-- . With the "end ileostomy" one end of the intestine is pulled out through the abdominal wall and sutured in place, forming what is called a “stoma”. The other end, the end that would travel downstream to your large intestine and eventually out of your anus, is closed off and left inside the abdomen. Food traveled through the entirety of the small intestines and eventually exited into the bag.

After my -->second surgery<-- I had a “loop ileostomy”. Essentially the intestine is pulled through the abdominal wall and slit open. Food travels through the upper half of the small intestines and then into the bag. The lower half of the small intestines were not in use, so that it could heal up from the reconstruction surgeons performed on it! Surgeons left both “ends” of the intestine where they could be easily accessed for reattachment later. The reason behind doing that was to make my next/last “reversal” surgery easy. Both ends would simply be sewn back together, dropped back into the abdomen and the hole where the ileostomy was would be closed up.

"LOOPY"

I named my second loop ileostomy “Loopy”. Why did I give my second ostomy a name, but not the first? Probably because he had so much personality! Loopy was a temperamental jerk; he had lots of problems with rejecting stitches and eroding skin. When I had my first ileostomy, I was able to use flat appliances, which was great. With Loopy though, I had to use a curved appliances, which was less favorable because it tended to stick out a bit more. This made me even more self conscious about what clothes I wore.

ERODING SKIN?

Let me explain eroding skin... With no colon to go through, waste is a lot more acidic and harsh. If the circle of skin where I put my appliance onto was just a tiny bit too big, the surrounding skin would erode. It would literally be eaten up by the harsh waste that would sit on it day and night. Like lemon juice on an open wound...this was just ONE annoyance I dealt with. There are tricks to healing up eroded skin, and I sure wish someone would have mentioned them to me sooner! One of the best things out there for eroding skin (I'm sorry-I can't remember the name of it), is a very, very, literally paper-thin putty (not the regular putty). It is very absorptive and acts as a barrier between the skin and the stool. You can put it right over the eroding skin when you change the appliance, and it should give it a chance to heal up. I got a big square sample of the magical thin putty stuff from a local ostomy nurse. Also eating lots of protein helps things heal quicker! (Chicken, eggs, tofu, peanut butter, etc..)

CHANGING THE APPLICANCE –

Done twice a week, this process took me about an hour at first. Biggest hassle ever. The problem with an ostomy, is that it does what it wants, when it wants. There is no “Pause” button for foods moving through. I found that it was best to change my appliance in the morning, when my stomach was emptiest. Even just drinking a sip of water, it filters first through the intestines and then onto other organs. I spent HOURS in the shower, crying and pleading with my ileostomy, “Please be nice, please, please??” I would yell and scream at the red knob on my tummy. There were good days and bad days, but I had the bag change down to a SCIENCE near the end!....

THE ART OF BAG CHANGE

(A few tricks I feel obligated to share)

Here's what my morning looked like on days I was due for a change:

1. Take 2 Imodium (to slow things up) 30 minutes prior to breakfast.

2. Eat a small portion of hash browns for breakfast (to thicken things up). NO water or liquids, except that used to take the Imodium with.

3. Wait 30 minutes and then hop in the shower. If you follow my directions, there is an optimal time frame in which you can clean your skin and have nothing coming out of the guts, but it doesn't last long.
4. Have as much prep work done before you get into the shower as possible! I actually had a side table set up to the side of the shower, with all my stuff on it, ready to grab when I needed it. (Adhesive remover wipes, putty, clean bag, sticky wafer circle, stoma powder, scissors, etc...) Have the circle cut out to the right size ahead of time, and have the putty rolled out and stuck onto the circle.

5. Remove the old appliance taped to your tummy! Like ripping a big band-aid off a wound– I found that adhesive remover wipes helped a ton. Actually I can't imagine not having them!

6. Clean the skin and stoma (ostomy) with mild soap. I used Dove unscented liquid. Side note- Hot water for some reason stimulates the guts, so don't be surprised when your “empty” guts start waking up. Side note - Some times I would be showering and forget that I had my insides on the outside. There I would be, enjoying a nice, relaxing shower and would accidentally run my hands down my stomach and then remember, “Ow, my intestines are stitched outside!” Always a horrifying moment, getting freaked out by reality! Haha!
7. Turn the water off and pat the area dry. If you don't get the appliance onto clean, DRY skin, your bag WILL leak- and nobody wants stool leaking onto their clothes. Thank God this only happened to me a couple times. The seal has to be PERFECT or you will re-live the same time-consuming frustration all over.
8. Patience- Don't get too frustrated. Sometimes my ostomy decided to start making a 'mess' right when I was 2 seconds away from being finished. GRRRR. Sometimes I just had to grab another fresh set of stuff and start all over.
9. Have a nice day and remember to drink some liquids to make up for not drinking earlier!

THINGS I MISS: (A list I made after surgery #1 when I was annoyed with having the bag)

*Independence- Not allowed to drive my car until 6-8 weeks after surgery.

*Having an income- I was a waitress, and since lifting was a restriction, I was moneyless. 

*Clothes- Imagine that there is a lopsided bag attached to your tummy and everything you wear only seems to make it MORE obvious. I literally lived in sweat pants, hoodies and baggy t-shirts, and my puffy vest. Comfy?- Yes. It was a bit of a struggle to feel womanly though, as I was 'scrubbed out' all the time. I really wanted to buy “Pajama Jeans- (the ultimate lazy person's pants), but my fiancee claimed he would disown me of I bought them. Haha! For the record, I still want pajama jeans!

*Sleeping on my stomach- Not an option when you have a bag perpetually filling up with “stuff” on your tummy.

*Sleeping through the night – The ostomy bag fills up overnight with gas. I would have to sleep-walk to the bathroom every night to empty my 'balloon' full of air and stuff. I'd heard nightmares of people's bag 'taking lift' while they were sleeping. I thankfully never awoke to this horrible scenario.

*Responsibility and busyness- My -->Recovery<-- time between each surgery was 12 weeks, times 3 surgeries = 36 weeks total. That's 9 months of being bored and broke!

*Snowboarding- One of my greatest joys. Only in my dreams this season!

* Cleaning- (Yes, I'm one of those weirdo people who enjoy domestic tasks)

SIDE STORY: Three weeks after surgery I decided that I should be ambitious and clean my kitchen cupboards, as we had found evidence of mice. [BAD IDEA]: DO NOT REPEAT my mistake! I ended up PULLING A STITCH... Never had I been in so much pain! It felt like a knife was tearing me from the inside out when I would move. Do you think I took it easy after my next 2 surgeries?? Yup, strict laziness was the new standard!! 

* Drumming- the 'ol Pearl drum set collected dust. So many times I want to bang out my frustrations on my drum set. Not recommended for the healing abs though! 

*Guitar – Poor Taylor slept in his case for over half a year. Too much awkward bending and twisting involved, not to mention the ostomy bag on the side of my body that the guitar body would lean against.

SCARS

My scars look pretty good today! I am pleased with how beautifully they healed up. The lower scar above my pelvic bone is where they took my colon out and did all their laproscopic internal reconstructing. The scar above my belly button is from a drainage tube left in after surgery, along with the other random scars all over my tummy. The scar to the right of my belly button was obviously where my ileostomy used to be.

I know this was a long blog, but I hope it can be helpful to somebody out there and if nothing else, I hope it has opened your eyes a little wider. 

Update: Scars 3 Years Post Takedown