Recovery

“Fast forward--> fast forward--> why isn't this stupid button working?!?” -Me during to my times of recovery

Recovery was a long process. After ¾ of a year, I started to miss everything…work, people, normalcy, just everything. I became so ready to move on with my life and I felt like I was in a holding tank.

*Disclaimer: I was not myself during the months of recovery* I was tired, crabby, achy and weak. My upbeat attitude slipped into a slight depression. My personality became withdrawn and at a loss for words. I sat waiting for the strange span of time to pass. I made a deal with my future self that after everything was over, I was no longer allowed to whine about being bored! It was a much longer amount of time than I'd ever wanted to sit and twiddle my thumbs! Most people would jump at the idea of sitting around all day, every day, with no responsibility and job to report to. My personality is not so. I like to keep busy. Having no income and nothing to do for so many months bummed me out. Overall recovery was a lonely and boring time.

However, I was very thankful be able to temporarily move back in with my parents. They helped take care of me by driving me to appointments, cooking me meals, helping me out of bed, bringing me ice packs, etc. After I was allowed to drive, (6 weeks after surgery) I was able to move back in with my roommates again. Even so, everyone had their own jobs to go to, except me.

(Sad Face)

On the bright side though - I had plenty of time to plan my wedding!! =D

RESTRICTIONS

-I had a weight limit of 10 pounds, reason being that I just had abdominal surgery. I kid you not, I was not allowed to push a shopping cart. Again, we use our abs for everything. A gallon of milk was about the heaviest thing I could lift, without hurting myself.

-With an occupation of waitress and a weight limit of 10 pounds, going back to work was out of the question for me. Not to mention the fact that it would be incredibly awkward to be waiting tables with a poo sack hanging off my stomach! (I had so many nightmares of my bag becoming untucked while serving). Plus with only 10-12 weeks in between each surgery, there was barely enough time to heal up!

TIME WILL PASS YOU BY

So what DID I do during those long, boring months of recovery? Truly, I don't know. I know I did a lot of sleeping, a bit of feeling sorry for myself, and watched a lot of Netflix. I really wanted to use the time to learn the French language, but the Rosetta Stone Program costs like a zillion dollars. If only I had known about “Duolingo” then! (A free online learning/translation program) Check it out! http://duolingo.com/

A TYPICAL DAY (during the first 4-6 weeks after surgery):

1. Walk- Walking wakes up the guts, gets them moving and gets you healing faster. I would walk every day to build up getting my strength back. At first I just walked two houses down and back. Then 1/2 a block away and back. Pretty soon I was able to walk to the END of the block and back. Before I knew it, I could walk as far as I wanted, without becoming too tired! I was very thankful that the Montana winter was dry. Since there was barely any snow or ice on the ground, I felt safe enough to walk around the neighborhood several times a day. I also learned not to over-do it the exercise though – such a fine line...

2. NAP- The walks wore me out, so I took a nap every day in the afternoon...and I don't mean a light 'siesta'...I would sleep for hours at a time! There is nothing you can compare to how completely ZAPPED you feel after surgery! This low level of energy lasts for weeks. In my case, it was very frustrating because I had a total of 3 surgeries. Every time I would feel great again and get my energy back, it would be time for another operation, which would leave me back at square one! 

3. Eat- I was on strict orders to gain some healthy weight! It was tricky business because I had to eat lots of tiny meals throughout the day. Gorging was discouraged because they didn't want me to get a blockage in my intestines. Smaller meals digest easier and since my guts had just been messed with in surgery, I wanted to be as kind to them as possible. Side note- its pretty difficult to gain weight when you have an ostomy. This is because your food doesn't sit there long enough to absorb as much as it would in a colon. I jokingly, but literally was on a "butter and mayo diet" and successfully gained 5 pounds! GOLD STAR! 

“WHERE'S MY DONUT?”

No, not the delicious, sugary breakfast type...

After my second surgery my anus hurt so bad for such a long time because they had cut my rectum out and stapled my j-pouch to it. Yeah, I actually had throbbing staples in my butt. It hurt to sit for months. I had to buy a special cushy donut pad to bring everywhere to sit on. The special foam donut pad had a hole cut out in the middle, making it a bit more comfy for the 'ol titanium anus.

Here is a poem I wrote during my months of recovery...

REGENERATE

Weary of waiting

Weary of wandering

This desert is wide, far, exhausting

Resting in restructure

This patient’s patience wearing thin

Worn out, wound up

Waiting for life to begin

Oh the times I've circled this parched land

Oh the times I've reached out for Your hand

I've felt nothing but defeat

In this dry, scorching heat

Re-assembled, re-designed

Sitting in a strange span of time

Healing, hoping

With something beautiful in mind

This solitude is taking it’s toll

Isolation weighing heavily on my soul

Wasted, unfulfilled time

Such a destructive, petty crime

Scars and stitches

Bruising, gasping

Re-acclimating within

These things take time

Breathe out, breathe in

Resolve is coming

I can feel it in the stir

Although its through a way

I’d never have preferred
Holding on, holding out

Never letting go of You, even in my doubt

Never giving up, hanging onto You

Even in this mess, I traipse on through

Healing takes time, patience, perseverance and faith that things will get better. Problem after problem, the Lord took care of each and every one that came my way. My issues resolved, not in my timing and sometimes not through the way I'd hoped for, but in HIS. Hanging in there during recovery is only half the fight; the other half is hanging onto God. I know it sounds cliche, but He is so good, so faithful, so kind, so compassionate. Fact. =]

Surgery #2 - ileoanal anastomosis and proctectomy

I almost had to postpone my second surgery because of a lingering sinus cold that would not seem to end. I was about a week away from surgery and becoming nervous that it might be a sinus infection. If it had been an infection, the rest of my surgeries would have to be pushed even further out. This would have affected many things in my life. I would have had to change my wedding date - AGAIN, I would have to wait even longer to go back to work, etc… Thankfully the cold was wrapping itself up just in time! The fact that I almost had to postpone surgery actually gave me a fresh perspective. Instead of dreading it the entire time, I was grateful for it to arrive! My heart felt sick when I thought I’d have to postpone, and so relieved when I could proceed!

“Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.” -Proverbs 13:12

Side note- catching a cold when your abs have just been stitched up is ROUGH. I avoided friends and family with colds like the plague and for good reason! Imagine all the sneezing and coughing that accompany a cold...now imagine that while your abs are healing up from surgery. Super fun? - Yeah, NO. Thankfully I caught that cold near the end of my healing for my abs, so it wasn't as bad as it could have been! I was always SO paranoid though that I would catch a cold right after surgery and bust all my stitches out! Even still, coughing and sneezing gave my sore abs a very special kind of work out!

FEBRUARY 17, 2012

Ileo-anal anastomosis and proctectomy – fancy wording for J-pouch construction and rectum removal. My rectum was diseased from Colitis, so it had to go too. (For those who don't know - the rectum is the very end of the colon; it is not the anus though.) The surgeons constructed a "J-pouch" or as I call it, a "make-shift colon" from my small intestines, which would hold my waste and eliminate the need for the external ileostomy bag. However, before I would be hooked up to my newly designed plumbing, I had to wait for it to heal up. This meant 12 more weeks of living with the ileostomy bag. At least at this point I had experience to draw from!

A BRUSH WITH DEATH

I was told to expect that surgery #2 would be the worst of them all. Therefore going into it, I knew it wouldn't be a cake walk, but I didn't expect such a close brush with death either! The surgery itself went well, but once they took me back to my hospital room, I became extremely nauseous and started vomiting. Things only got worse from there...

I remember feeling wet all over my stomach and back and asking confusedly, “Why am I all wet?? The nurses pulled the sheets back and OH SURPRISE, I was covered in my own bright, red blood! Yes, it was I (the drugged patient with little awareness) that made the discovery that I was bleeding through a drainage tube in my stomach. They cleaned me up, and kept a watchful eye on me. My drainage tube kept filling up over and over. I lost a scary amount of blood, my blood pressure dropped super low and everyone became increasingly concerned for me. I was becoming extremely pale and disoriented. On top of that my reality was also becoming mixed with hallucinations. At one point I was staring and giggling at a BLANK TV screen saying, “Oooooh, the clouds are SOOO pretty!”

EYES AS HEAVY AS BOWLING BALLS

I never knew my eyes could be so heavy! Each eye lid felt as if it weighed 50 pounds! I literally had to pry my eye lids open to see anything in the room. I could barely see straight. One time I caught a blurred glimpse of 8-10 worried doctors and nurses gathered in my room. Their words didn't make much sense to me; it was all a jumbled mess to my confused brain. I also remember seeing Jim eating pizza. Mmm, pizza. =]

TRANSFUSIONS AND TUBES

The doctors ordered plasma and blood transfusions for me; 5 bags total. So instead of sleeping after surgery, I received transfusions throughout the middle of the night! Not that I could have slept anyway though…because after you get your rectum removed, you have a drainage tube IN YOUR BUTT. I knew about this drainage tube beforehand, but it literally felt like a knife up in there!! It must have been the way it was positioned, or the fact that I was sitting and laying on it, but I was in constant agony from it! That one night felt like DAYS to me. Time could not have gone by any slower.  By morning I was asking Jesus just to take me home. I was fed up and exhausted from being in constant pain.

There's a song by Jack's Mannequin, “Swim”, which held special meaning to me in this time. I couldn't have summed up any better how I was feeling. Take a listen...

https://www.youtube.com/watch?v=sA8PaIw5gcE

“You've gotta swim, swim for your life. Swim for the music that saves you when you're not so sure you'll survive. You gotta swim and swim when it hurts. The whole world is watching, you haven't come this far to fall off the earth. The currents will pull you away from your love. Just keep your head above.... I swim for brighter days despite the absence of sun, choking on salt water. I'm not giving in, I swim.” 

My fiancee promised me that things would get better. Overnight I went from a pale, white ghost with sunken eyes, to getting my color and life back! 

To everyone who has ever donated blood or plasma: THANK YOU!!!

Here is a picture of me, holding the drainage tube+ ball that were coming out of my tummy for a few days. I joked about it being a grenade...

TUBES OUT

The bleeding let up after a few days, in which case they finally removed the drainage tube from my stomach. Good thing too because my hip bone was getting sore from that stupid plastic tube rubbing on it! When they took the draining tube out of my stomach, it felt STRANGE. I only allowed my favorite doctor the honor of removing it. First he snipped a couple stitches that were holding it in place, then 1-2-ready?-deep breath-YANK! There is no feeling that compares to a long tube, probably a couple feet in length, being whipped out from your body. Again, WEIRD. I yelped when he took it out, and then I cried. The doctor, asked me, “Are you mad at me now?” I was NOT happy, but I was relieved to have that stupid tube out! 

By the way... weird medical junk+ sleep deprivation+ narcotics = emotional breakdowns. Everything becomes super dramatic and anxiety attacks can come without warning.

Although surgery #2 wasn't as smooth as I imagined, Jesus carried me through that wasteland of death and into the land of the living. I survived, I kept on swimming and I was reminded that God provides strength to the weary. 

By the way that is the meaning behind the wings in my ankle...

"He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles;they will run and not grow weary, they will walk and not be faint." -Isaiah 40:29-31
 

Surgery #1 - Subtotal Colectomy

In the Fall of 2011, I was having another bad flare of Ulcerative Colitis. I was I was rushing to the bathroom 30 times a day and was nearly anemic from the bleeding ulcers in my colon. Since food shot right through me, my body wasn't able to absorb any nutrients that it needed. On top of that, I hadn't slept for literally weeks because my guts felt like they were on FIRE. I was tired, weak, frail and empty. I felt like a walking GHOST. More than that, I was out of options for treatment. I'd tried all the reasonable medicines to help with the condition, and was again on the verge of hospitalization. I made the decision I’d always feared- surgery- permanent removal of my large intestines. Surgery is the only known “cure” for Ulcerative Colitis. I was pretty shook up for a few days after I made my decision, mentally as well as physically. It’s hard to keep your cool when your body feels like its on fire and your life is slowly burning to the ground. However, after a while of freaking out, I realized I was actually excited to get my stupid colon out!

TO THE MAYO!

I also decided that if I was going to go through with this, I would want the Mayo Clinic to do it. Since I live in Montana, this meant I would travel across a few states to get there. I will say this about The Mayo Clinic: they make you jump through A LOT of hoops before they will touch you, but once you are finished jumping their hoops, they take AWESOME care of you. I won’t re-live all the extraneous tests I had to comply with prior to surgery. Let’s just say I drank a lot of radioactive, nasty tasting liquids, which made my crazy stomach extra upset. =/ A few “hoops” I jumped through: CT scan, colonoscopy, MRI, and lots of blood tests. (All tests I had recently done in MT as well...joy!) 
BTW I am a professional at chugging  nasty tasting liquids and having scopes shoved inside me! Bam!

Truly though, the Mayo Clinic has the BEST doctors and surgeons in the world. One other reason I went to the Mayo was because they would be able to do my surgeries “laproscopically” - Surgery that uses a laproscope with a video camera and surgical instruments inserted through SMALL INCISIONS. I am really proud of my scars today, but also happy that they are small-ish. Honestly, who would want to be cut any more than they need to be?! Here's me the night before surgery, marked and labeled with surgeon's initials.  

SURGERY DAY -December 8, 2011- subtotal colectomy. 

Such a blur. I checked in, waited, put on an ugly hospital gown that was 5 sizes too large, waited, got poked with needles, waited, answered a bunch of questions, waited, did some prep (I will leave this to your imagination) hint- they were about to take out my plumbing, and wanted to be sure I was truly empty- then more waiting, then finally someone came and rolled me away to the surgery room. Once they come to fetch you, there is no going back. 

Nobody gets to stay by your side to hold your shaking hands. I remember feeling so small and bare, so stripped of everything. All that remained was myself, cold white walls, and a team of surgeons who had everything but their eyes covered. Nothing was familiar, everything was uncertain. I was happy to recognize the anesthesiologist, whom I had met an hour or so before. Reality felt like a dream right before they gave me the anesthesia. I remember thinking, “Oh my gosh, this cannot be real, these people are actually going to cut me open and take my guts out??” I wanted to jump off that operating table and book it down the hallway. For the record, I didn't...

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand,” -Isaiah 40:10 - This Bible verse was repeating over and over in my mind..

I was not alone; the Lord was with me. I heard His whispers in my ear, bringing comfort to my frightened soul. He promised not to leave me and He helped me remember to breathe. Before I knew it, I was given a spinal tap to dull the coming surgery pains, then the anesthesia, and then I slept while they operated.

WAKE UP- IT'S GONE!

I awoke hours later in a recovery room, colon-less and groggy, but feeling much better than hours before! I think I asked the nurse at least 50 times, “When do I get to see Jim??” (my fiancee)

Once I was awake enough, they rolled me to my hospital room, where Jim and my mom were waiting to see me. I got really excited and waved like a little kid. Gosh, I wish Jim had video taped my arrival, for more than one reason. Seriously, I would pay money. 

Quotes directly after I arrived at my hospital room:

[Jim] “Did they give you some good drugs?”

[Me]  “No, not really.”

FALSE. Haha!

I apparently insisted on texting everybody I knew and letting them know that I survived. I would pay money to see those texts. I also made some calls to friends and family, none of which I remember.

[Me to Jim] “You have to leave the room, so you don't see my butt.”

The nurses used a special machine to lift me from the mobile table-bed to my hospital bed and I was really concerned that Jim might catch a glimpse of my naked butt through the drafty hospital gown!

[Me] “There are mountains on my door.”

[Nurse] “Its for the doctor.”

[Me] “Whatever, its because I'm from Montana.” 

I really was convinced that they put those mountains there for me!

LESSON #1 – Oxycodone makes Kelsie crazy.

The deal with narcotics is that they work well for pain, but either tend to make a person insane or vomit. Or both. I was blessed that they didn't make me sick. I did become super giggly, which was a massive problem, since I'd just had my abs sliced through and stitched back together!

LESSON #2 - Laughter is not always the best medicine.
Laughing causes pain--> which causes crying--> which causes more pain and more crying, etc. Vicious cycle.

I got really mad at Jim once because he was 'making me laugh', when all he was doing was eating a sandwich!

LESSON #3 - Drugged Kelsie's sense of time is clearly skewed.

The doctors wanted me to get some food in my stomach right after surgery. (Since anesthesia puts a halt on normal body functions, the food would encourage my small intestines to wake up.) The nurse only took about a minute to bring me some toast, but to me it felt like FOREVER. Yelling with tears in my eyes I cried, “How does it take TEN MINUTES to make TOAST?!?”

LESSON #4 - Anesthesia can take a looong time to wear off. 
Here's one more thing the anesthesia affects - the bladder. Although I was aware that I would take up with a catheter in after surgery, I was not warned that it could take literally days for my bladder to turn back on...

[Jim] - "I've never been so happy to hear another person peeing."
hahaha! I was rewarded with a My Little Pony Sticker for my success! 

ANATOMY CHECK

Atop my temporary mental instability from the narcotics, I now faced the reality that my small intestines came out through my stomach. The ostomy nurses walk you through everything before surgery, so you know what to expect. Honestly though, how prepared can a person really be to face the 'red knob' of intestines that comes out of one's own stomach?? I remember not wanting to look at, or touch, or have anything to do with the poo sack stuck to me. Regardless of how I felt, the ostomy bag was now a part of me. The shock faded fairly quickly, and I learned to care for my ostomy, but it was SO weird at first! Living with an ostomy has its frustrations, but it was a whole lot better than living with a busted colon!

One last memory that shall never fade away from my brain is getting out of bed after having abdominal surgery. First of all we use our ab muscles for just about everything. Mine had just been sliced through and stapled together. It took 2 extra people to help me sit up the first time. I can still remember the strange feeling of my guts shifting inside of me. 
Sloshy - that would be the word to describe the feeling. I would experience this weird shifting feeling every time that I got out of bed for the next month or so. 

Surprisingly the nurses had me up and walking within an hour after surgery (with Jim's support). I walked to the door way and back! (where I found my mountains). Walking was encouraged because the more walking a person physically does, the quicker they will heal.

Jim and I with my Christmas/surgery gnome
(a lovely gift from my [now] mother in law!)

I guess that sums up the majority of my memories from my 1st surgery, or at least the stuff I thought to be noteworthy. Moral of the story- Surgery was scary, but the Lord Jesus Christ provided me with the strength to endure. 

Victorious Ship

Introducing the U.S.S. Gutless! 

So what's with the ship?? All the ink on my skin has personal meaning. Its symbolic of something significant in my life. Sit back tight, and I'll explain my ship...

In 2006 I was a freshman in college in Montana. My first week there marked the beginning of my health struggles. Prior to that, I was an average teenager with nothing holding me back. It took a year and a half of ongoing tests, inaccurate diagnoses, and confusing circumstances before I was finally given a name for all my health drama. The name: Ulcerative Colitis.

At this point I had transferred to a college in Minnesota for my sophomore year. I still had no idea what was really wrong with me, but soon my life would be turned upside down. After months of increasing abdominal cramping, I was in so much pain that I literally thought I would DIE. I asked one of the RA's at school to drive me to the Emergency Room, doubled over in pain from my guts. 

A CT scan showed that my entire colon was inflamed. "WHAT IS A COLON?", I asked naively. - Side note - a COLON is more commonly known as the large intestines. Its the 5-6 feet that houses your poo. Mine was a WRECK. I was admitted to the hospital for a week, given only liquids to consume at first, and a TON of IV steroids through my veins. "Solumedrol" these highly powerful steroids are called. If you've read my blog, Roid Rage, where I explain the super fun side effects of Prednisone, just imagine that intensified! WOO, Nutso!! Hooked up to an IV pole, in a hospital for a week, wide awake from the 'roids pumping through my veins, hungry and in pain. Yuck. Anywho, those crazy 'roids really calm inflammation down. 
Here's me pretending to be buff from the steroids.... haha

Fast forward- 6 months to my Junior year in college: Another flare of UC, pain and inflammation out of control again... more hospital action. 

Fast forward one more year:  another flare, admitted to the hospital again, this time back home in Montana. (Yes, I am pretending to drink the IV fluids in the picture below- it really resembles Mountain Dew, ya know!?)

At this point I had decided that it must be my calling in life to visit all the "B" hospitals. I could write reviews on the hospitals in Bemidji, MN, Brainerd, MN and Billings, MT.

THINGS I LEARNED FROM HOSPITALS:

1. Hospitals are not for sleeping. They are for receiving medicine and getting your blood pressure checked every 2 hours, at all hours of the night, especially when you're sleeping- IF you can sleep...

2. They’re expensive. Really, really expensive. 

3. There needs to be more artwork! Come on, its not exactly an exciting place to be, so let’s cheer it up!

Fast forward one more time to December 2011 : I had tried all the medications available to treat UC and had decided to get my colon AKA large intestines removed. Dun, dun dun...

...Three MAJOR surgeries later, I was blessed to be able to get rid of the ileostomy bag that I lived with for 6 months and THANKFUL to have my plumbing hooked back up! (Yes, I still go to the bathroom like everybody else, I just have a lot less pipes to go through...)

This past year I've had my guts cut out and my abs sliced through 3 times. I've almost bled to death once, I've had a tube shoved down my throat to resolve an intestinal blockage that was making me constantly puke. I've had eroded skin on my tummy, pulled stitches, staples throbbing in my anus, loneliness, and extreme sleep deprivation. I've wandered hospital corridors, IV pole in hand, one baby step at a time, (with my awesome [now] husband and mother by my side.)

So yeah, to say the least, its kinda been a rough year and young adulthood so far.

As the band Athlete says in one of their songs Wires, "Looking at you now, you would never know." Truly, looking at me now, no one WOULD ever know what I've been through!

I've always felt like a boat in the rough seas, being tossed about by the angry waves. But guess what? My ship keeps on sailing. The Lord has always kept wind in my sails and He has kept my ship from crashing into the rocks.  Interestingly enough my name (Kelsie) means "victorious ship".

So I guess my ship is an outward sign of the storms I've sailed through/am still sailing through. 

"The easy part of a storm is knowing there's an end. The hard part is believing you will get there." - Anonymous

I wish I could say that things will always get better, but sometimes our circumstances don't improve. Believe me, I know because I was just re-diagnosed with Crohn's Disease. But there is HOPE, there is always hope, and it is found in Jesus Christ alone. 

By God's grace and mercy my victorious ship sails on, despite the raging seas.