Re-diagnosis In Retrospect

Some things simply take time. Often things don't seem awful in retrospect, despite what was once believed. Instead of complaining and being horrified at a situation, we can look backwards and somehow actually be thankful.

HOW IT ALL WENT DOWN...

After my final surgery, I had a lot of pain following my recovery. I blamed the pain on all the logical things I had been warned about by doctors. Things like “You will have pain for quite a few months after surgery.”I believed things like, “This is normal”. The problem was the fact that everything I was experiencing was NOT normal...

LOOSE STAPLE?

I realized something was most definitely wrong about 3 months after my final surgery. Sorry if this is too descriptive: I was having very sharp, pinpoint pain in my anus. I was fairly certain that one of the staples that surgeons had used to attach my J-pouch was breaking free. I could conjure up no other explanation for what felt so horrible and knife-like!

HEAR MY CRY!

After many phone calls to my doctors, I eventually convinced them to do something about it. Side note-I think that after all I've been through, I should be able to tell when something is NOT right with my own body, right?? I was frantic and doctors wouldn't seem to take me seriously! I remember literally being in tears explaining my pain to the nurses, and just being blown off and told to wait until the following week. It took a compassionate receptionist to take pity on my situation before anything was done to help me. *Ahem* Attention all Nurses- don't ever, EVER lose the love and empathy for patients, pretty please? =)

My doctors finally ordered a scope of my small intestines. 

SCOPE

When I say “scope”, I refer to a colonoscopy or a sigmoidoscopy. Both are very unpleasant procedures where a camera tube thing is shoved up the anus to map the landscape. Sometimes they put you under and and sometimes you are awake. (I always opt for sleepy time.) Oh, and I know the Endoscopy guys at the Billings Clinic by name. Kim is the coolest. =)

Process of a scope:

*Drink insane amounts of a laxative beverage and/or use enemas to empty out the guts. Both prep work leave your butt raw. =/ Super cool, fun, adult stuff. Jealous?

*A little camera goes up the back entrance ;) and navigates the intestines, pausing every so often to take pictures and/or samples for biopsies.

*There is an air blower thingy that goes ahead of the camera. Imagine a leaf blower, inside your butt. Teehee. After the procedure, the person is filled up with air. A person wakes up groggy and gassy. Hooray. 

Note-When a person has Ulcerative Colitis or Crohn's Disease, having a scope done becomes routine. I've endured quite a few, between colonoscopies, sigmoidoscopies and pouchoscopies. I have a collective total of at least NINE.

ULCER

The scope revealed an ULCER inside of me. You see, this was pretty disconcerting news, since I'd just rid myself of a condition called ULCERative Colitis. I'd had my guts removed, cut out, rearranged and stapled back inside of me to get rid of autoimmune disease, and now THIS???

It was one tiny little ulcer, the size of a kernel of corn. It hurt so terribly either because #1. It sat directly on a nerve ending (or) #2. Was on the junction where my J-pouch was attached to my anus. Either way it was excruciating and going to the bathroom was a nightmare. It felt like I was passing glass.

Anyway, this ulcer improved a bit with time and with the help of nitroglycerin cream -Yes, the stuff they use to make explosives- it was prescribed for my rear end. Hmmmm?

RETURN PAIN?

A couple months later I was experiencing the same stabbing, pinpoint pain, except at a different location. Instead of my left side, I felt it inside the right side. This time though, the intermittent pain was accompanied by a +100 degree fever. Couch-bound and in misery, I was forced to annoy the doctors once again by insisting that something was awry.

ULCERSSSSS

I had another scope done, (tally another one to the books). Much to everyone's dismay, the scope revealed LOTS of ulcers in my small intestines. I asked the doctor, “How many ulcers?” The response- “I lost count.” There was also terrible inflammation in the sinus tracts of my guts. All this strongly suggested I either had Crohn's or an infection. I was hoping for just an infection. With all my heart.

SOMETIMES YOU JUST KNOW

While waiting to get the results back from the biopsies they took from that scope, I had such a sinking feeling in my heart. I could not shake it. I was still waiting for the official results, but I already knew I had Crohns.

THE VERDICT

The results came back with an answer a few days later. The verdict was indeed Crohn's Disease. BOOOOO! Crushed and in dismay, I was forced to take responsibility for my (now again) crummy health. Besides living with the constant pain in my butt, I had to own up to the diagnosis, investigate medicines, struggle through work and carry on. After everything I'd been through, hearing this news was a pretty low blow- a forceful punch in the guts. Hahaha- sorry lame pun. Seriously though, you better believe I was upset!

LOOKING BACK

Looking back now, I am able to be thankful for a few things. Not necessarily thankful with the reality of my situation, but with the timing of things. Yes, I'd certainly be glad not to be a “Crohn-ey”, but God is so gracious with the way He aligns things. If you read about my 1^st and 2^nd surgeries, you know I had to have a colonoscopy prior to J-pouch construction to make sure I didn't have Crohn's. If a person has Crohn's, surgeons refuse to create the J-pouch. Had there been evidence of Crohns Disease at that time, my colon would have been removed, but I would have been stuck with the ileostomy bag indefinitely. And if you read about my 3^rd surgery, (before they reversed my ileostomy), I had to have a “pouchoscopy” done to make sure things looked tip top shape. That scope showed my small intestines in “pristine condition”, not an ulcer in view. I think the fact that this disease was masked was a huge blessing in disguise.

There are times when we just have to hang onto God while hanging in there! Never does He leave our side. Sometimes we just have to wait until relief comes. One day relief will come. “He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” -Revelation 21:4  If you know Christ as your Savior, then you also share in this promise! =D

“When it feels like we're not headed anywhere fast, I know that Your plan's in motion, like the great Pacific Ocean...”

Ruth- Miracle Photo

http://www.youtube.com/watch?v=7xa71v8tyYQ

Things might not always make sense on this end of things, but I trust in God's goodness through the miseries of life... 

Apathy, Hope and a Doc That's a Dope

I had a doctor appointment this past week, with a new gastro-intestinal (GI) specialist. (I had to switch due to insurance providers.) It was a horrible appointment. I spent most of the appointment in  shock. Granted, I've had doctors make me cry, but usually only because they were shoving a camera up my butt or yanking a tube out of my stomach. I'd never had one hurt me simply with words. 

My advice to anyone dealing with any ongoing condition ---is to find a doctor that you get along with, who will help you fight for your health. It may take some searching, but find someone who is genuinely concerned for you. DO NOT SETTLE. If your doctor is uptight and has no capacity to sympathize...it may be time to move on! Lesson learned. 

On this particular day I realized that not every doctor suits every patient. I also realized that not everybody has hope for other people. And on this day, I couldn't hold myself together in the face of uncaring negativity. 

So there I sat, trying so hard to appear well-put-together. Every day I push through the pain of living with Crohn's Disease, but truth be told – I struggle. I've been struggling for a long time now. I'm think I'm generally skilled at living with this crappy condition, but some days I fall apart. Its been a long, ongoing, uphill battle the past 6 years. 

So, highly knowledgeable-well paid doctor, I must ask you some questions...

*Do you detect the grimace of pain on my face as you ask me to lay down on the exam table? Three separate times my abs were sliced and diced through. Almost a year after my final surgery, my abs still get sore when I depend too heavily on them. Leaning backwards causes this stress.

*Do you notice the lovely sweater that I'm wearing? 

Its form fitted and I longingly stared at it in my closet for half a year, when I lived with an ileostomy bag. My intestines came through a hole cut into my tummy. Can you imagine? 

*Do you notice how my bones stick out? I'm thin- too thin. I've been trying for years to gain healthy fat, but my body is busted. 

*As you place your stethoscope on my skin, do you consider my constellation of scars? Scattered across my stomach, hips, belly button and lower pelvis, the scars are a reminder of the battles I've lived through. 

Sadly doctor, you don't seem to notice any of these things. No words of hope come from your lips, nor any optimism. You are COLD, cold like the operating table they cut me open on. My daily burdens to you are only routine. And that which is only routine for you is burdensome to me. I am simply your income, not your heart's concern.  No sympathy is extended and no empathy is felt. You're a healthcare provider, yet you don't seem to CARE. Doctor, you are apathetic to the core. 

*I must ask- If there's  no heart behind what a person does, is it not done in vain? 

*How can you refuse to have hope?? There is always hope. Your rebuttal states that you “don't want to give false hope”. I say to you- that's an excuse. Oh, how your callous heart is a heavy weight that sinks mine! You don't understand my situation, nor do you want to. Perhaps its because it would be far too heavy to feel this thing called “compassion”. You choose to remain in your stubborn unbelief.

*I ask this to you, doctor: If you don't have hope, then what do you have? Granted, not everybody who is sick becomes well. Not everyone with a disease endures...and in the end, we all die. Clearly this life isn't forever. But if you take away hope, how do you go on? 

I can live with this diagnosis, but I refuse to live without hope. I pray God heals me, because doctor, your blind heart really needs to see a miracle from The Great Physician Himself. (Although hope is not meant to be something tangible.) Regardless of whether the Lord chooses to heal me, I look forward to being with my God forevermore. I've got the promise of heaven to hold onto. That day will come, but until then, I hold onto hope and Christ's rock solid promises.

HOPE – by Kelsie Newlin

This is hope that can’t perish,
That raises the dead
When life gets too heavy,
You lift up my head.
My refuge, my stronghold,
My heavenly king,
You lead me thru darkness
With everlasting peace.

I will not be forgotten
You’ll be with me thru pain
Trust will not be forsaken
For I know you by name.
You are the God who rescues
And comforts in distress
You’re the merciful Savior
Tho my faith goes thru tests.

You see every heartache
And give ear to my cry
Tho over and over,
I question you, “Why?”
Faith must face trials,
Be refined in the fire
For my heart to become more genuine,
to learn to persevere and mature in Him.

“Be strong and take heart, all you who hope in the LORD.” - Psalm 31:24

Everybody Wants To Be Free

Everybody wants to be free of something. Whether its a habit, an addiction, an illness or an obligation, we all desire to be free of something.

I work at a laser eye center, which has brought this topic to mind recently. I guess I never realized that so many people wake up in the morning and aren't able to read the time on their alarm clock! Blurry vision is just one thing people wish to be free from. I must say its really neat to be part of a team that helps fix people's vision and restore their sight!

The glasses graveyard!

Throughout my ongoing battle with health issues, my heart has longed for many things. I've desired to be able to eat the same unhealthy junk that everyone else eats. I've wanted so much to be able to make plans in my life not have them sabotaged by plummeting health. I've ached to be free of medicine.
Random side story - After my third and final surgery, I was planning on having a Prednisone burning party. I was going to burn all my bottles and bottles of this anti-inflammatory, rage causing drug that I had been enslaved to for so many years. It was going to be great! However, after being re-diagnosed with Crohns, I ended up having to start taking it again. Instead of destroying the evidence of my past and celebrating my freedom from it, I faced just the opposite. Man, it would have been flippin' awesome to be medicine free. More than anything though, during my journey through downward hills and valleys, I've longed to be free of sickness. 

Both Colitis and Crohn’s can be extremely debilitating diseases. Painful symptoms can cause one to become withdrawn from social situations. Obviously its easier to sit at home when feeling weak and yucky than to plaster on a smile and face the crowds. Any outings, whether for work or fun, are consumed with the constant search for the nearest bathroom. (which by the way is pointless, because upset insides have no schedule...)

I have also struggled to be free from anxiety and fear. It has ruled my heart at times. It has taken my thoughts captive, to the point where I didn't even recognize that I was allowing that! Deep down I've always carried dread of my next downfall and all the terrors it may hold...

Regardless of how painful life can be, I realize that the Lord frees us from our trappings and make us whole again. He reaches out to us, continually inviting us to bring to Him our burdens. "If the Son sets you free, you will be free indeed." -John 8:36  

Although I don't always understand the things I have to deal with, I know that when I hand over my burdens, my heart feels the weight lifted and I can breathe easy. Sure, maybe I will have to inject myself with medicine the rest of this earthly life. And perhaps I will have more nights spent at home than out doing fun stuff. I might be stuck with this auto-immune disease. But no matter what I deal with, I know that the Lord has set me free of being weighted down by my sin and He continually heals my heart. 

"The Lord is close to the brokenhearted and saves those who are crushed in Spirit." - Psalm 34:18

Never Say

Just a few tidbits offered from my side of living with Crohn's Colitis:

Things never to say to someone with IBD:

“I wish I were skinny like you.” 
Please understand that when I hear this comment, I instead hear, “You’re lucky that you’re sick, so you can look good!” Hello, some people are thin because their body isn't getting the nutrients it needs! Besides being malnourished, people with IBD are often in a battle of trying not to lose any more weight. Despite best efforts, vital pounds are often lost. Trying to be a healthy weight can be a battle from both ends. (I know this is the opposite problem most people have.) Usually people would be willing to loan a few pounds...but hey, for the record I’d rather be fat and free of disease than skinny and sickly. ;)

“I wish I could eat healthy like you.” 
First of all, you can eat boring white rice like me if you really want to! Nobody’s shoving greasy fries down your throat.  Haha! Secondly- I wish I could eat delicious, greasy, overly sugary junk without a second thought as other people can. Jealoussss. 

“Did you just get your wisdom teeth out?” 

I've heard this comment one too many times not to bring it up. Commonly prescribed drugs for IBD, often have a side effect of swollen/puffy/fat face. I know sometimes people blurt things aloud without thinking, but pointing out the fact that a person's face looks like the moon is awkward. And having to explain it is even more awkward. 

“You don’t look sick.” 
I am not sure if this is a compliment or an accusation. From my experience, when a person lives with chronic disease, they get pretty good at hiding it. Just because someone looks fine on the outside, doesn’t mean everything is great inside. We all know this. Fact: My guts are bleeding day in and day out and that is not normal. 

“You look tired.” 
Yup , auto-immune diseases are exushating! The body is waging a constant battle against itself. This attack takes a toll... Yawns increase, lack of energy, etc. Besides that, when a person is in a flare up of Crohns/Colitis, they aren't sleeping well, and sometimes not at all!

I suppose this concludes my lesson of conversational etiquette regarding IBD! There's so much I could say about living with a crappy colon/none at all, but I shall stop here. 

Humira

After weeks of frustrating and conflicting information from insurance companies and pharmacies, my mail-order Humira finally arrived! I'm not great at explaining how Humira works just yet. There's some crazy awesome science behind it, but I'm still learning. I know its in a biological class of drugs that treat auto-immune diseases by suppressing the immune system. (Since my immune system is messed up and attacks my intestines, Humira undermines this wrongful occurrence ) Its a subcutaneous injection, meaning that the medicine is injected under the skin...with needles...GASP!

TATS VS SHOTS

My body is covered with plenty of permanent ink, which is supposed to mean I'm tough or something. So not the same experience! The sensation is completely different. Getting a tattoo feels more like scraping an open wound over and over again, whereas getting a shot is very pinpoint. Not to mention that terrible feeling as the medicine is being pushed in...YUCK! In my opinion, tattoos and injections are incomparable.

[SIDE NOTE] In case you're wondering about getting a tattoo while on Humira: I asked my GI about this and she recommended (not that she recommended tattoos, but said that if I'm going to do it regardless), do it when the medication is at its lowest dose in the body....like when its almost time for my next shot. Then post-pone the next dose a few extra days. For myself, I do my shots every 2 weeks. So on day 10 after my shot, I got the tattoo. I waited 5 more days after getting my tattoo to do the next injection. Reason being, that (obviously) while on Humira the immune system is down, and therefore the risk for infection is greater. Basically I wouldn't want to get a new open wound i.e. tattoo when my immune system is at its lowest to fight off potential infections. I experienced no problems with my tattoo healing and it healed up just as quick as my "pre-Humira" tats. 
  
MIND OVER MATTER

I am one of those pathetic people who practically cry every time they get a flu shot. Knowing I had to inject myself with shots, was quite intimidating. The brain is a powerful weapon. With fear stacked, it can destroy you, and with courage, it makes you strong. I know getting shots are not as big of a deal as I make it, but for people like me, its a good thing drug companies created Ativan! Also its a good thing I have a husband that loves me enough to pin me down and stab me in the legs/stomach with needles. 

The starter dose of Humira is 4 injections. Two weeks later, it decreases to 2 injections and then finally down to one injection every couple of weeks. I guess the starter dose is so high to help kick start the benefits of the medicine.

Me trying to be enthusiastic about the 4 injections

The design of Humira is nice because it is a tiny needle, which is never actually ever seen. The medicine and needle are completely enclosed inside the plastic casing mechanism. Its pretty easy to use. 1. Clean skin. 2. Push deployment button to release the needle into the skin. 3. Once the button is clicked, the medicine distributes quickly under the skin (and it burns) The burning sensation only lasts 15 seconds, but its not pleasant. I'm pretty much a wimp and cried. Ugh, did I mention I hate shots?

ADIOS, $1,000!

The second shot I did, I goofed up. I was nervous (because I HATE shots) and wasn't keeping enough pressure on my skin with the pen when I clicked the release button. I sat helplessly and watched the pen launch this insanely expensive med. OOPS. Nothing quite like watching a thousand bucks ooze over your leg!

COST
Humira is a highly expensive medication. I think its like $1,500 per injection (without insurance). Hey good news though!...Although my insurance covers a large portion, there's an additional free Humira co-pay card that everyone who takes this drug needs to have. My box of 2 pens costs me a total of $5. Yes, from $1,500 to only $5. I only found out about the co-pay program because I have a good friend who works at a clinic. Just Google "Humira protection plan" and give the pharmacy the co-pay card info.

SIDE EFFECTS

Short term side effects vary from person to person. There is always a chance of being allergic and going into anaphylactic shock. Thankfully this was not my experience. The only issue I had came several hours later. The injection sites became itchy and puffy. Ice packs on the skin took care of this problem. It occasionally swelled up for a couple days after the shot, then went away for good. Apparently this is a typical minor sensitivity and went away after a few days.

Temporary rash at injection site on belly

STAY AWAY, SICKO'S!
Do I really need to repeat that I now live with a compromised immune system? I literally inject immune suppressants into my body. I don't have the same fighting advantage against colds and viruses as other people. So friends and family, please don't be offended, but if you're sick, let's reschedule our face to face coffee date. =) Seriously, don't breathe on me!! 

LIVING WITH REGRET?

I avoided biological “adult drugs” for years and years and years, and even chose to have my colon removed so I wouldn't have to tango with them. Turns out, they're quite helpful! Do I regret my decision to have surgery, now that Humira seems like a good option? Answer- No. Why? Well #1 My colon was in SUCH bad shape, I have a hard time believing it may have been helpful. #2 At the time I made that decision, it made the most sense. #3 There was no way I could ever have anticipated this outcome... If Colitis wouldn't have crossed over and became Crohns, I WOULD be disease free and WOULD HAVE BEEN medicine free.  Unfortunately I am that rare case of odd outcomes. Fate had a different plan than I did. 

As Relient K says, "I'd rather forget and not slow down than gather regret for the things I can't change now."

http://youtu.be/OF_UMjB1SbY?t=7s

"Cause I could spend my life just trying to sift through

what I could've done better, but what good do 'what ifs' do?"

RUNNING FROM THE SCARY TRUTH

Often the thing we run from for so long is the one thing we need. Not to say that all my surgeries were a loss, but its funny how ironic things sometimes end up. It reminds me of how as a people, we often run from God. We indulge in our sins and hide from the One who can set us free to live in His forgiveness and peace. We are stubborn and are easily frightened by what we do not know. And in the end we look back and wonder why we let fear grip us for so long...

In conclusion, "H day" was stressful, but I think maybe also the beginning of relief. Not to jump the gun, but I feel it helping my symptoms. I have less crippling ulcer pain. YAY! For the first time in a very long time I'm like, “Oh, so THIS is what it feels like to not be in constant pain!” YEAH! I'll take it! Thanks, Lord!

Here's an update! -->2 Years On Humira

J-POUCH

SOME DAYS I FORGET that I'm gutless. 

Its hard to grasp that my anatomy is missing integral parts. After all, I look no different than anybody with their large intestines! Likewise, some days I forget that my insides used to be my outside. I forget all I went through to get where I am now. I hope that I don't ever take for granted the fact that now I can wear anything I want without worrying about disguising the ostomy. I hope I never forget the months I had to hold my seat belt off my lap while I drove my car. I hope I never take for granted being able to sleep on my stomach. I hope everything I've been through stays with me, so I can remember to be thankful to be put back together (well minus a few feet of guts).

ANATOMY

When I mention to people that I have a j-pouch, they usually give me a quick once-over glance to search for a bulging bag strapped to my tummy. Haha! (And this is usually AFTER I explain the surgeries I went through to be reconnected!) Because of this more than often occurrence, I thought I should spend a few sentences, for those who care, to bring people up to speed on the great and mighty J-pouch!

J-POUCH?

So what is a J-pouch? What does it look like? How does it function differently than a colon? Why is it called by that name?

As we all know, everyone has both a small intestine and large intestine. The large intestine is approximately 5 feet long, and the small intestine is about 22 feet long. Kind of backwards naming, huh? However, the large intestine is much wider in diameter, so maybe that's where it came from. (Imagine comparing a small garden hose to a dryer vent and you get the picture.) When a person has their large intestines removed, they lose the portion of their body that had the job of holding waste. What then, is going to house their waste? That, my friends, is why the j-pouch is created! Surgeons construct a new “poo house” from the lower part of the small intestines. It is called a “J-pouch”, because it looks like a “J”! Get it? Look, here he is, in all his glory!....

(Notice the bordering guts [colon] missing) A regular person's anatomy looks like this second diagram...

FUN FACT OF THE DAY- Did you know the colon and the large intestines are one on the same? The names are used interchangeably. In my experience, somehow most people have no idea what a colon even is. They think its some random non-essential, dispensable body part, like the spleen. They took my colon out and its gone forever. When the bordering guts are removed, like mine has been, everything changes. 

DIFFERENCES

Just because I have an internal place to house my waste, doesn't mean the pouch functions the same as the colon did. For example, one of the main jobs of the L. intestine is to absorb excess water into the body.The s. intestines, try as they may, will never quite measure up.

Another main job of the L. intestines is to digest food more thoroughly. The little guy can't take on nuts, berries or raw veggies like the big guy could. Adios, delicious salads!

One last obvious difference is that my tiny, man-made pouch cannot hold as much waste as a 5 foot tube could. (Duh) I therefore have to use the toilet more often. This seems a fair trade for having my insides all on the inside again!

J-POUCH AND CROHNS

I only have my own experience to go off of, so I assume other j-pouches function differently. Since I have Crohns Disease, I experience a lot of pain from the pesky ulcers in my small intestines. The pain comes from gas pushing on the ulcers where my pouch was stitched to my anus. For a brief 5-10 seconds when gas puts pressure on the ulcers, I am on ---pause---. It literally feels like a balloon is being inflated inside my butt! Super uncomfortable! This phenomenon feels to me like a deep nerve pain, which comes and goes. So what's the big deal, why don't I just use the bano and get the gas out? Well I don't understand it, but this new anatomy doesn't work like the old one, and well, its easier said than done. I've learned to just grin and bear the ulcer pain when necessary. After all, the world doesn't stop and wait for you when you have to stop and catch your breath.

ARE YOU OKAY?

Sometimes its hard to mask and the grimaces of pain displayed on my face...

Yet how do I respond to this question?? I've contemplated responding with, “Usually no.” However, I usually just say “Yeah, I'm fine” due to the fact that there's no easy way to tell co-workers/etc that my butt hurts unimaginably so. I hate lying to people because I'm a terrible liar and people know I'm full of it, but hey, what would you do? Perhaps I should just start telling the truth...

I imagine a conversation might go something like this...

Concerned acquaintance- “Kelsie, are you okay?”

Me - “No.”

Concerned acq.- "What's wrong?” 

Me- “My butt hurts.”

I just might try this script out sometime, just to see how it blows over! Haha

STAPLES

Despite pain, I am happy to have my j-pouch inside of me, working hard each day to do his job! Although the small bowel was designed by God to be a middle man, between the stomach and the colon, mine is learning his new responsibilities. I'm quite attached to him, and he to me. ;) When surgeons created him, they used hundreds of staples. 

These zillions of tiny staples are now encased in flesh and will be in me forever. Thankfully they don't show in airport body scanners, probably because they are made of titanium. Good thing they are invisible to the TSA, because I've been harassed enough by airport security when I had my ostomy bag, thanks! 

That's pretty much the skinny on the J-pouch. Hopefully now there are a few less people confused and assume a J-pouch is some made up alien race from Star Trek. Who knows? You do!

Choices

Fact: Sometimes in life you just have to make a decision and hope that it doesn't mean you're holding a gun to your own head. 

MXPX's "Aces Up"

https://www.youtube.com/watch?v=4NFwJtM1f3M

“Just deal the cards and hope that you get aces, And when you play your hand, put on your poker faces, Cause life just don't deal aces, You may have to bluff sometimes, You may have to bluff sometimes”

Any time I've researched Humira, I've always been creeped out by the warnings labels. It usually goes something like this...

"Warning: Serious infections have happened in people taking HUMIRA. These serious infections include TUBERCULOSIS (TB) and INFECTIONS caused by VIRUSES, FUNGI, or BACTERIA  that have spread throughout the body. Some people have DIED from these infections. HUMIRA may increase the chance of getting LYMPHOMA, including a RARE kind, or other CANCERS. HUMIRA can cause serious side effects including hepatitis B infection in carriers of the virus, allergic reactions, NERVOUS SYSTEM PROBLEMS, BLOOD PROBLEMS, HEART FAILURE, certain IMMUNE REACTIONS including a LUPUS-like syndrome, LIVER PROBLEMS, and new or worsening PSORIASIS.” 

Usually followed by some cheesy picture like this:

"You too can wash smelly dogs if you take Humira!"

Sign me up! Right? Haha! No, if you're like me, you probably read the first sentence of the warning label, cringed, and decided its bad mojo. However, my new GI doctor said something that has stuck with me the past couple months. She said that the point of life is survival. And since my body is internally destroying itself, I might need to weigh my current symptoms with the possible side effects. Life sometimes presents us with bad and worse and we get to make a choice and hope for the best outcome. So that's what I'm doing. Its not that I'm compromising...I'm just doing what I need to do to survive. 'Cause man, living with this constant pain is crippling. 

Sidetrack- Ya know how people tend to hold painful areas when injured? I was thinking it would be great if I did this. I would be constantly grabbing my butt. Hahaha

Making this decision hasn't been as easy one. Especially since I opted to have my guts removed last year, so I would never have to be on this highly expensive drug! Also, injecting an immune suppressing serum into the body isn't a regular thing for most people. 

Getting the process going to start taking it has been a real headache. I've spent at least 6 hours on the phone with insurance companies, specialty pharmacies and doctors. In my experience its easier to get pre-authorized to have a major organ removed than get approval to start taking a super drug such as this! Does that seem completely backwards to anyone else? 

So here I am, ready to do the thing I've tried so hard to avoid for so many years.  Its not the end of the world though. If we only did things we KNEW were safe, we would never drive a car, never leave our house, never live life! We aren't supposed to live life in the “what if” zone. That would pretty much be a paralyzing way to live.  

For example, check out The Lonely Island's hillarious video, "YOLO" - bahaha!

http://www.youtube.com/watch?v=z5Otla5157c

Yes, this drug can seem overwhelming, but I realize it can also help me. Prayers are welcome that this medicine will help, not hinder; that it will heal, not harm.

There are no promises with these types of

 dilemmas, but there is a loving God who promises to

 walk with me through it all.

Breaking The Vicious Cycle

ANOTHER MIRACLE DIET?

In my search for healing, I've tried so many of those “miracle diets” out there. Just to name a few, I've tried gluten free diet (multiple times), low sugar diets, no sugar diets and The Makers Diet... Time after time, nothing has worked to turn my health around. Yes, I may have found some minor relief, but nothing to take this dreaded curse away. Granted, there are people out there who have had success on special diets and managed to flip failing health around. Hooray for those people! (I only wish I was one of them as well!)

BREAKING THE VICIOUS CYCLE

Throughout the past couple years, I've had many people tell me I need to read a particular book- “Breaking The Vicious Cycle”. 

Well I finally read this book, and I think a year too late! The theory behind the diet makes sense to me. The author basically explains how certain people (like me) can't digest complex carbohydrates like other people can. Interestingly enough, these are often the people who have been found to have IBD, Colitis and Crohn's Disease. (This explains why these people often find relief when they cut out gluten/breads/pastas, carbs out of their diet.) Consequently when these foods that can't be digested continue to be eaten, damage is done to the intestines. Not only are the nutrients not absorbed, but these complex foods wreak havoc on the bowels as they pass through. Sometimes the damage is not felt at all, but that doesn't mean it isn't there. Other times people experience painful symptoms.

SPECIFIC CARBOHYDRATE DIET

The diet in this book is called The Specific Carbohydrate Diet. The name may seem a little misleading because the typical carbohydrates that we think of are not the ones allowed. No carbs besides natural ones found in fruit and veggies. Although the body has trouble digesting complex carbs, simple carbohydrates are easily absorbed into the guts. These would be the sugars found naturally in fruit and vegetables. This book suggests a completely radical change in diet. The goal is to stick strictly to this diet for 1-2 years, which will allow enough time for damaged guts to heal themselves. Since problem causing foods are not eaten during that time, things can heal up. Commitment to the diet cannot be half-hearted, or it won't work. Reason being- if you are continually ingesting harmful foods, damage will continue to be done and healing will be prolonged. After the initial period of 1-2 years, “illegal foods” can be slowly tried and added back into diet. 

Basically the theory is that if I eat these easily digested foods for long enough, my wounded, ulcered, guts will patch themselves up. In turn, I will eventually be able to eat foods that are more difficult to digest....

GUTLESS AND DIET

I've been on this Specific Carbohydrate Diet diet for about 6 weeks at this point. And boy, is it hard to stick to! No, I haven't fallen off or eaten any illegal foods. The trouble I'm running into though is the fact that since I don't have a colon, half the foods recommended don't work for me! For example, a lot of recipes call for “nut flour”, which is actually just raw almonds chopped up very finely in a blender. Now if you don't have a colon, even the most finely chopped nuts do not get broken down or digested. FACT. I knew this, but tried to make a few recipes anyways. They tasted wonderful, but I paid for it later. Here's what I learned about eating nuts- No matter how thoroughly a gutless person chews nuts, they come out like gravel. Yes, literally like passing gravel. NOT fun. Take into consideration that this gutless girl has no rectum either, and I must say that week long damage was done! Whew! Unfortunately 90% of the recipes in the diet use the notorious nut flour and boy, I know better than to try that again!

I've basically been living off chicken, turkey, cooked veggies (the few I'm not allergic to), home-made yogurt, honey, unflavored gelatin and cheese chips.  

My delicious home-made yogurt (processing in my yogurt maker)

Cheddar cheese chips cooking up on the grill!

Not an unhealthy way to live and the food is tasty. However, I do miss convenience. Honestly I don't  miss the sugar that much, but I do miss Wendy's drive thru and I do miss frozen boxed dinners.

KITCHEN CUFFS

The other issue I've been having with the diet is that since nothing processed can be eaten, I have to cook literally everything I eat. I feel chained to the kitchen. Preparing food, washing dishes 3 separate times per day, etc.... It really takes a toll on free time. That's why I've been so busy lately- pouring all my efforts into feeding this body. I have to say that eating gluten free was about a hundred times easier than this! There are so many gluten free products available these days. At least then I just had to focus on being careful with reading labels. Truthfully I think this diet has helped cut down on my symptoms, but its wearing me pretty thin. Sometimes it takes all my energy to cook a meal, when I'm already so energy-less. I'm giving it a shot though. No idea when whether I'll stick to it for 1-2 years. I am just living one day at a time and seeking direction for the future at the same time.

Struck Down But Not Destroyed

Lately I've been trying some new diet stuff that literally consumes ALL my free time. I've also been dealing with reality finally sinking in, and making some big decisions in the process.

I must admit that I could really use your prayers. Its a struggle for me to ask for help or even tell people how crummy I'm doing because I hate hate hate when everyone treats me all weird! The super concerned comments like, “Kelsie, how ARRRRE you?” get old. Don't get me wrong, I appreciate the concern. =) I really do feel the love, guys. I just want to also talk about other things. I want to be able to pretend I am just fine and dandy. Seem fair? Okay? Okay.

Reality has been sinking in finally and I am coming to terms with the fact that I have Crohn's Disease. *Sigh. Just because I lived with one chronic condition before doesn't make it any easier to accept the second time around. Its been 5 months since I was re-diagnosed and I'm finally grasping what that means. It means that I did not get rid of disease. It means I'm upset. It means that nobody knows anything. It means I'll have to pay premiums on health insurance for the rest of my life due to a "pre-existing condition". It means that I get discouraged from living with hidden pain, and frustrated that I still have no clue how the heck to just keep on going. Ugh, it wasn't supposed to be like this...

This is not the outcome I had anticipated. I was under the impression that if I had my colon removed, I would be disease-free and could move ON. I agreed to trade a major organ for new health. The surgery was supposed to fix me. I suffered with Colitis (ulcers in my large intestines) for 5 years. For whatever reason, I am one of the unlucky few who are in the tiny percentage of patients who originally had Colitis, and after surgery, the disease crossed over to Crohn's, which then attacks the small intestines instead. I never wanted this. Truth is, I'd trade just about anything to be rid of this stupid, ugly, incurable disease.

Yellowcard “Down On My Head” pretty much sums things up...

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

“As life flies by I'm not sure how I'm gonna do this all again, again. So line by line I write this down and I'm just trying to find the end, the end...”

I get so sick of fighting. Fighting to be healthy, fighting to live a normal life despite the fact that my stupid body insists on falling apart. Sick of fighting to avoid the super sketchy big drugs that I'm left with to treat this disease. Tired of fighting to have hope for this earthly body. I feel like I'm always giving my 110% effort and getting nothing in return. I give my body good foods, no junk, plenty of water, sleep, etc. I try all these crazy supposed healing diets, and in return my body bleeds in ways it should not, causes pain in ways that should not be possible and continually ambushes me from the inside out. This body is a serious pain in the butt!! Literally!

Fact is I am tired of wandering this desert. I'm 25, and boy, the rest of my life sure feels like its going to take forever. I mean, gosh, how am I seriously supposed to put up with however many God-given years of disease that this body has left in it?? Sometimes I think it would be easier to stop fighting. Whoa, that came out wrong! Let me clarify what I meant by “give up fighting”... Previously to me surgery meant defeat. It meant that I had lost the colon battle and given into last resorts. Not that I regret my surgeries, but in the past that was my mindset. Surgery meant I was out of options and left with an unwanted choice. Make sense? 

Recently I've been fighting against the option of taking the hard-core drugs that remain to treat Crohn's Disease. Some days I think it would be easier to give into them. Maybe it would help get my symptoms under control, and yet I know it would still not heal me. Yes, I've heard good things about Humira and Remicade, but I also know that years down the road, I may end up on a freaking liver transplant list because of these drugs! No doctor will tell you its a bad choice though because the people that have this happen are “SUCH a low percentage”. Well guess what? I am currently categorized into another “low percentage” group from Colitis to Crohn's after Colectomy. So why would I want to risk that again?? Can you see why I'm fighting like mad? I don't want to set my liver up for disaster! I want to fight until I cannot anymore. Which sucks, because its exhausting. Its exhausting living like this.

I apologize for all my ranting. Its not easy to be this vulnerable, but this is real life stuff and it sucks. Crohns Disease sucks. 

JJ Heller's song "In Your Hands" is a good to reminder that the Lord has me in His hands and He will not leave my side through all my battles. And just because it appears that I have unanswered prayers, that doesn't mean God isn't doing mighty things beyond my own understanding. 

 

https://www.youtube.com/watch?v=w-F6DGGF4Qs

“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. “ -2Corinthians 4:8-9