Poop Pills

Usually when I tell someone "I ate crap", what I mean is I didn't quite land a jump on my snowboard. 

That is, until March 26, 2015...when I literally ate crap.

WHY EAT CRAP?
Within 6 months time I had 3 painful infections of ->C Diff,<-  which left me willing to try the unusual for a chance at being cured. Usually when a person gets a C Diff infection, it can be resolved with special hardcore antibiotics. Unfortunately sometimes 1. antibiotics stop working - 0r - 2. if a person takes immune suppressant medication (like me), the problem may return again, and again, and again. Let me remind you that C diff can be life threatening and it can't be killed. (Although the bacterial infection can be resolved, those nasty C diff spores will always reside in the intestines and flare up at random!) This destructive pattern in my life was wearing me thin. So I started to research alternative treatments for this recurring problem and learned of the mighty Poop Pill...

FMT
Fecal Microbiota Transplants have been done for years now. Essentially doctors extract bacteria from a healthy person's stool and transplant it into a person with serious gut problems. In the past, the only way to have this procedure done was through a colonoscopy (tube up the butt) or through an upper endoscopy (tube down the throat and into the stomach). As you can imagine, both were very uncomfortable procedures. The poop pill is a way less invasive route to deliver healthy microbia to the intestines. 

ONE PERSON'S CRAP IS ANOTHER PERSON'S TREASURE
Stool from a healthy donor is frozen into vegetable/gelatin based capsules. The frozen poop pills are later swallowed by a person in need. Researchers don't just take crap from anyone though; donors are screened over several weeks for any potential infectious diseases. If they pass the tests, their poo is frozen and kept in a lab until needed.  

Boston is neat, but I'm a left coast punk.

ONLY IN BOSTON
The poop pills were invented by smarty-pants researchers at Massachusetts General Hospital. Since the procedure isn't yet approved by the FDA, it can only be administered in Boston. Only certain patients are allowed access to the treatment and only under very specific circumstances. I met the criteria: multiple episodes of C diff infections, which didn't seem to be responding to antibiotics. Side note - I truly believe I developed an allergy to the antibiotics because the longer I was on them, the worse my symptoms and pain became.

BRAIN FREEZE!
30 poop pills are taken over a course of 2 days. (15 pills one day, 15 the next). In case you wondered: allow me to confirm - the pills are both tasteless and odorless. They are however, very, very COLD! The pills are frozen in liquid nitrogen, so they are frigid! These frosty pills made a brain-freeze from a 7Eleven slurpy seem like childsplay!

Bottoms up: 15 brownies into the hatch! 

EXPERIMENTAL
The poop pills have had a very high success rate of curing people with C Diff infections. Let me repeat that: this treatment can actually cure C diff. Yet the treatment is currently labeled as "experimental" because FDA approval takes many years and lots of study on effectiveness/risks. "Cure is likely, but not guaranteed." according to Massachusetts General researchers. While in Boston, I learned that I'm the first patient without a colon to be allowed to try the treatment. That labels me as an "experiment" as well, I guess! Outcome of this treatment for a person ->without a colon<- is unknown for a number of reasons. First of all, doctors weren't sure if the pills would even stay in my intestines long enough to work. (My food exits my body just 4-6 hours after I eat, compared to people with a colon who have about 24 hours.) There were also doubts that the pills would come out whole/undissolved. However, I did mostly dissolve the capsules, but - did the pills have enough time in my intestines to work??

TATER TOTS AT 3 AM
I received contact from the Boston doctor on the night before my treatment was to happen, which read, "Be sure not to eat anything tomorrow prior to treatment." They wanted me to have an empty stomach when taking the pills. In my mind, this would give the treatment a 0% success rate. Remember how I described how food exits me in 4-6 hours?? The pills would shoot straight through me if I took them on an empty stomach! After explaining my reasoning to the doctor, I was given the okay to eat a "light breakfast" BUT it had to be eaten several hours before I took the pills. Thus I woke up at 5 AM (which to my body was 3 AM because of the time zone change) and ate a boatload of tater tots. Why tots? Tater tots are the #1 food that slow my guts down. My theory was that they would give the pills a longer amount of time in my guts.

POOP PILGRIMS
My friend, Kerri, had a good description of what the poop pills are supposed to do: Imagine that the poop pills are pilgrims. They are settlers in a foreign land and their job is to recolonize. Basically the bacteria of the healthy stool is supposed to set up little "poop colonies" in the intestines. Oh, I sure hope the "poop pilgrims" survived and were able repopulate my guts. Only time will tell...

NO NEWS IS GOOD NEWS
I've been asked a number of times whether the treatment was successful or not. Answer: I don't know! To be determined! Basically, if I never get another C diff infection, then we can assume it worked! On the flip side, if I have any further occurrence of C diff infections, then we will assume that the experiment failed. Therefore, no news is good news! Researchers in Boston are monitoring me from afar. Umm, I send them a "sample" in the mail every few weeks for their lab research. Oh, and they're going to pay me for it. Benefits of being part of being a clinical study and whatnot.

Friend:  "I like your shoes, Kelsie."
Me: "Thanks, I sold my poop to buy them!" 

Can you imagine!? Hahahahaha!

Some may say that ingesting another human's feces is disgusting. Well, do you know what's even more disgusting? - DEATH! Dying in my 20's because of a stubborn infection is about the nastiest thing I can imagine. Perhaps I have more passion for life than pride for death. 

If you're interested in reading more about the Poop Pills, here's an article on the study done by Mass General in Boston. Pretty interesting science. (Keep in mind that this study was done with patients who had large intestines): http://www.npr.org/blogs/health/2014/10/11/355126926/frozen-poop-pills-fight-life-threatening-infections

VSL#3

WHAT'S VSL#3 USED FOR?

http://www.vsl3.com/

According to the labeling, VSL#3 should be consumed for the dietary management of medically diagnosed ulcerative colitis (UC), an ileal pouch (J pouch) or irritable bowel syndrome (IBS). 

NOT YOUR AVERAGE PROBIOTIC

I've taken numerous probiotics in my life, but VSL#3 is super special stuff! Each capsule contains approximately 112 billion beneficial bacteria. Not thousands, not millions, but BILLIONS! The powder packets contain 450 billion bacteria per packet. Oh yes, VSL#3 is WAY more potent than the average probiotics that people use. The manufacturer brags that it was carefully designed to offer "an unusual degree of potency". This isn't just a probiotic folks; its technically a medical food! For those with allergy concerns: VSL#3 capsules are gluten free and vegetable based.  

RECOLONIZATION!

VSL#3 helps restore a healthy balance of gut bacteria. It has an extraordinary combination of bacteria that will inhabit and secure the GI tract with lots and lots of good stuff. Essentially its task is to help tip the scale of gut flora back in the proper direction. 

Ideally there should be more good bacteria than bad in the intestines... otherwise we become prone to bacterial overgrowth, which can lead to all sorts of unpleasant issues! VSL#3 works to protect the GI tract from harmful material that try to sabotage the intestinal lining. VSL#3 will take a minimum of at least 1 week to begin taking occupancy in the gut. However, it can take these friendly bacteria about 1 month to truly recolonize the gut.  

A RADICAL CHANGE
As I've mentioned previously, I was assumed to have chronic "Pouchitis" after my final gastrointestinal surgery. (Pouchitis is inflammation in the J pouch). I could/should write an entire page about Pouchitis sometime, but for now I'll just say that it was literally a huge pain in the butt for 2 years of my life. Once I started taking VSL#3, that pain disappeared! This probiotic has been a life changer for me! I swear by this stuff, and I don't swear, so that's a big deal!

PRESCRIPTION?
Although the manufacturers state that VSL#3 "must be used under medical supervision", no prescription is necessary for the packets or the regular capsules.  The regular strength capsules that I take are technically OTC (over the counter). However, doctors can write a prescription for it, so that patients can submit to insurance and also be able to claim the medical expenses on taxes. VSL#3 isn't common enough to be found on drugstore shelves yet, so the pharmacy places a special order for it. Note: The manufacturer also offers a double strength version (VSL#3 DS) which does require a script from a doctor.

CONSUMPTION

The powder version can be mixed into food or a beverage, as long as it's not taken with hot food or drink. Heat can inactivate the live bacteria...Thou shall not mix VSL#3 into hot cocoa!! It also shouldn't be mixed into any carbonated drink. I mixed the powder into water or juice before I switched to taking the capsules. The powder form has a lemon cream flavor, which to me tasted like orange. Sprinkling the powder into applesauce is a great idea as well.

STORAGE:

The label on the box states that it should be refrigerated and specifically kept between 36°-46°F. Manufacturers warn that, "If it is left at room temperature for long periods of time or exposed to excessive heat, the number of beneficial bacteria in VSL#3 can become greatly reduced". Duh - if you prefer to get the most benefit from VSL#3, keep those bacteria alive in the fridge!

TRAVELING WITH REFRIGERATED MEDS

When I travel, VSL#3 takes transit in this adorable/ridiculous pouch along with a cold ice pack. I searched everywhere looking for a small sized soft cooler before I stumbled upon this guy!

Yes, I'm a total nerd, and No, I'm not ashamed to
sport this dude on my backpack in an airport.

I recently took a few flights across the U.S. and I was concerned about getting my precious capsules and an ice pack through airport security. However, after some research (Thanks, Jim!), I found out that keeping medications with me could be an easy task... 

Step 1: 
Ice pack must be frozen solid. According to the FAA's website regulations, "Accessories required to keep medically necessary items cool are treated as liquids unless they are frozen solid at the check point." In other words, keep the ice pack in the freezer until the last possible moment before leaving for the airport. Clearly the guidelines have allowance for it.

Step 2: 
Declare to the screening officer that you possess a "medically necessary refrigerated medication" in your carry on, before they screen your belongings. The honesty policy makes sure you don't seem like you're trying to hide anything from them.

I know that sometimes the TSA has a reputation of being unreasonable with travelers. In which case, I invented:
Step 3 (optional):

Have in your possession a doctor's note stating the need to keep said refrigerated medication with you at all times. For example, "To whom it may concern, Due to a chronic medical condition, Kelsie must keep her refrigerated medications with her at all times. Thanks for your understanding. Signed, her doctor".  BAM. The idea behind the letter was a fail-safe, just in case my precious pills were treated unfairly or with any suspicion. 

I've flown 3 round trip flights with my refrigerated medication and haven't experienced any issues. Yay!

SIDE EFFECT:

The only unpleasant side effect (initially) is bloating. I couldn't believe how gassy it made me at first! It caused SO much discomfort at the beginning that I wanted to stop taking it altogether! I waited it out for a couple weeks and my body eventually adjusted to it. Supposedly this reaction is due to a drastic change in gut flora.

WILL IT WORK ALONGSIDE ANTIBIOTICS?

This question lacks a clear answer since theoretically antibiotics kill off the majority of both the bad and good bacteria. Its difficult to know how much good bacteria survive the annihilation. The suggested response is that as long as VSL is consumed in between antibiotic doses, it will have the best chance of working. For example, if antibiotics are taken every 12 hours, VSL should be taken 6 hours between doses. While I recently was on antibiotics I continued taking my probiotics. I'd decided to take my chances investing in something good, as opposed to solely injesting destructive antibiotics. Most doctors generally suggest taking PRObiotics while on ANTIbiotics anyhow.

I'd recommend VSL#3 to those who suffer with IBD, which is about 1.5 million people just in the U.S.A. (definitely ask your doc about it). My "chronic pouchitis" problems were helped immensely by VSL#3. I wish someone had told me about this stuff while I still had my large intestines!

The In's and Out's

Over the past 8 years there have been many things that I've longed to diverge in. There were some opportunities that I had to watch pass me by while I sat on the sidelines. On the occasions that I felt decent enough to partake in activities, those times often felt few and far between. Yet my God knew just what I needed, and at the times when I needed it the most, He breathed a breath of fresh life into me.

BOARDIN'

One activity that I missed out on for a couple years was snowboarding. I'm not a professional by any means, but I've been boarding for over 12 years and I must say: nothing else makes me feel quite so free as when I'm carving down the mountains. During the year of my surgeries, my sliced up abs didn't permit any snowboarding. Another year I was forbidden to snowboard when I was taking Coumaden (blood thinner medication). Doctors cautioned me that if I got a concussion, my brain might bleed to death. I suppose that's fair reasoning.

Every winter season now that I get to roll in the snow while strapped to a piece of wood is pure, white JOY.

ROCKIN'
Another thing I missed out on at times was going to punk rock shows. Music has always been a huge part me. There's something genuine about rocking out with a favorite band when they're 2 feet away, singing lyrics I relate to. 

Oh yes, in my life I've attended a lot of concerts where I nearly pooped my pants...cuz when you have IBD, Colitis, or Crohns, there comes a point where you say, "Body, you're falling apart, but that's not going to stop me!". 

For at least 1 full year after my final surgery, I got THE worst side ache if I jumped up and down or even simply jogged! I felt so pathetic! Even after my stitches were all healed up, my abs were total weak sauce! Nowadays, its such a privilege being able to bounce around and even mosh again.

ALAS NOT ALL THINGS LAST...
Oh yes, there are a number of things that I'm thrilled to be able to enjoy again. Yet at the same time, life is oh so different since everything transpired. While I've regained some activities that were put temporarily on hold, I've also lost other things, possibly indefinitely. For example: HIKING...

It would probably be a realistic assumption to say that I might never go hiking again. Why, you may ask? Ever since my proctectomy (removal of my rectum), my external butt skin is way more irritable and I don't enjoy long distance walking! To say the least, there's an annoying chaffing that takes place, which drives me absolutely crazy! Partially to blame is the fact that without a colon, food is more acidic, which causes burning issues when food exits. Maybe things will improve in a few years, but if not, then I guess I'm cool with being a lazy bum cuz of my dumb bum.

Favorite boy and I hiking up to L&C caverns

I did however, visit Lewis and Clark Caverns 1 year after my >Takedown surgery<. I conquered the steep climb up the mountain trail that lead to the entrance. I overcame the multiple mile hike inside the underground caverns. With that proof under my belt, I'm not saying that I won't ever hike. Let's just say that it has moved down to the bottom of my "to-do" list (along with running a marathon). 

Well hello, I'm underground!

P.S. -->If you're ever near Butte, MT: Lewis and Clark Caverns is probably the most magical place you'll ever encounter.  
P.S.S.-->If you're claustrophobic, don't bother because you won't be able to handle the awesomeness.
BYE BYE, JOB

Another thing I have chosen to say "goodbye" to is, err was, my occupation.

I waited tables for 10 years and truly enjoyed it. And I'm not saying that just because I made bank on tips! I really enjoyed serving people and getting to interact with the customers. So why did I give up the gig? To be vague about it, it just wasn't as easy after my surgeries. No, I'm not referring to carrying heavy trays or anything like that. I could perform the job just fine, but overall, the demands just took a toll on my body. In case you didn't know, waiting tables on a busy afternoon can be quite a work out, which requires staying hydrated. Now remember that without large intestines, its not as easy to stay hydrated (since one of the colon's main jobs was absorbing water). Without my colon, I can't just chug a gallon of water and magically be hydrated anymore! J-pouches don't work like that. Keeping my job was taking me an entire day to re-hydrate after a shift. In the end, I resolved that doing what I loved wasn't worth it anymore. Sigh*

MXPX - Stay On Your Feet

https://www.youtube.com/watch?v=eHfFGSBlO3c

Clearly life will be full of changes. It will contain both struggles and disappointments, victories and rejoicing. It will be full of up's and down's, as well as in's and out's. For me there will likely be flare up's with disease in the coming years. Just 4 days ago my pain level was 11/10 due to a recurrent infection in my guts. I also have lame-o Crohn's disease, and that's not going to change (unless some genius figures out a cure). But in spite of this knowledge, I've determined to live my life out as best I can. God willing I will ride more snow, rock more shows and keep pressing on.

Relief, Finally

Instead of the latest medical bombardment in my life, I have good news: Relief has finally come! Praise Jesus!

There's basically are a lot of weird and crappy circumstances that I went through that landed me in the place I am now...Let's rewind...
MY ONGOING BATTLE
As previously explained, I suffered from Ulcerative Colitis for 6 years of my teenage and young adult life. During this time I trialed endless medications to control the painful and ongoing symptoms and was hospitalized often. Eventually I became desperate enough to move forward with 3 major abdominal surgeries to remove the diseased part of my intestines. Unfortunately I was re-diagnosed with Crohns Disease only 4 months after my final surgery, which was completely devastating. This meant that the disease which for 6 years was strictly confined to my large intestines had now progressed to my small intestines. Alas, the battle was not over...it had only just begun....

WHAT A PAIN IN THE BUTT
After the Crohns diagnosis, I opted for a medication called Humira. Ironically I had previously avoided this drug with all of my being...so much so that I actually chose to have 6 feet of my guts amputated over it. Oh well, the injections fixed up the ulcers. Yet after the Crohns symptoms ceased, I dealt with an unknown BUTT pain for the next 2 1/2 years. The general diagnosis doctors came up with was "post surgical pain", and the specific diagnosis was assumed to be "chronic pouchitis". Doctors couldn't figure out why I was hurting so badly. I soldiered on with life, by the grace of the Lord, moment by moment, day by day (and had an emotional breakdown at least once per week).

ENCOUNTERS WITH A DEADLY INFECTION
I was perpetually taking antibiotics during the years after surgery, which for some odd reason reduced the pain. After several years on antibiotics, they became less effective and the pain got worse. An even worse problem developed when I stopped taking them: C-diff.  C-diff can be life-threatening. (Side note- the fact that I even got this infection was extremely odd because a person without a colon technically shouldn't be able to get it!) I guess I'm just special? I got C-diff not once, but twice!...which means I'm twice as special?? The infection(s) cleared up after taking a special medication. Yet the mysterious butt pain returned again. UGH.

CAUGHT IN A CATCH 22
The internal butt pain was debilitating. I could hardly make it through a day at work! I needed to buy myself some time to come up with a solution, so I decided to take Prednisone (oral steroids) for a month. This gave me temporary relief, but I was freaking out about the fact that I was caught in a catch 22: If I took antibiotics, my butt pain could be lessened...but the antibiotics would likely cause recurring C-diff infections, which could kill me. I felt like I had to choose between 1. Live in pain or 2. Die in comfort. After my recent experences with C-diff, I decided I did NOT want to go back to long-term antibiotic therapy again.

So against my doctor's advice, I chose to ditch the antibiotics and take a gamble on a new path.

VSL#3 PROBIOTIC THERAPY
I started taking a special super probiotic for colon-less people during that time called VSL#3. Why is it called VSL#3? I don't know. I often wonder what happened to VSL#1 and 2. Haha. In the past I'd taken VSL#3, but only for short periods of time. I'd read in online forums that probiotics take several weeks to change gut flora for the better. This logic made sense to me because I knew I'd wiped out all beneficial bacteria in my gut from years of antibiotics. Thus I decided to give VSL#3 another try. Four weeks later, it was also time to come off the steroids. I was so nervous, but astonishingly the mysterious butt pain didn't return! I kept expecting pain to come back and knock me off my feet again, but it didn't! Long story short: People with gut issues ought to take these pills! I'd bet money they won't be any worse off for it. After several months of taking VSL#3, I feel like a different person! I'm not cringing in pain like I used to. WHAT!! For the first time in a very long time I can say my health is relatively stable. This has been my prayer for almost 8 years! I am never going to stop taking VSL#3.

NERVOUS AND THANKFUL
Truthfully I am fearful of the next giant medical downfall in my life. If living on this roller coaster has taught me anything, its that after I reach the top of the ride, a downhill plummet is coming up fast. I've essentially been trained by my circumstances to be on my guard when anything good begins to happen. And I HATE that. Yet I am so thankful each day that I am able to live without overwhelming pain. Its amazing to be able to do "boring" stuff like go to work! Let me be clear, I do still have other minor J-pouch issues, but those issues are manageable in comparison. All the crap I've been through has landed me in a place of gratefulness towards God for His grace.

Children 18:3 "Holding On"

https://www.youtube.com/watch?v=_xWuT2Ue1x8

Oh the times I've listened to this song, tears in my eyes, singing along...

"Holding on, its gonna take some time, But I will love you through the horror and lies, Arm in arm through the darkest night, I will love you and 

eternity's mine."

My friends, when life gets flipped upside down 27,000 times, leaving you dizzy and confused, HOLD ON. When nothing makes sense and nobody has the answers, when it seems there's no way out, TAKE HEART. The Lord is faithful, He is good, He will take our nightmares and work them out for a greater purpose.

C-Diff

C-difficile = my latest uphill battle. 

I've heard this term numerous times in my life, but until lately I knew very little about it. Thank God I was able to be oblivious for so long, because C-diff is nasty! I've recently become acquainted with this beastly infection, twice. Ugh. 

WHAT IS CLOSTRIDIUM DIFFICILE?

*A gut/stool infection with flu like symptoms

*Imbalance in the gut flora (more bad bacteria than good)

*Attack on the lining of the intestines

*Painful, ongoing diarrhea and stomach cramps

*Deadly if left untreated and infection spreads in the body. It can actually perforate the bowel (make a hole in your intestine). 

*Contagious through stool (wash your hands after you poo, people!!!)

*Although the bacterial cells can be killed off internally with antibiotics, the C-diff spores can't. The spores can lay dormant for years until it freaks out again. Not cool!

INFECTED GUT

I must admit its crazy frustrating to end up with another stupid health thing that I can't get rid of!! When I started having symptoms, I thought maybe I was having a flare up of Crohns Disease. So my GI doctor had me give a stool sample to test for C-diff. If you have Colitis or Crohns, giving your poo to the lab becomes a regular occurrence. By the way it never becomes less awkward to carry "the bag of shame" through a health clinic. Ha. I've been tested for C-Diff roughly a million times over the past 8 years. Yet this was the first time that results came back positive for the infection. 

ANTIBIOTIC CONSEQUENCES
How did I end up with C-diff? Its a known fact that overuse of antibiotics can cause all the good bacteria in the gut to be wiped out, or at the very least, become outnumbered by bad bacteria. Having nothing but bad bacteria residing in the guts is not a good thing. C-diff can run rampant in these environments. I've been on antibiotics for 2+ years now, taking Flagyl and Cipro to help with chronic pouchitis pain. (Pouchitis is inflammation in the J-pouch). Lately I felt that those medications stopped being effective, thus I stopped taking them. Well C-diff typically likes to strike shortly after stopping antibiotic use...and strike it did - FULL FORCE! I became so dehydrated and my body wasn't getting any benefit from food. On top of that, I had THE most horrible pain in my J-pouch. I laid on my couch for days, afraid to eat and afraid to move. 

TREATMENT

When diagnosis is confirmed by biopsy or stool sample, its pretty dang important to treat this infection right away! Since I was in so much pain, I was prescribed a high dose of a gut-specific antibiotic called Vancomycin. (Yes, I took an antibiotic to solve a problem that was caused by antibiotics.) Here's me with my 2 week load of drugs.---> It took 5 days before I felt any benefit from Vanco, but eventually I got relief. Praise the Lord! 

Another important step to battling C-diff is taking probiotics to help replenish the "good" gut bacteria in the intestinal tract. VSL#3 is a probiotic that is specifically for J-pouches and people with IBD. It can be taken in powder form (mixed with food/drink) or it can be taken in a capsule. I used the powder in the past and experienced some less than favorable side effects (mucho gas), so I take the capsules now and no prob, Bob! VSL#3 is an OTC probiotic which requires refrigeration, so a pharmacy must place a special order for it.

RECURRENCE

After I finished my 2 week course of Vancomycin, I felt okay for a week...Then my symptoms came back...while I was out of state on a vacation. Grr! The second time I knew what was happening though, so I called my doctor and got another set of drugs on the way. Research states that about 20% of people with C-Diff will relapse within 1 month. I am one of those people. I am very nervous about future encounters with C-Diff. I can handle diarrhea, but the pain that C-Diff causes on a J-pouch will about make a person pass out!! Once C-Diff has occurred twice, chances of getting it again increases to roughly 60%. I'm probably even more likely to have recurrence of C-Diff because I take Humira. I take Humira to control Crohns Disease, but it super weakens my immune system, making me more susceptible to infections. 

Oh yes, this could become a vicious cycle in my life. Let's pray it does not. 

Where I've been versus where I am
Two places the same, history repeats itself again
One step forward, two steps back
Am I gaining ground or slowly losing track?

     I strive towards the goal ahead,
     The past fresh in my mind
     Hope remains in what's unseen
     Trying not to lose this grasp of mine

The ground is slowly caving in,
Crashing underneath my feet
The mountains crumble and collapse, 
They fall and try to bury me

     Oh my God, I'm holding onto You, 
     but this pain is holding onto me
     I await the day You call me home
     When forever I'll be set free

Ulcerative Colitis

My summary of sabotage from the inside out...

WHAT IS COLITIS?

• "Itis" = inflammation of an organ - Thus inflammation of the colon. 
• Long term disease in a portion of the digestive tract. 
• Auto-immune disorder. (The immune system is confused and works in over-drive, mistakenly attacking itself.)
• Ulcers in the colon. Open wounds in the large intestines. These sores fester and bleed, and yes, they hurt.

WHAT ITS LIKE TO LIVE WITH UC?
Stressful...Uncertain...Painful...Lonesome...Frightening...Exhausting...

Its living on a roller coaster.

I rode the Colitis roller coaster for 6 years. Ages 18-24. My college years were not a typical student's memories. Living with this disease seems unending and can be truly discouraging. UC is a chronic condition, meaning it does NOT go away. Its stuck to you, for life.

UNRELENTING MISERY 12-15-09

My body feels battered and bruised,

Tore in unrelenting pain

Day and night it cries for death, 

Still I waste away

Oh, this unrelenting misery,

Such pain inside my soul

Can I push through another day,

Will I make it if I go?

The road ahead is winding,

Curving in and out of sight,

Trials and traps await me

In my long enduring fight 

Right now I'm scared, frustrated, insecure

I don't know if I can take this anymore

I'm frightened from all the struggles at hand

But I know You're the only One who understands

"FLARE UP"
Colitis has it's ups and downs. At times the condition can be in "remission", with no problems for a season of time. I usually had a couple months of remission each year, always in the summertime. I'm pretty convinced it has something to do with Vitamin D from the sun, seriously. However, at a moment's notice, inflammation can return, causing more ulcers, causing more bleeding and discomfort. When a flare occurs, life goes downhill rapidly. In a few short weeks, things can change drastically, possibly requiring hospitalization. 

TOILETS OF DISMAY
A flare up begins with a small amount of blood in the stool. This concern remains evident for several weeks, maybe even months. Over time, the amount of blood increases, until eventually there's more blood than stool. Let me say, no matter how many times you look in the toilet - shocked - to find your own bright red blood, it becomes no less terrifying. Checking the toilet after you go becomes the norm. Its no surprise that anemia can become an issue for people with U.C.

THE DOWNHILL SLOPE

Once a flare up has begun, painful stomach cramping persists. Similar to the churning stomach pain experienced before diarrhea...?... yeah cramping sort of like that?... yet 1,000 times worse! Yet instead of pooping liquid waste like a normal person with a throbbing tummy would, blood results from the bleeding ulcers. Sooner or later the pain gets SO bad that a decision has to be made to go the emergency room. Since the ER doctors can't "assume" or "diagnose" a condition, they put you through the ringer of stupid, pointless tests...Stuff like tricking you into taking a pregnancy test when you're a virgin...and great awkwardness from being forced to poop and pee into a commode...and making you wait until morning and then releasing you with nothing more than a couple bags of IV fluid in your veins.

HUNGRY, SKINNY HIPPO

Digestion becomes difficult as the ulcers fester and bleed. Food goes straight through the guts and out the "door" before nutrients can be absorbed. Hunger during a flare is a problem, since eating comes with fear. Consuming food can initiate painful stomach cramps, and bring more agony. When it gets really bad, even plain white rice becomes the enemy. Without food, one grows weak, grumpy, and exhausted. A person becomes a melted zombie, barely somehow alive. 

SECRET PAIN
Living with this condition means living in secret pain. I did everything in my power to carry on like an average person, trying to do what I wanted when I wanted...yet my disease dictated my comings and goings. Living with Colitis is daydreaming of the normalcy that's been stolen away.

PLANS?
You can hardly plan anything because this disease is so unpredictable. Planning a trip? HA! A flare up might wreak havoc on your well thought out vacation. Its nice to hope, but this ugly disease more than often robs opportunities.

A LONELY BATTLE
Besides the physical wear and tear a person deals with, Colitis can have detrimental social effects too. It can isolate a person to suffer alone. I literally spent hours locked behind bathroom doors, waiting out waves of abdominal cramps, holding my face into my t-shirt to muffle the groans. As much as friends and family try to offer their support, they can't be there when you're doubled over on the toilet with gut wrenching stomach cramps. They can't help your body absorb food. Sure, they try to help by including you in events, but there are times that sitting in a restaurant, watching your loved ones chow down when you're wasting away is taunting. Best intentions aren't always the best medicine. Sometimes its easier to sit alone and be hungry, than smell delicious aromas and feel insulted and depressed. 

"Be merciful to me, Lord, for I am faint; O Lord, heal me, for my bones are in agony. My soul is in anguish. How long, O Lord, how long?" -Psalm 6:2

CAUSES
No one is 100% sure what causes Ulcerative Colitis, but there are a number of common theories...

• Genetic - Passed down through the family tree...That's reason enough for me not to continue my biological line. Passing on this awful curse to any poor child would be inhumane. The way I see it, there are plenty of kiddos out there already in need of a loving home. I personally don't want to chance passing on what I've dealt with to anyone else. Period.
• Diet - What you eat...There's quite a  bit of research behind the physical affects of what people eat. I agree that there is truth behind this theory, although I'm not entirely convinced that food alone can create this evil monster all by itself.
• Stress - Triggers that go deep...Stress can have an immense impact on the immune system, numerous studies point out. I generally wouldn't describe myself as a panic-manic, but I believe we all live with hidden stress that we may not realize. Truth be told, stress can weigh SO heavily on these bodies.

WORRY, WORRY, WORRY
For a condition that is caused by stress, it sure causes enough stress of its own! "When will the next flare up be?" How long will I suffer with this condition? What if I can't find a bathroom? How long will I be in the hospital this time? Will I find a medication that will get rid of my symptoms? Will I get to keep my colon? When will I be able to eat again? Will I live without pain ever again??"

MOUNTAIN DEW AND PILLS
So how did I end up with Colitis? No one in my family has any similar issues, so that rules out the genetic factor. If I had to guess, I'd say that the answer is related to my poor habits as a youngster....As a pre-teen and teenager, I drank A LOT of Mountain Dew. I probably drank at least 6 cans of Dew every single day for like 10 years straight. I also took A LOT of ibuprofen (I had very, very painful menstrual cramps). I would take 16 Ibuprofen per day for 5 days straight each month, and usually on an empty stomach. Whoops! I'm not very good at math, but I'm pretty sure that 80 pills in under a week is WAY beyond the maximum recommended dosage! Its a known fact that Ibuprofen in excessive amounts can lead to ulcers. Doi! 

TREATMENT 
The only way to fully get rid of Colitis it to have your colon extracted from your body. No colon = no colitis. Although there's currently no cure (besides surgery), there are several medications available to help treat U.C. The goal is find a medicine that keeps symptoms in check. I tried quite a few medications in my struggle with Colitis. Some made me worse, some worked for a while until my body rejected the medication, and some did nothing at all. Many of the treatments I took were "immunomodulators" (big word for a drug that suppresses the immune system).

Medicines that I tried in my search for relief:

1. Asacol - This actually made my symptoms worse. 
2. Azathorprine (AKA Imuran) - This one worked great for 6 months, until my body decided to become allergic to it! I became extremely nauseous, vomited, and was dizzy for days straight. Just to sure it was truly the medicine making me sick, I waited several days and took another dose...the result...miserably SICK for another couple days. This was a bummer because it can took about 3 months before it started working!
3. Mercaptopur AKA MP6 - This one seemed to help a bit, but not enough to keep me in long term remission. 
4. Allopurinol - Taken as a combination with MP6. (Supposedly Allopurinol improves the performance of MP6.)
5. Canasa - This was only effective when my disease was limited to "Proctitis", which only affects the lower third of the large intestines. 
6. Prednisone - Commonly used during and after a flare up (to suppress gut inflammation). Check out the blog I wrote about this drug-->'Roid Rage. 

There are a few more medications available, but couldn't take them because of a Sulfa allergy. 

One final drug class is the "Biologics", which includes Humira, Remicade and Cimzia. These drugs are reserved for when the disease doesn't get better; they're the back up plan for when all other medicines fail. These medications target specific inflammatory pathways and stop inflammation from happening in the guts. Works for some people, but unfortunately not for everyone. I was terrified of these medications and refused to try them, which eventually only left me the option of surgery when life spiraled out of control for the last time. If you want to read about Humira<--check out what I have to say about my experience with it...(Ironically, I now take this medication, since my RE-diagnosis of Crohn's).

My experience with Colitis impacted me greatly. It bombarded 5 years of my life without invitation. It was completely terrifying to be in a constant battle, when the enemy was my own body fighting against me. I would never have chosen to have this dealt to me. Nobody would. Yet it has also melded me into a person of empathy and perseverance. The Creator of the universe gave me strength to keep on living while I felt so condemned by this yucky condition. 

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." -Psalm 73:26

Puzzle Tree

8-20-2013

A tree made of puzzle pieces,
but the pieces don't fit,
They're mashed in together,
Hammered out until they gave in

What a tactful mess this is...
A tree with roots in the desert,
Streams of water flowing underneath,
Hidden life support, energy

Oh the promise of life,
Of existence beyond this
I cling to it, my dear hope,
Drinking up your endlessness

The missing pieces in this puzzle
Represent my painful struggle
Battles lost, lessons won
The uncountable miracles You've done