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

Pelvic Floor Dynfunction / Dyssnyergy

The tension in my pelvic floor muscles was causing me great pain, which was crippling to live with and difficult to explain to people. My best attempt = “My butt hurts.” Yes, I had suffered with an unknown butt pain ever since my -->Takedown surgery<--. Unbeknownst to me, I had literally become a tight ass.

INVISIBLE REAL PAIN
I struggled with this undiagnosed pain for over a year without clarity! Doctors ordered x-rays and CT scans to check for potential staples protruding from surgery, but nothing evident showed up. They ordered gut scopes (3 times to be exact) but nothing visible appeared. They prescribed medications for nerve pain, under the assumption that a nerve may have been nicked during one of my many surgeries. Narcotics didn't even phase the unexplained pain. 

After much frustration and lack of answers, I went to the magical place where answers can be found - Mayo Clinic. Thankfully the Mayo doctors  had a name for the invisible, non-imagined pain. After some "special testing" with the pelvic floor specialists there, it was concluded that pelvic floor dynfunction was my problemo.

THE BREAKDOWN: 

*Pelvic Floor = The muscles attached to the pelvic bone, which are mostly used for umm....toilet stuff.
*Dyssynergy = Not in synergy/not cooperating!

WHY ME?

So how did I end up with this sort of dyssynergy? I have a number of theories...

Hypothesis #1 = Colitis. Out of necessity, when you have diarrhea for like 6 years straight, you get pretty good at tightening those muscles.

Hypothesis #2 = Prior to my ileostomy reversal surgery, I was told by doctors that because my waste would be so loose, that I would have to "strongly hold back the urge"...I may have taken this to the extreme and severely over-tightened my poor muscles. 
Hypothesis #3 = Anal surgery - My rectum was surgically removed. I assume that slicing through those muscles could attribute to some ongoing issues...

NOT THE ONLY ONE
Apparently I'm not the only person with Pelvic Floor Dyssynergy. Others include women after childbirth, those who've had traumatic/painful pooping experiences, and people like me, who've had colorectal surgery. Unfortunately certain events attribute to a lack of harmony in the pelvic floor muscles, which become greatly confused. When a person has pelvic floor dysfunction, they tighten the muscles, instead of relaxing them. (Essentially it would be like making a tight fist with your hand all day. At the end of the day, those muscles would exhausted from needlessly clenching those muscles allllll daaaay loooong!)

 ....My next step was to enroll myself into an outpatient physical therapy program at Mayo Clinic with my hopes high.

BREATHE!

The first thing I had to learn was how to breathe properly, because breathing is very important to help the pelvic floor muscles relax. I had to UNlearn how adults breathe - with their stomach sucked in to look super skinny. I had to remember how I breathed as an infant - belly filling full of air and expanding outwards, then falling with exhaling. “Diaphragmatic breathing” is the technical term for this natural process. I figured out that I hardly ever breathe properly.

BIOFEEDBACK THERAPY
During the intense 2 week physical therapy program, I utilized a special type of technology called “biofeedback”. 

Hand-held equipment measures coordination between the pelvic floor muscles as they move. The feedback is displayed on a fancy instrument, which detects when the pelvic floor muscles tighten and loosen. 

Here's how it woks...

Electrodes are placed in contact with skin, and the results are visibly displayed on the equipment. (My gnome volunteered for the visual)

The visible results help patients recognize what they're physically doing, as well as re-learning proper coordination of  the pelvic floor muscles. 

The goal is to get to letter A (green) and be able to sustain it.  

"A" indicates that the muscles are in a relaxed state. 

Relaxed not meaning "I'm-going-to-pee/poo-my-pants". No worries folks, just regular 'ol relaxed throughout the day. (Most people do this automatically without realizing it.) Lucky ducks!!

The orange lights indicate the opposite, that the muscles are tight/unrelaxed. When I started the program, I couldn't even get the light below the middle line! (Not good)

 During biofeedback therapy, I met with my specialist 3 times per day, for 10 days. We worked with the equipment and her knowledge helped me understand how to use the abdominal and pelvic floor muscles properly. 

BUTT THERAPY EQUIPMENT
Biofeedback equipment measures movement by using either external electrode patches (as pictured above), or internal probes :/ or something far more evil - a rectal balloon. Yes world, I pooped a balloon. Actually, I failed, but I sure tried... Just one of many defining moments of my super awkward life...ya know, just hanging out with someone I met a few days prior, who just happened to be watching me try to pass a balloon... There are things you try to forget in life, things you swear you'll never repeat. Yet here I am sharing what I went through - because someone's gotta tell the world that not everyone who passes a balloon is involved in illegal things. Right? Ha ha??  I referred to the biofeedback program as “butt therapy”- rightly so. 

I'M BROKEN!

Overall the program was a difficult for me in many ways. At the end I was drained physically and mentally. It was very lonely at times, since I was at Mayo Clinic by myself for 2 full weeks. Hotel life, 925 miles away from home, just my gnome and I, bored outa our minds.

I struggled after every session because I felt SO BROKEN! Atop surgeries and chronic illness I've dealt with, now this odd dysfunction surfaced. The program definitely tested my patience. At the end of the program, I was discouraged to realize this would not be a" quick" fix. Its truly going to take time time to fully un-learn incorrect (breathing/muscle) habits and then re-learn the basics of daily life. 

GOALS OF BIOFEEDBACK
1. Mentally distinguish between different internal sensations (relaxed vs tight). 
2. Achieve the relaxed state in the pelvic floor throughout each day. (like everyone else does)
[Accomplishing these ideals will lessen tension and result in less butt pain.]
One additional benefit is what I refer to as...
3. "Life skills". I never thought the happiest part of any day would be effectively passing gas on the toilet. Seriously, I get sooo excited and want to yell, "WOO HOO! I FARTED!" Sometimes its the little things that count. Small successes are well worth all the effort. 

FAILING MY HOMEWORK
Since returning home, I found it difficult to continue my physical therapy on my own time (with my own biofeedback device that I purchased for $400). Between working 2 jobs + life, etc, I have a hard time making time to continue my physical therapy. I guess its like anything in life though...

We have to make time for the things that matter to us! As with all things in life, reaping any benefit requires effort and time.