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