Thursday, July 25, 2013

Medical "Vacation"

How quickly health can go downhill. I felt great for an entire month! All my pain was practically gone... Then out of the blue, a raging storm re-appeared and invaded my bright, sunny days...The pain returned, and seemingly with vengeance. Ugh. In little under a week, I went from feeling on top of the world to laying on my couch, afraid to move and afraid to eat. I would yelp as the pain came and went in angry waves. Miserable, again. 

FOOD=ENERGY, FOOD=PAIN
Fact= the body needs food and nutrients to survive. But what does a person to do when they're terrified to eat? When the necessities of life lead to awful pain...When eating plain “safe” food, like rice, is hazardous and destructive...During times like these a person eats just enough to get by, and is exhausted from lack of energy. Sleep doesn't come easy, as the stomach growls and whines for nourishment. When food equals inexplicable pain, that's how it goes! I've been to this frustrating place before. My relationship with food has been ruined by circumstances more times than I can count. 

POUCHITIS?
One thing I was curious about was “Pouchitis”. (inflammation of the J-pouch) Could my J-pouch have some sort of infection? Pouchitis is usually resolved with a couple weeks of antibiotic treatment. Because I was so desperate for relief, I  asked my GI doctor to prescribe Cipro. After taking just 2 doses of this medication, my butt pain lessened. The pain didn't resolve all together, but at least I wasn't holding back tears constantly! Yet things still didn't make sense, because I didn't have any Pouchitis symptoms. I realized that once I stopped taking the medicine, the underlying pain would return. With no understanding of what the root of the problem was, I was at a loss and feeling oh so lost.

VACATION'S ALL I EVER WANTED
After consulting with my local doctors at home, they had run out of suggestions for me. No one was able to suggest any causes of the pain. I seemed to have hit a brick wall. OW. 

<Side note- Do you know how awkward it is to have to tell your boss you can't come in because your butt hurts too badly?...hahaha, kinda funny, right?? ...because to a boss, "personal reasons" is never good enough.> 

Anywho, I had an upcoming vacation to Minnesota and conveniently, the Mayo Clinic happens to be in Minnesota. The obvious thing to do was to seek out answers from the conglomeration of knowledge at Mayo Clinic. Thus, my long awaited vacation turned into a mostly medical trip. *Sigh* All those dollars saved up for fun adventures were by default converted into lodging in Rochester. It was totally necessary though; I had to find answers because I could not go on like this. At least I got to spend time with my dinosaur love at my usual hotel in Rochester. He had really missed me, as you can see from photo below!... 

MANDATORY SCOPES
I requested a consultation with my surgeon at Mayo. However, before I could meet with him, I was required to complete a few procedures. I had to have two different types of scopes done- 1. Flexible sigmoidoscopy and 2. Pouchoscopy. Both highly uncomfortable tests that I'd prefer not to endure. The doctor that did my scopes asked me if I'd done this procedure before. My response-"Good Sir, this is my eleventh."

Me (just awoke from drugs)- "Jim, take my picture!"
This was the result....(I fell asleep instantly.) 
...moments later....
Me-"Jim, what are you doing?"
Jim- "I'm taking your picture, like you asked me to."
Me- "I asked you to take my picture??"
haha, oh drugs....
Rockstar?
"E.T. phone H-O-M-E"
Hey, at least Mayo Clinic gives out free DELICIOUS cookies after scopes! Mmm!

ANSWERS, FINALLY!
Anywho, the scopes could help the docs rule out any obvious problems with my J-pouch. I assumed they wouldn't be able to find anything though, because I'd just completed the same tests at Billings Clinic. I knew that the cause of my pain was well hidden from obvious logic. Still, I hoped they might have some suggestions for me. 

After days of pre-requisites at Mayo Clinic, I finally got to meet with my surgeon and GI doc. I explained in detail the mysterious pain that had been haunting me for over a year. I was dying to know if they had encountered anything similar with any other patients. Thankfully, they had some ideas. Thus I was referred to a different department in the building... To a specific section in the physical therapy department. Floor 14...(which by the way is actually FLOOR 13; but don't tell anyone with triskaidekaphobia...)

PELVIC FLOOR DYSFUNCTION
After more very “special testing” in the biofeedback therapy department, (let's just say it involved probes) they were able to put a name to my odd pain: Pelvic Floor Dysfunction. Long story short: my butt muscles are not in synergy with each other. The pelvic floor muscles (used for holding back and also releasing waste) are all confused. Instead of being in a relaxed and normal state most of the time, my muscles are tight and overworked...causing pain. Makes sense to me, I suppose.

NOW WHAT?
I am so relieved to have answers finally, but what's treatment options? Mayo Clinic has a program designed especially for helping people with the pelvic floor dysfunction. Its a 2 week program with very intense “re-training” of muscles. The catch?...It costs $9,000 and insurance doesn't cover any of it.
Yikes! Regardless, this September I will head back to Mayo in hopes of ridding myself of this stupid pain once and for all! Until that time, I shall stay well acquainted with Cipro, my new antibiotic friend that magically helps with pain. 

I can't help but chuckle to myself after reflecting upon my life. “Butt therapy". Of course, by default my life must be this awkwardly hilarious.