Monday, February 11, 2013

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!

Wednesday, February 6, 2013

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"
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.