You Have a What?

An ostomy. An Ileostomy, to be exact. Those of you in the medical community are going “Really? Wow that’s so interesting/cool!” I assure you, it is not. And, fair warning, if you ever say something like that to my face I will probably slap you. Nothing personal.

All you “normal” people are still confused so let me fill you in. The scientific definition of an ostomy is: An artificial opening in an organ of the body, created during an operation. Basically it’s what happens when your body’s pluming doesn’t work right.

Let’s back up a few months, to September 3rd 2014, which started as a normal day- Doctor appointment, showing houses, running errands, baking cookies, walking the dog— all while having pretty bad pain in my intestines. Nothing new really. Nearly nine years of Crohn’s disease makes one learn not to let pain stand in their way of getting out of bed every morning.  It wasn’t until I sat down to eat dinner when I started to worry. The pain was bad—bowel obstruction bad. Ugh. Another one. The pain from a bowel obstruction is best described as ‘utterly agonizing’. When your intestines swell closed and create a blockage there is very little you can do beside using your most creative swear words, vomiting repeatedly, and then going to the ER.

But alas, on this night it was not just an obstruction- it was a perforation. A rupture, or hole if you will, in my intestinal wall. And do you know what happens when you have hole in your intestines? You DIE. The juices from your gut spill into your body and poison you. But if you have a good surgeon on hand you can usually escape death. Luckily I did. So here’s what happen: The surgeon cut me open, found the perforation and cut that section of intestine out. It had been where the small intestine meets the large. The Ileum, as it’s called. So he gets rid of the bad part right, and normally he would just put the two ends back together, sew me up and bam! Good as new. But, lo and behold, my large intestine was far too diseased to have anything reattached to it; it would have merely fallen apart. So the only choice was to staple the end of the large and then actually pull the small though my side so about an inch of my intestines stuck out and sick a bag over it, thus giving me an Ileostomy.

Two days later I decide to let them remove my entire large intestine as it was beyond repair.

So here I am five months later, large intestine-less, with my guts poking through my abdomen. How I am I doing, you might wonder? Pretty freakin’ awesome, actually. I kid you not. I think I am handling the whole thing rather splendidly. I made it through the 7 stages of post ostomy surgery fairly quickly:

  1. Drug induced confusion
  2. Intense physical pain
  3. Grief
  4. Depression
  5. Over-whelming sadness
  6. Anger
  7. Acceptance

And in my case

  1. An overwhelming awareness of God’s love and faithfulness

Of course there are many challenges of living with an ostomy. First and for most, that I have a bag stuck to my stomach that catches the “output”. Gross, I know.  Also I must change that bag every few days. It’s a complicated process that can take anywhere from 20 to 60 minutes. If I don’t do it just perfectly the acid that comes out gets on my skin and itches and burns like hell. It is super painful which means I have to drop everything and go change it.  Then there is the fact that it might not stay on and the bag leaks. Gross, again. I do not have, and nor do you have, any muscle control in the small intestine. It’s not like the large intestine where you can engage your muscles and hold it until you reach a bathroom. I empty the bag through the bottom when it’s full, about 5 times a day and once in the night. My ostomy bag is on me 24/7. Please don’t ask me if I have to wear it all the time; it’s a stupid question, really.

I had to adjust the wardrobe a bit and soon after surgery and went on a very therapeutic shopping spree. No more skin tight shirts and crop tops for me, I guess! Just kidding; thankfully I didn’t wear that before the surgery either. At first I obsessed about not letting the bag show, but now I don’t care as much. I never hide it in my own home or around family and close friends. And I think now the only reason I conceal it is because I don’t feel like explaining what’s under my shirt! In fact I do such a good job dressing with an ostomy that when I do tell someone about it they are very surprised and I often catch them glancing at my stomach to try to see something—that’s right my friends, you are not as sneaky as you think! And one of my friends even likes to watch my outfit choices to see how I’m going to conceal it this week, which I kind of love her for.

And then there is the 6 inch scar down the middle of my stomach. And let me just bitch about that for a second, because in my humble opinion it is completely unfair that a 22 year old girl can’t have a smooth and pretty abdomen if she wants one! Are the worst things in the world? Yes, of course there are. But this is something that took some adjusting to. To me it is major physical change that happen overnight and there is no way to go back.  I won’t ever have that adorable little pregnant belly now! But, I have gotten used to it. I have even embraced it and I’m basically like Whatever, a body’s appearance doesn’t last forever any way.  And it’s not got to stop me from wearing a bikini in the summer or walking around in my bra in the house. And let’s be honest, it gives me tons of bad ass point to my name.

It might seem silly but in the beginning I constantly worried will guys accept me, will they want me now or am I too broken and complicated? Surely they could find someone with far fewer physical issues than me. I’ve been single for 22 years (and counting…) and it was like Greaaaaate. This will make it easier [insert eye roll here]. But I found that men, are indeed, quite wonderful people when it comes down to it. When it comes up and I find myself explaining it to a guy they are encouraging, supportive, and most importantly, tell me it doesn’t matter. Way to be guys, I appreciate it.

The good news is with 2 more surgeries I will have everything reversed in about 6 months: meaning all my insides will be on the inside, where they belong!

Let me fill you in on a secret though. The ONLY ONLY ONLY reason I am dealing, happy, hopeful, and living life is because of God. I would have given up a long time ago without Him. Without the hope He gives me I would either be a completely different girl or not here at all. How He has gotten me through all this is a story for another time, but rest assured it shall be told.

My family who is the second reason I am thriving today. They are the most supportive, encouraging, helpful, caring people I know and they put me before themselves every single day.

So here’s where all this tragedy led me. When something terrible happens, you can choose to be angry or to be happy. I much prefer being happy. So, after some consideration, that’s what I chose. Think how terrible it would be if I allowed this one little flaw to ruin every other great thing in my life! Compartmentalize people! That’s my trick! That and pray continually. And be strong. And fight hard. And find peace. And trust God.  So I guess it’s a lot of things, but with enough practice you get the hang of it!

I can already guess that most of you are about to google “ileostomy” so let me just save you time.

Here is mine:

2015-01-02 15.00.01

That grey pouch sticks on my skin and covers about an inch of small intestine called a stoma. I can wear the bag down like this when I need to empty it

Or

Up like this during the day when I’m doing stuff.

Up like this during the day when I’m doing stuff.

So there you have it! Don’t you feel like you learned so much today? You’re welcome.

Be young.

Be wild.

Be free.

With love,

❤ Mariah

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2 thoughts on “You Have a What?

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