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Supporting the Colitis, Crohn's, ostomy and J-Pouch community one butt joke at a time

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Pre Surgery

At Cleveland…

Got my PICC line. Check. Will be tweeting as much as I can. Follow me @excusemydust. Am also cranky because I dont get to eat today…or tomorrow. And I’m running a fever again. Also this hotel doesn’t have wireless in the rooms. Which is really really stupid. And annoying. Also later tonight I have to do a super sweet bowel prep…awesome. Mega super awesome.

A few letters…

Dear Colitis,

You have really sucked up a lot of time in my life, but tonight I’m headed to Cleveland and I will be returning without you. Tomorrow I have a slew of appointments scheduled with a ton of doctors for make sure I’m surgery ready. You’ve done a lot of body destroying over the last year, and I’m still pretty pissed about that. You’re a real jerk. Well colitis, I’d love to say that you taught me a lot and its all been worth it…but thats a lie. I’ve met some great people and got a huge lesson in humility, but I still wish that you wouldn’t have picked on me. I was hoping we would have figured out a way to get along, but it appears as though you’re stupid and stubborn. So long. Jerk.

Love,

Jackie

_______________________________

Dear Colon,

Hey, how ya been? Sick I would assume. Its been a long ride colon, we’ve know each other a long time here, over 25 years. I feel like we started out friends and over time…we just grew apart. You no longer give me what I need out of this relationship. I won’t really miss you, but chances are I’ll think of you everyday. The memories we’ve shared together. I’m gonna ask the surgeon to take a few pictures of you..maybe even a video. Weird, I know. But seeing pictures turned out to be a great learning tool for me when I started this process. Hopefully someone else will get the same benefit. Plus I want to see how sick you really are. Anyhoo, I gotta get going. Peace out, I hope you have fun the bio-hazard waste party.

Love,

Jackie

________________________________________________

Dear Butt,

Good news! You get to take a HUGE break for a while. I know you’ve been workin really hard lately, and I appreciate that. So you know, enjoy your vacation. I hope you get to do some fun stuff. Perhaps have a few margaritas or something. I dunno…can butts do that? Probably not. Well thats pretty much all I’ve got for now. We’ll reconvene at a later date when you need to get my ass back to working. Literally, like the plumbing and what not.

Love,

Jackie

My Osto-baby.

My only and favorite sister just gave birth to her first child in January. Her pregnancy was a learning experience for us all, and it took place over the entire length of my UC journey. Watching my sister in her pregnancy and since shes a teacher and has summers off, during my hospitalizations, we spend a lot of time together talking about our very different situations. Very different? Perhaps not.  It was SHOCKING how often her pregnancy paralleled my sickness. Now she didn’t have an abnormally strange, or painful pregnancy but there were just so many things that almost made me wish i was pregnant cause at least Id get a kid at the end of it all…and shes done now. I feel like I’m just beginning.

We both spend almost the last year of out lives, eating, gaining weight, napping, being fatigued, getting stretch marks, having strange pains, having some changes in our pooping habits and the list goes on. Seriously, its totally ridiculous. Right down to the simple fact that I’m going to have a full 9 months from start to finish with these surgeries.I’ll be carrying around this pain in the ass. This thing attached to me, which is a major change to my body, which needs constant attention and monitoring.

Enter…my osto-baby. Now my osto-baby won’t be nearly as cute and entertaining as my Niece, however the hope is that its far less maintenance, and doesn’t cry. Its probably going to poop about the same.

Dear Osto-baby,
I don’t know you yet, and while I can’t say that Im really excited for your arrival, I am excited for the end of this all. Its going to take a while getting used to you, and I’m not sure that I really ever will. You’re going to change my life…HOPEFULLY for the better. Perhaps one day I’ll look back on the memories of you fondly, although I doubt it. Perhaps I’ll give a girlish giggle when I think of the embarrassment that you’re sure to cause me. Though that outlook is not so good, I have no choice but to welcome you in my life as you are coming whether I’m ready or not.

I hope you don’t suck too much.

-Jackie

An organization near and dear to my butt

Through jpouch.net I met a fantastical friend named Brevin. Brevin has already completed his surgeries and is living his awesome jpouch life. Brevin is the one that told me about Camp Oasis.

I was so shocked and amazed when I found out about this camp I immediately applied to be a counselor. Then after waiting a few days I didn’t hear anything, so I stalked down the local camp director and set up a meeting with her. I’m driven when something really peaks my interest. I’m also a little creepy.

Anyway…Camp Oasis. Let me tell you about how amazing this place is. Its a camp for kids with IBD, and its run on a volunteer basis with most of the adults around also having IBD. They bring in doctors and nurses and have this mega elaborate system for distributing medications and taking care of these kids. They ship in porta potties to put all over the camp so we can all poop at ease and without embarrassment. The camps give the kids a chance to be kids, with other kids who can understand them. They have water sports, horseback riding, ropes courses and so much other cool stuff for these kids. I cannot imagine having this disease as a child, and I was so thankful to know that there is a place like this for these kids…a place that I KNEW I had to be apart of.

Here’s the best part.  The camp…is FREE for all campers. Its free. Isn’t that amazing? This camp is possible due to only donations and if I  had a ton of money..I would be donating constantly I think this place is so important and I haven’t even been there.

This disease can be so isolating. So embarrassing. It can make you feel like you’re not

Got this while googling Kumbaya. Awesome.

even human anymore, and I’m happy that for just one week out of the year, we can all sit together, sing kumbaya and poop in peace.

So if you’ve got extra money that you’re dying to spend on something…donate to these camps. For realsies.

Stop me if you’ve heard this one

So a bunch of organs walk into my body and sit down at the bar.

A bunch of my organs hanging out

They talk amongst themselves about who is the most worthless and which one I could do without. Colon gets pissed off because its decided that hes the one thats got to go. So right before he leaves…he gets all belligerent and wreaks havoc on my bar.

Ok that was horrible. What I’m trying to say here is that though the finish line is wicked close…I feel worse than ever. I can’t decide if I’m legitimately feeling awful or its just a mental battle knowing its only 24 days away. The last few weeks have been miserable. Mega miserable. In fact miserable deserves a capital “M”. I’m nauseous all the time, today I’m dry heaving stomach acid. Over the weekend I had fevers again. I’m just tired of it all. So tired of being sick, and complaining about being sick.

Farewell old friend

I’ve also begun mourning my future losses.

Nope, not the loss of a major organ, but the loss of popcorn.

I adore popcorn, and it seems as though my love for its buttery popped goodness will have to be a thing of the past. How depressing.

Stop me if you've heard this one

So a bunch of organs walk into my body and sit down at the bar.

A bunch of my organs hanging out

They talk amongst themselves about who is the most worthless and which one I could do without. Colon gets pissed off because its decided that hes the one thats got to go. So right before he leaves…he gets all belligerent and wreaks havoc on my bar.

Ok that was horrible. What I’m trying to say here is that though the finish line is wicked close…I feel worse than ever. I can’t decide if I’m legitimately feeling awful or its just a mental battle knowing its only 24 days away. The last few weeks have been miserable. Mega miserable. In fact miserable deserves a capital “M”. I’m nauseous all the time, today I’m dry heaving stomach acid. Over the weekend I had fevers again. I’m just tired of it all. So tired of being sick, and complaining about being sick.

Farewell old friend

I’ve also begun mourning my future losses.

Nope, not the loss of a major organ, but the loss of popcorn.

I adore popcorn, and it seems as though my love for its buttery popped goodness will have to be a thing of the past. How depressing.

What if I Don’t Make it?

I feel like I constantly am asking myself throughout the day…what if I don’t make it?

What if I don’t make it to the bathroom?
What if I don’t make it to work on time?
What if I don’t make it here or there?

Colitis has constantly made me assess the “what if’s” of my day and my future. Before the confirmation of this surgery I felt like UC didn’t really have a strong effect on my life, but then I started really thinking about it.

I started thinking about what has become “normal” in my day that just plain and simple shouldn’t be normal to anyone.

This is what I look like. Beer and all.

I haven’t slept in my own bed in easily 4 months because its on the second level of my house. Too many times I had close calls…or just plain didn’t make it in time when trying to get down the stairs. So now I sleep on my couch every night of every week. I wake up easily an hour before I actually have to in order to make it to work on time because I have insane morning bowel issues…and sometimes I’m still late.

This is me. Having a baby. In a car. Not really.

I’ll find myself driving home from work, breathing like I’m going into labor to try to subside my abdominal pains and keep myself from having an accident.

Flushing a toilet filled with excessive amounts of toilet paper all covered in blood (pardon my graphic nature) and thinking nothing of it.

Or the simple fact that I never ever actually button my pants because the pressure hurts too much so I’m constantly pulling them up all day.

These things….are not…normal.

But I have just learned to accept them. This is my life. This is my reality. This is how I live and I make exceptions and modifications in my life to accommodate for this stupid disease.

Lately, though…things have not been so easy to accommodate.  I’m in far more pain than I ever was…the possibility of accidents has sky rocketed. The last week since seeing Dr. Remzi at Cleveland Clinic it seems as though my “normal” has been highlighted more so than usual. It seems like the universe is trying to tell me something…have the surgery…get over the colostomy bag…get back to normal. Real normal.

So back to the “what if’s”.

When I googled "pouch failure" this came up. I also like Capri Sun.

What if the recovery is WAY harder than I expect?

What if my pouch fails and I’m stuck with a permanent bag?

What if I regret my decision?

Why is it never…”what if this is the best decision I’ll ever make?”

I’m hoping that this will be the best thing I do for myself, because I can’t picture a lifetime of my “normal”. Its just getting to be too much to take.

What if I Don't Make it?

I feel like I constantly am asking myself throughout the day…what if I don’t make it?

What if I don’t make it to the bathroom?
What if I don’t make it to work on time?
What if I don’t make it here or there?

Colitis has constantly made me assess the “what if’s” of my day and my future. Before the confirmation of this surgery I felt like UC didn’t really have a strong effect on my life, but then I started really thinking about it.

I started thinking about what has become “normal” in my day that just plain and simple shouldn’t be normal to anyone.

This is what I look like. Beer and all.

I haven’t slept in my own bed in easily 4 months because its on the second level of my house. Too many times I had close calls…or just plain didn’t make it in time when trying to get down the stairs. So now I sleep on my couch every night of every week. I wake up easily an hour before I actually have to in order to make it to work on time because I have insane morning bowel issues…and sometimes I’m still late.

This is me. Having a baby. In a car. Not really.

I’ll find myself driving home from work, breathing like I’m going into labor to try to subside my abdominal pains and keep myself from having an accident.

Flushing a toilet filled with excessive amounts of toilet paper all covered in blood (pardon my graphic nature) and thinking nothing of it.

Or the simple fact that I never ever actually button my pants because the pressure hurts too much so I’m constantly pulling them up all day.

These things….are not…normal.

But I have just learned to accept them. This is my life. This is my reality. This is how I live and I make exceptions and modifications in my life to accommodate for this stupid disease.

Lately, though…things have not been so easy to accommodate. I’m in far more pain than I ever was…the possibility of accidents has sky rocketed. The last week since seeing Dr. Remzi at Cleveland Clinic it seems as though my “normal” has been highlighted more so than usual. It seems like the universe is trying to tell me something…have the surgery…get over the colostomy bag…get back to normal. Real normal.

So back to the “what if’s”.

When I googled "pouch failure" this came up. I also like Capri Sun.

What if the recovery is WAY harder than I expect?

What if my pouch fails and I’m stuck with a permanent bag?

What if I regret my decision?

Why is it never…”what if this is the best decision I’ll ever make?”

I’m hoping that this will be the best thing I do for myself, because I can’t picture a lifetime of my “normal”. Its just getting to be too much to take.

I blame my parents.

Tis true. I blame my UC on my parents. Most of you may be thinking well clearly I must have some horrible set of family genes which has caused me to come out with a sarcastic attitude and two auto immune diseases. While this may be the case, though NO ONE in the entirety of my extended families has either disease, this is not why I blame them.

Instead my parents did something to me so horrible when I was a child it has set the stage for the rest of my life. They did something that would turn out to be so prophetic its eerie. So I warn you parents out there… be mindful of the decisions you make for your children.

So what did they do that was so awful? What was SO horrible that I blame my entire diseased colon on them. They gave me a nickname.

A nickname? Yea, a nickname.

Whats so bad about a nickname?

The nickname set me up for failure, humiliation, and would foreshadow my life many years down the road.

The nickname…

Pooper.

See. Its totally their fault.

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