Wednesday, March 30, 2011

Acute abdominal pain = utter terror

So on Tuesday around 2pm my belly started to hurt.  Didn't have anything unusual for lunch.
It hurt in the upper portion just below the sternum and went through to my back.  And it just kept getting worse and worse.  And I had an Anatomy test on Tuesday at 3pm so I went and sat there trying to focus when all I could think about was "am I going to have to go to the ER?"
I drove home in tears because the pain was so severe.  And by severe I mean on that PAIN scale they like to give you, I'm at an 8 and I am scared.

See, I've had acute pancreatitis, about.... 6 or so years ago and it was awful.  And thats what comes to mind.  Another bout of it, so of course I do my symptom checker at web md and of course thats on the list and it says for severe abdominal pain go to the hospital and I'm certainly considering it, but my husband is at work and after all my surgeries and procedures and problems I know that I pretty much go straight to panic when something isn't right.  So I think that I'll just wait til 5:30 when Shon comes home and if its still bad then we'll go.

And all those thoughts come, you know?
I'll be at the local ER that's never even heard of the K-pouch and I will have to explain EVERYTHING and have the horror of getting an IV started with my minuscule veins.  And then I'll be hospitalized for about 4 days and miss a bunch of school and with my luck I'll be on the same floor that all my school friends do their clinical experiences on....
So, I take a pepcid because I was given IV pepcid when I was hospitalized with acute pancreatitis and pray and pray - God I DO NO WANT to be back in the hospital.
I decided to empty my pouch just in case, but not much came out (I didn't really expect anything)
About an hour later the pain is gone (I was in severe pain for almost 3 hours).
I went to bed exhausted and the mental images coming to me of trying to sleep in the hospital with my little sore hand IV and the loneliness and the smell were so vivid....
Thank you God that I am sleeping at home, help me not to be overwhelmed by my own stupid imagination.

So what was it?
Do I have an ulcer?  Can ulcer pain be that severe and last that long?
Will it come back?
Ate the same thing today that I ate yesterday and I feel fine.  I'm exhausted emotionally, mentally, physically, but fine.
And I really hate it that I am so scared of being back in the hospital.
But I am,
I am utterly terrified.

Monday, March 28, 2011

I've got a feeling

And its not what you'd expect.
Its about this whole k-pouch feeling of needing to empty, to put it bluntly - to poop.
I realized last night that I still don't have it down - that feeling that says its time to go-  and I'm close now to my 4 year k-pouch birthday.
See, last night, I did something really stupid.  I ate a large dinner late at night and then followed it with an even later snack (oink - I know, did I say it was stupid?)  Now, I emptied just before bed and I felt like I'd be fine until the alarm rang at 6am.
No.
So I woke with a start at 3am.  The kind of start that says your own body woke you like 'hey, I have to pee' or 'I have a migraine' or 'I'm gonna puke'.  That kind of start.  So I'm laying there taking a mental tally trying to figure it out.  Well, I think, I must have to pee and my brain hasn't caught up.  So up I go, take care of business and lay back down and try to go back to sleep.  Hmmmm.  Something's not right, the peeing didn't take care of that body alarm feeling.  And I'm just laying there and then it dawns on me, pouch must be full.  I guess.  And I don't know if it was the mental fog of sleep or just still trying to get a handle on the full-pouch feeling itself or maybe a combo of the two but I just couldn't make up my mind if that was the problem.
So I lay there for a minute or so trying to decide if I was ready to make the effort to empty at 3am when my body decided for me.  Go Do It.
Thank God I have this cath thing down because otherwise I can only imagine how long trying to insert it in a half-away stupor could take.  Reminded me of my emptying on a schedule days when I was still growing my pouch, what a pain that was!
So yes, it was the pouch and back to bed I went.
And as I'm laying there now fully awake unfortunately I was thinking, man, I still sometimes have trouble telling when the pouch is full and needs to be emptied.  Sometimes, especially after a meal when I'm full from dinner or if it happens at an unexpected time because of something I ate causing gas or something....
Its just a weird feeling.
Not like a "I have to poop" kind of feeling.
Just....
Full.  I guess, and if I wait too long it actually starts to hurt.  Which in turn starts to make me nervous.  And I swear to you when it gets that full I can feel the waves of peristalsis come and go, which increase the fullness/pain feeling.  And then my belly swells under my stoma like a water balloon.
Thankfully when its that full I usually do get a nice "relief" sensation.
But a full pouch just has a weird feeling.  And I hope I get a handle on it soon.

Tuesday, March 15, 2011

I'm sorry

I think I've spent a good part of my life apologizing for my "bathroom problems".
I mean, I can't help it that my colon turned traitor on me, yet I find myself constantly apologizing for it.

I was 13 when I got my j-pouch so every family trip "Dad, I'm sorry, can we stop again I need to go."
to my brother "David, sorry, can you let me in the bathroom first please?"
to my friends "sorry guys, give me a minute"
to my teachers "sorry, I need to use the bathroom"
Don't get me wrong, my family has never ever made me feel like my bathroom issues interfered with our lives or plans, but you can't help but notice how often people are waiting on you.
And of course things only got worse when I had that stupid fistula and the need to go became much more urgent.  Sorry, I'll be right back, sorry I took so long, sorry I had to leave in the middle of dinner (again).  Thank God that is over with.
So, now I have my k-pouch and I go a LOT less, only 4-5 times a day yet I still say it all the time.
"Sorry, I'll be back in a few minutes, Sorry, can you excuse me?  Sorry, I need to be going, I have ah, something I need to take care of..."
Because I'm not exactly in and out in 2 minutes, and when you're gone for 5 or so minutes some people worry about you and some people talk about your absence and some people are thankfully kind enough to ignore the fact that you've been gone for so long.
I'm just bringing it up because I caught myself doing it again and I thought "Why in the world am I apologizing?"  I guess I feel like my bathroom problems cause more disruption to other peoples lives than even my own which is total nonsense.
The other funny thing is that I noticed I have trouble saying "I need to use the bathroom."  I always say (to people that know me) "I need to pouch" or "I need to empty my pouch" because it is functionally SO DIFFERENT from the feeling of going to the bathroom, my brain doesn't really connect the dots.  I know I'm pooping but yet since I'm sticking a catheter in my belly and I stand or kneel I'm just..... emptying my pouch.  Its not really the same to me.
Maybe it stems from a sense of shame or embarrassment about the frequency, length of time, smell, etc.
Possibly, Probably.  I'm not sure that I"ll ever get over it.
Sorry.

Tuesday, March 8, 2011

Am I a freak?

I'd like to think NOT, but sometimes I kinda feel like it.
I'm a nursing student, and no one at my school knows I have a stoma or any history of digestive problems for that matter.  I've been debating about sharing it with a teacher or fellow students but...
I recently was part of a group presentation on colon cancer and I did the portion about ostomies and care.  Their faces.... the looks ranging from pity to disgust when I talked about ileostomies and stomal complications.
I kinda wanted to shout at them
I'm not an alien.

Do I want their pity?
No.  I used to want pity, back when I was unhealthy I wanted people to take pity on me.  But now, not now.  No, because now I'm healthy BECAUSE I have this stoma.

I chose this yes. sort of.  Options kind of limited you know between living with a horrible and chronic bowel condition that left me in debilitating pain and visits to the toilet over 12 times a day.  Sure so I chose to have an ileo then I chose to get my K-pouch which is WAY better (for me).
Yes, its kinda freaky that I put a catheter in my belly to go to the bathroom and sometimes I freak myself out like if I forget to bring my cath in my carry on (truly happened to me).  Stuck at JFK, just ate, feeling like I need to empty and suddenly discover NO CATH what the **** am I going to do????  Suffer for 2 hours before I made it to my home airport got my suitcase off the carousel and ran to the toilet to get some relief.

My Prof says "these people don't go to the bathroom once a day like you and me"
You and Me?  I haven't been a part of that group for 20 years and I'm only 32.
I sit there and listen and try not to smirk.
Does that make me a freak?

I stand in the bathroom and look at my self in the mirror after a shower.
My abdomen has a nice fat, light pink scar that runs from just above my bellybutton to my pubic bone.
My belly is a little lumpy, it will never be cute and flat.
My little red stoma stares at me, he will be with me until I die.
And you know what? I'm pretty happy to have him.  Pretty happy to have my K-pouch despite it all.  Does that make me a freak?