Search

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

Category

Post Surgery #1

Goals Motha Fucka!

Ok. So You’ve all read me complain about being fat now…for months. I was watching this program on TV the other night about mega weight loss people, people who have lost 100+ pounds. While their stories were super inspiring because if their fat asses can do it, so can I, it was also terrifying. After watching fatty after fatty drop down to their goal weights, I saw what the weight loss did to their bodies. And holy hell. It pretty much scared me skinny. I wish. But I realized that the fatter I get, that if I ever lose this crap one day I could be stuck with one of those crazy “I lost a lot of weight” stomachs. See exhibit A.

Exhibit A

So here I am. Days before surgery, taking measurements, and researching how I can get skinny and not look like that. Yikes. Daunting. Taking measurements of myself is like a shock back into reality. I’ve seen the scale, I know what it says, but when you can’t get the measuring tape around you and you have to guess what you’re measurements are…thats embarrassing.

So heres the deal people. I realistically need to lose about 50 pounds to be in a healthy weight for my 5’2 frame. I can’t believe I’m doing this, but shit if it worked for Perez Hilton, its gotta be the best way. I currently weigh 182bs. That weight is starting to take a toll on me, and while I’m angry that most of that weight is due to colitis and what its done to me, I also know its my fault too. I have put on 50 lbs in the last year, and lost about 20lbs. When I was my heaviest earlier this year, I weighed 197lbs. That was terrifying as I was pushing 2bills. So I have resolved to tell you all more of my business that you don’t need to know, so that way I can embarrass myself skinny.

I have a “30 before 30” list, and on that list, is to run a 5K. Good news is I’m only 25 so I’ve got time, bad news is I’m fat now so I think thats an appropriate goal. More bad news is I’ve got 2 surgeries to combat some training, plus a year of immobility. So a year from now I’d like to run a 5K. I’m giving myself a year. A year in which I will probably start grad school, and also start for the first time in a long time, healthy.

In between surgery #2 and #3 I have signed up for 2 classes through community ed, one is a basic walking classes which I’m sure will be filled with people over 60, and another is a yoga and weight training class which will be filled with moms who just had kids. I’m also most positive. My goal is to lose a good amount of weight before surgery #3. Considering I’ll be back to eating jello and soup for a while, I think that could happen.

So there you go internet. This fat girl wants to be skinny, so much so that I’ve told you all a woman’s biggest secret. So lets hope in a few hours I don’t come back here and take this post off and pretend like it never happened.

Thanks friends.

I started this blog in March (I think). Since then I have had 6,500 hits. Now I’m no perez hilton but thats a huge number for me considering its over about 1,000 hits a month. I really wanted to take a minute and thank those of you who read my ramblings and more so those of you who comment. Your well wishes, and words of encouragement seriously are so awesome and often times its the only reason I keep writing. I really try to respond to every comment because I know that it takes a lot to actually comment on something. I read a lot of blogs and rarely comment. Those of you who keep reading and comment multiple times, you seriously mean so much to me and have made this whole stupid UC diseased butt journey worth doing. It makes me less hesitant to talk about things like shoving foam up my butt, and bags full of poop because i know you’re doing it too. Wait, you are doing that right? Its not just me?!

Anyway. Thank you. For real. From my butt to yours.

So what did you do Sunday?

So. Yea well I was just truckin a long. Days away from surgery, rockin this ostomy kickin ass and taking names. ….Lets talk about my sunday.

So, Sunday. I decided to spend a large amount of dollarz on Kick Rock tickets. Why? Because well its just something you do when you live in detroit…hes not that great but its more about the atmosphere. Don’t judge. Anyway, so I get there to tailgate like 2 hours in advance, drink a boat load and I’m having a (kid) Rockin time. All is well in Jackie land. So I’m hanging, having some in depth drunk talk with my boyfriends family, and the show starts. Yahoo. Well almost at the exact same time, my stomach starts to hurt. Like really hurt. So I just sit down and think ok this will pass. So I’m hanging out sitting down while everyone is having a great time and my stomach is trying to eat itself. So I grab the BF and I say, hey when we leave we might have to go to the hospital. I was pretty determined to tough it out. Eff you kid rock and your expensive lawn seat tickets. So anyway, A few songs into the set I couldn’t take it anymore. It coulda been my inebriated state or whatev, but regardless I had to leave. So we take our drunk asses and miraculously arrive at the BFs house.* So his roommate drives me to the ER, where my sister meets me. Mind you my sister has an infant…so she called a friend who left her child to come to my sisters house, until my mom could get there. It was a cluster fuck for sure.

So i get to the ER…and guess what. I dont have my new insurance cards yet…so I used my old ones…can’t wait till they figure that one out. Anyway here is what I learned about the er. You can basically walk in and say “ouch I hurt” and they are like, “ok here is some IV dilaudid.” SERIOUSLY.

I get in there, and I’m trying to hold it together so they can’t tell that I’m shit canned, and I tell them, I’ve got an ostomy and my stomach hurts, blah bllah blah. He gives me an IV, and I bleed all over the place. Then after I’ve been there awhile they ask me to pee in a cup, and I’m all “oh no, they’re gonna see I’m schwasted” and I hand them a cup full of clear pee. Like…No hiding the drunk factor. And NOTHING. They say nothing and just keep feeding me the dilaudid. So I do what I always do on dilauded…talk nonstop about made up stuff. From what I hear its rather funny, but I never remember. I do remember some ahole trying to shove his finger in my stoma…which I remember feeling far from awesome.

So they give me xrays and a CT scan (which is barely remember) and tell me that they see nothing. So I stay over night, and the two douchiest GI doctors come in in the morning and tell me, that my disconnected ass was causing my stomach pains…not a blockage. Is that even possible? I don’t think so. Whatever. Also at this ER there was no time frame in which you could get dilaudid and benadryl….it was literally everytime I asked. Coulda been every 30 minutes if I wanted. Slightly redic. If I was on heroin or something they would have just kept shooting me up. Whatev. So if you’re looking for some easy drugs…go to beaumont.

Anyway…I slept for literally 24 hours on monday…Monday does not exist to me. I feel fine now….ready to get this stupid butt stump out of me. C’mon tues.

*Lets pretend like we flew. I dont need your lectures.

10 days bitches!

So ten days till surgery #2. How am I feeling you ask? (even if you didn’t ask I’m gonna tell you) Well at this very second….I feel good. I’m not nervous, I’m ready to go, I’m antsy, I’m getting bored at home…but I’m also really bummed that I’m esstentially starting to say goodbye to my year…I feel like it will be spend on the couch for the next 4 months. I had a good summer over all, I did enough things to where I feel like having an ostomy didn’t phase me and the things I did or wanted to do. I went swimming, I rode my motorcycle, I played with my niece, and so on. The only thing that I really found annoying with the ostomy, was exercising. When I would sweat the bag would get sticky and the wafer would also get sticky on the edges. Yea its kinda gross. Anyway, surgery, coming up…send care packages.

Why is this guy playing ping pong?

I met up with a friend of mine yesterday, who I haven’t seen in about a year. A great friend who I wish I saw more. And she asked to see my bag. Then after that I showed her my stoma. I’ve only had one other person ask to see it, and perhaps they don’t want to ask because its weird but I have to tell you. Its nice when people ask. Its like they aren’t freaked out by your poop disease, or that you wear your poop around like an accessory. I wish more people would ask, instead it just seems like the world is grossed out about it. I mean if I had a transparent bag I might not show, but its opague dude.  My family has not asked to see it. Granted sometimes it hangs out, or I dont care to cover it the way I do around others, but there is just something really comforting when someone asks to see it. Weird.

Also as an update. UC is a real tricky fucker. So…here I am all thinking I outsmarted UC by removing my colon…yea well I did not win this war. Apparently due to the fact that I still have some of my

Dont ask. I googled Flare.

rectal stump (I hate that there is no other term for this. Rectum is not on my list of words I like to say), I also still apparently have UC. Oh and get this….its being a bitch! Yea the like 3 inches of bum I have left is flaring?! WHAT. Seriously, UC, seriously? This is such crap. So basically its like the urgency to go again, even though there is no plumbing. Its the urgency and also the straining, except this time I could really strain forever because nothing is coming out of there. Also there is some weird discharge but its like what I’ve had this whole time after surgery just more of it.  So I notice this, of alltimes, at Camp. Awesome. So I talk to the GI doctor on site there and I give him the scoop, and like the rad dude that he was he wrote me a script on spot without any stupid exams. I also emailed my surgeons nurse to ask her opinion. Thank god for cell phones with email. Anyway, awesome GI, gave me a script and I’m all wahoo gonna fix this crap. And then I remember.

Butt foam

My mouth is not connected to my butt.

Bummer.

So he gives me a script for Cortifoam Rectal Foam (theres thats damn word again). Its a fantastic foam you just shoot on up your butt. I have been lucky this far in that I have not had to shoot anything up my butt, or have suppositories. The amount of instruments up the pooper has been minimal at best. I suppose I was due.

So I get this foam, and I look at it like, ugh. Double ugh. Then I decide to just make it my bitch, and get it over with.* Honestly it did make me feel a lot better. Less urgency, far less blood. The blood freaked me out again. Its been so long since I’ve seen the blood like that. Its never fun to see tons of your own blood, let alone when you know its coming out of your butt. So long story short here, you can still have a UC flare when you have an ileostomy depending on how much RECTAL stump you have left….and if you do get a flare, good news, you can treat it by shoving a giant syringe up your ass.  No seriously, on a brighter note, I know that I am technically flaring right now. But I don’t feel it. Its only flaring in the one small spot, but I’m not fatigued or drained or dizzy or feverish, or all that other bullshit I used to be when I had a stupid colon. I do have more frequency right now because of it, but its pretty awesome to know that if I still had a colon I would being sick as hell right now, and well, I’m not.

*I’m pretty sure due to the nature of the rectal foam instrument, I was made it’s bitch if you wanna get technical about it.

Did you hear the one about the insurance company raping its customers?

Ok so get this. Heres the real dish on my insurance. I had ok insurance, but it turned out to be ROCKSTAR insurance after I got sick. $15 copays/prescriptions, and never more than $2500 out of pocket for a year including the deductible. So its expensive, but totally do able with payment plans and what not. So I’ve had surgery this year so I have already paid all of this money, paid it off, done accomplished and then the plan was to have the next 2 totally taken care of from here on out. WAHOOO.

Well….here’s the kicker. My insurance company just went out a business. Awesome. They are referring their clients to someone else, who wont deny me cause of my conditions but are also doubling my copays/scripts and tripling my deductible and out of pocket costs. Heres the real fun part, the deductible and money I already paid…doesn’t count for anything. So I will have to pay ANOTHER deductible, another BIGGER deductible again this year. Wow. Awesome.

Did I mention that I also recently lost my job?

So in order to hopefully screw my insurance company back, I am filing a claim at the Michigan Office for something something insurance related…and by me, I mean my mom.

This is what 4 months of ostomy supplies looks like

Also because who the crap knows what will really actually happen, I went nuts on ordering ostomy supplies. I ordered everything I would need from now until my next surgery which is about 4 months of supplies. Which is a lot of crap. I also have a small house with little to no storage…so where am I going to keep all of this crap.

Clearly the only logical place…the entertainment center.

No seriously, I have no where else. So this is where they will stay.

Long story short, I have no job, and waaaaaaaaaaaay more bills than I was ever anticipating. Awesome. Ok life. What else you got for me?

Camp Oasis 2010, Fenton, Mi, July 9-17, 2010

Wow camp was honestly not everything I thought it would be but it was for good reason. A lot of the other counselors had been there before and many of them were former campers. There was very clearly a strong bond/clique between them on day one of training which was slightly intimidating, but at the same time I was happy for them that they had each other from a young age in a way that I didn’t have anyone. They were happy, comfortable, and excited.

There were 2 days of training for the counselors which ranged from slide shows, to role playing dealing with home sick campers, IBD training for the Copneconic counselors and general camp information. Over all I liked training, I got to know some of the other counselors and I enjoyed spending time with them. I feel like I left with a few new friends, (even a jpoucher, hi Sara!). I felt like there was a lot of down/free time during training which I wish was structured with more ways for us to get to know each other even if it was just a bon fire at night. I didn’t see my counselor friends much once the kids got there so in a sense it felt like what friendships I had created were then somewhat lost because we all became instant parents to 10+ kids.

Some background on the camp itself. Camp Oasis is for kids 7-17 with Crohns or Colitis. Its a FREE camp for all of these kids, so money is not a reason they cannot come. Its open to anyone with IBD an all of the Oasis counselors also have IBD. The camp is organize specifically to meet the needs of kids with IBD and who are often sick…a lot. There is a med center with a full time volunteer medical staff including nurses and Dr. Truding, a local rockstar pediactic G.I. The med staff was amazing, friendly warm, comforting and all around great with every kid I brought there. And let me tell you, I was there far more than I had anticipated. I had a lot of sick kids, and one in particular that was CONSTANTLY sick. Practically living in the med center,but she didn’t want to leave. You see, these kids can’t go to sleep away camp anywhere else with their diseases. Its too hard to take care of them, their special meds, special diets and all that jazz. Straight down to supplying them all kinds of medication multiple times a day, and not needing to take them to a pharmacy. Every kid/counselor is supplied with a pill box prior to camp in order to make sure all the meds get there and are distributed at the right times.

Med time before meals was somewhat of a zoo.

My pill box...with my name spelled wrong...like it was spelled wrong on everything the entire week. ugh.

Boy/girl lines by last name, and about 150 kids in line waiting for their meds. Nuts….but also kind of amazing.

I had a cabin of 10, 10-11 year old girls. I was totally terrified of these children before I met them, as this age group can be

terrifying. But, after the first few hours they were awesome (mostly). There were a few that stood out more than others, but honestly, what a great group of kids. We didn’t have any bullying, no behavioral problems, 1 case of homesickness, and 1 accident but that was it. You are with this kids 24/7. All day, every day, and at times it was trying however most of the time, I liked being there. I miss hanging out with them. The weekend after camp it was so strange to not have them running up to me asking what our next activity was. Speaking of activities, we had some awesome ones. Zip line, Giant aqua slide, aqua jump, arts and crafts, horse back riding, a talent show and the list goes on. The camp is truly an amazing place and it was so nice to have real people in life to talk to and share stories with, without judgment. People you could laugh with about our accidents and IBD follies as opposed to hiding them.

So the kids. These are some old souls trapped in tiny sick, bodies.  It was great to see most of them up and running and playing and being normal kids, but then when we’d talk to them, about our diseases and I heard them explain their meds or see their surgery scars, it reminded me how very similar their stories were to mine. Then it was devastating realizing they have all done this at their young ages. The school they have had to miss, how they have a hard time making/keeping friends. It made me sad for them, but most of these kids are so positive. Its just their life and its what they live with. The excitement in their voice when they heard someone else was on the same meds they were or shared a GI doctor was almost like if they walked into school with the same outfit on.

I’m not going to say that these kids changed my life or the way I think about my disease. I will say however, that this camp and these kids are definitely doing that for other people. I think this camp changes kids lives, and meeting other kids with IBD is so beneficial to them. I cannot imagine doing this as a child, so for them to find people they can relate and talk to and grow up with, is so awesome. I really hope to be there next year meeting new kids and catching up with old ones. I hope that I can create a positive impact for these kids, they can learn from me, like I did from them.

So heres my ploy. Donate money, do the Take Steps Walk, help keep this amazing place up and running.

So much to tell you

Well. Heres the deal people. I’ve got LOTS to update on. Camp Oasis, next surgery, my douche bag insurance and all that jazz. So instead of one giant post I’m going to make a few small ones however, I thought this was important. I am still really struggling with my weight. A lot. I’m having a hard time dealing with it. Accepting it. Fighting it. ….being me. However. Today, is the first time in a long time that I felt like I looked ok. I actually took my own picture. I have only allowed pictures on 2 occasions in the last year, once being a single picture at my niece’s birth and the other was Camp Oasis.

Even in those sets of pictures its a cruel reminder of my current status, my weight gain, and my over all constant reminder of my disease. Even if I am feeling good about myself I see a picture and it all goes away instantly.

Ok I lied. There was a third. I applied for my CPL (concealed pistol license) and for that they needed a picture. I had that picture taken around april. I just got the CPL in the mail…and wow. No wonder I didn’t allow pictures. Now mind you, I’m no where near my pre sickness weight, but I have lost almost 20 lbs from my heaviest.

So…here I am. Today.

STEEEELLLLAAAAAA

Ok my stoma, Stella, has been a real bitch lately. Also the things I’m about to tell you, I found so important that I’m up at 4:57am typing this crap out. Why is that? Oh you know, just because I can’t effing sleep again. No seriously, this is BS. (brace yourself,  I feel a late night/morning rant coming on..and lots of spelling errors) Why is it that when I do not wake up at 6:30 it means I can’t fall asleep at night and I wake up a whole bunch and whatnot. I get the whole circadian rhythm thing, but come on. This is just so freakin’ annoying.

Anyway, Stella. So my output lately has been really…really. liquidy lately, so much so that the other day I’m pretty sure I got all dizzy/dehydrated that I had to just sit down for a minute and hang out.  I tried some immodium but it didn’t really help a whole lot. So anyway, (also if you’re not a current/former/future ostomate, you might wanna stop reading…..rachelle.) ….anyway right before I got all dizzy heres what happened. I was changing the bag/wafer that day and I knew my junk was all liquid….which makes replacing things really difficult because while its not covered you have a large chance that youre going to get your liquid crap all over the place…which, I gotta tell ya, is super awesome. More on this later.

"lard ass, lard ass, lard ass!"

So anyway, I decide, like the genius I am, to do this weird stand/squat/lean/pants on/backwards facing move over the toilet. Try to picture this, I’m sure its hilarious. Anyhoo, so as I’m washing everything and plotting dry and whatnot, I did notice some small liquid output and I’m all “whew thank goodness I was over the toilet” Then….like a freakin bat outta hell. Stella unleashes. And the only way I can think to describe this…and I apologize, is like vomit in the movies. Like a large, thick streak stream of constant liquid…for a good couple seconds. I was like…woa…woa…woa. It shocked the hell out of me. And brought up a ton of questions….what is the velocity in which my poo shoots outta my stoma when its liquid? Could I set a world record in distance? and most importantly, how can I remember to never change the bag again when its this liquidy. Holy hell, you guys I’m not kidding, I stood there a minute and just let it all sink in. Totally freaked me out…and in some really…off disturbed way…I think I felt like a dude. Except that, I’m a girl, I wasn’t peeing, and it was liquid poop coming out of my stomach…other than that totally like a dude.

So back to my liquid poop. Heres the awesome thing about liquid poo. Its super easy to empty your bag, granted you have to do it slow which is important otherwise it will splash, don’t ask me how I know. Heres the con…you have to empty it wayyyy before you would if it was a thicker output. Heres why…when you open the bag, and you’re all slowly putting it in to the toilet bowl….you’re totally gonna spill….dont ask me how I know. But if you try to go fast…you make it often…but equally as often there is an overspill too…don’t ask me how I know. Which inspired a dilemma…cause well I’m lazy. Wicked lazy….but I hear cleaning up liquid poo off the floor sucks….don’t ask me how I know.  So suggestion…..just empty sooner when its more liquid..besides most often its a lot heavier and more annoying to tote around liquid…far harder to disguise as well. Oh I might also suggest the reverse cowgirl toilet seat position in times like this…for some reason..its easier…and I just wanted to say reverse cowgirl in a blog.

Also along with the liquid..which is awesome..I already have to empty again in the 30 minutes I’ve been sitting here….its loud. Its really loud…and active..and stupid…and loud…and embarrassing…and loud. So if I could just get over this whole…ya know…loud/liquid stage…that’d be nice.

So yea, uh sorry for making you read that.

I'm out of smartass-ness today.

(are you guys tired of typing out the whole URL? Should I splurge ($10) and buy the damn domain?)

So as the next surgery draws near, I find myself slowly freaking out. Quietly, but still freaking out. I have had 3 surgeries in my life, never been scared or nervous or anything before them until this one. The is the only one I have gone into feeling good. I feel really good. Still fat. But good. Its hard to go into this one all chipper when I know on the other side is a lot of crap…ugh..literally. I’m nervous for #2 ….ha. No seriously.

Anyway heres the other kicker. My MS has been in remission since ’07. HuRah! right? But during the last 2 surgeries I was on a boat load of steroids. Which allegedly* helps the MS too. So if this is the case, well I’m not on steroids anymore. Peasants rejoice. But without the steroids there is talk that another surgery could aggravate the MS. Peasants…don’t rejoice.

So the idea of waltzing in there awesome…and leaving relapsed and in pain and with an asshole loop-ileo (ha. literally) doesn’t exactly give me the warm fuzzies. Eh I’m really just bitching now, but more or less. I’m nervous when I’m usually

I fucking hate these things

not. Its dumb.

P.s. Wanna know what I hate most about MS. The fucking glitter banners. I hate that crap…wrote about how much I hate them here.

* I find most MS therapies a load of capital B, Bullshit. Including steroid courses to help with replases.

Create a free website or blog at WordPress.com.

Up ↑

%d bloggers like this: