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

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Post Surgery #3

Thanks. No seriously.

I don’t get a whole lot of comments here, in fact I’m amazed that I get comments at all, considering all I do is talk about my ass. But when people comment and say that they’ve been following my story since it started, it is the most amazing thing. People rooting for me, learning from me, and probably laughing at me. To those of you who actually read this thing…and have read it more than once, I truly thank you. I know that it takes a lot to login in here, and take the time to comment, so it really means a lot to me that you actually do that. That this graphic crap that I write not only elicits responses….but positive ones.

We are a rare bunch, the ostomy/jpouch crew. But what I have learned through all of this is there are a lot more of us out there than I ever thought. You just have to look. And we’re all some pretty amazing people.

Under Pressure.

Today is the last time I will change my bag. Ever. (hopefully). The anxiety about this surgery is building…fast. I’m ready to get it over with, but at the same time I’m still wicked nervous about it.

In 4 days, I’m having surgery. This will be my 5th colitis related surgery. It seems unreal.

There is a lot of pressure related to this surgery. Pressure for it to work. But also pressure in my life. I’ve had to put my life on hold now, for like over 2 years, and now I have to get stuff back in order. I’ll have to find a job, in Michigan (good luck). I have to reorganize my life again, become a person again. Not just a sick person. I also have to evaluate a lot of the people and situations in my life. So much of this I’ve put off because of the stress of surgery and everything but now that the sick chapter of my life is closing, I can’t postpone all of this stuff anymore. I wasn’t just putting my life on hold in the sense of my career and vacations and things, but I’ve been putting off important decisions too. I had to make so many decisions during this sickness that I just ignored the ones that weren’t pressing. I can’t ignore life anymore. I don’t have any more excuses.

That is scary. I feel like I’m starting over. Like I just graduated college again, and I have to figure out my life. It feels like I have a lot of time to make up. I have a lot to prove to people that helped me and supported me through all this. I have to show that their time, money, and concern has been well spent. See what I mean? Pressure.

Life is hard. Being a grownup is hard. Being sick and trying to do it all on your own, is hard. People always told me that being an adult wasn’t much fun…but I doubt they realized it would be this unfun.

Help Joplin!

Word is Joplin has zero ostomy supplies. I know that when I became an ostomate, I got TONS of free supplies from the big companies that are just sitting around. If you have supplies, please send them.

The President of the Joplin Missouri Ostomy Association reported their supplies were destroyed when St. John’s Hospital was hit by the tornado. Please spread the word that he will accept shipments and get them to the people who can use them:

Benjamin Moore
7589 SE Quaker Road
Riverton KS 66770

It is on like Donkey Kong!

I saw Dr. Wasvary today, and we are officially 3 for 3 in the meeting/finger-in-butt ratio. He checked out the ole butt hole and good news…that sucker stayed open. WOOT WOOT. Sooooo…that means surgery on 6/6!!!! YES!!!

I’m so excited (and nervous but mostly excited [but still nervous])! That means my takedown is a week and half away. Holy bejesus. The thing is though…I’m doing this surgery here in Michigan, which means FAR less planning to get there. My parents don’t have to take time off work, and get hotel rooms and I don’t have to find someone to take care of my dogs!! This hospital is only 20 minutes away from my house. ZOMG…it seems so …dare I say, easy?

Tomorrow I’ll be writing my letter to Cleveland breaking up with them and telling them to fuck off, but with more pizazz. I’m hopeful. I really am. I am cautious, but hopeful.

Today it really hit me. In a week and a half, I won’t have my bag anymore. Wow. How weird. I don’t even remember life without the bag. Its been 14 months since I’ve had this thing…so much of my life revolves around it. Its just so weird to not have it anymore. I feel like we’re breaking up. I think about how I have ostomy supplies literally hidden all over my house because I don’t have enough storage. How my tooth brush holder, also holds a pair of scissors for emergency tape application. How I carry a large tool kit of all of my supplies in my purse at all times. Just think of all the other crap I could put in my purse in a week and a half! Or I could buy another tooth brush.

There is still that part of me that is too nervous to get my hopes up. I’m afraid in a week and a half I’ll look back on this post and feel stupid if I still have a bag because of a complication. I’m afraid I’ll want to kick myself in the ass for being so forward about my hopes. But…this is what I do. I lay it all out there, and sometimes I look like an ass to you guys because things don’t work. And sometimes, (it is rare) things work.

Lets hope this is one of those times.

You guys…

A WEEK AND A HALF!

I don't know what to title this entry.

Last Friday I went to have this new surgeon check out all my jazz and dialate my butt hole. After getting confused and getting lost in the hospital I went back to the prep rooms and answered the same questions about 400 times. Then it came time for the IV. I don’t get IVs anymore because I don’t have veins anymore. The last two times, I had major difficulty getting PICC lines in, and had to get a central line in my neck. So IVs are less than a party because everyone thinks their skills are awesome enough…when they aren’t. So a nurse walks in and I ask if shes confident in her skills and brief her on my PICC line history. 2 minutes later another woman rounded the corner to give me my IV. I like to scare those people away because I don’t want to become their pin cushion. This woman who put it in, was alright. She got it first try, but had to fish for it. I hate that. I’d rather they poke me again, than fish for it.

Anyway, I go back to the procedure room, and the new surgeon meets me in the hallway with a smile and a genuine, “How are you”. I asked him to explain this dialation a bit more. I needed details. I said will you use balloon or something? How does this work? And he goes, “Nope, I’ll just use my finger”. I have met this man 2 times, both times involved his hand up my ass. So they push about half of the anesthesia tube, and I got all awesome and loopy and even said something like “Oooo thats nice”. Then I woke up in recovery. ……With a leak. DAMN IT. I had to have them go find my mom, get my supplies, so I could change it..in my bed..that had poop in it. The recovery nurse was obviously not used to ostomies because she kept asking me what she needed to do. I was like, just stand there and look pretty and hand me a paper towel when I need one. Calm down, crazy.

What the hell is this graphic? And why does it say Canada at the bottom!?

So apparently Dr. Wasvary came in to talk to me, but I had no idea. He did go talk to my mom, told her my pouch looks good, no leaks in there. He said he did to the dialation, and they are going to recheck me tomorrow to see if its still good. If it is still good…I can have surgery on 6/6. WHICH IS 2 WEEKS AWAY. HOLY HELL. So lets just say tomorrow is a big day. Why does it feel like every time I see a doctor is a “big day”. I’m super hopeful. I can tell my bum is different, I feel like I have less control over the stuff thats coming out.

Oh did I forget to mention that I’m pooping out of my butt? Oh yea. Thats awesome. I guess something about how my stoma has retracted (thanks for fixing that one, Remzi) causes A LOT of stool to actually go into the bottom hole in my stoma, travel down to my butt…and poop on out of there. Good news, is I can control it and for the most part choose when it comes out. The bad news is, I’m always worried I’m gonna poop myself again.

I’ve been really thinking lately about how I might miss my bag when I’m in recovery again. Its just so constant, secure, and brainless. Like, I dont have to worry about extra clothes, or bathrooms, or anything like that. I’m just really worried about this jpouch.

This is not me.

On a bright side. I haven’t updated you guys in a while. I am now 147 lbs…which is officially 50lbs down from last year at my heaviest. 2 days ago I went out and bought another size down in pants. I also have this stash of pants that I’ve been saving for YEARS. Women all have this. The “when I lose weight, I’ll wear those again” stash of clothes. Well I was too lazy to do laundry the other day, so I decided to try out those pants…NO SHIT THEY FIT. Heres the kicker…they are so old that they have some serious flare leg action going on. Super outdated…Imma have to make them into capris or something. But it feels good. I’m still not done yet, I’d like another 20lbs before the year is over. So after takedown and recovery, I’ll be back to my nazi eating and working out.

I don’t know what to title this entry.

Last Friday I went to have this new surgeon check out all my jazz and dialate my butt hole. After getting confused and getting lost in the hospital I went back to the prep rooms and answered the same questions about 400 times. Then it came time for the IV. I don’t get IVs anymore because I don’t have veins anymore. The last two times, I had major difficulty getting PICC lines in, and had to get a central line in my neck. So IVs are less than a party because everyone thinks their skills are awesome enough…when they aren’t. So a nurse walks in and I ask if shes confident in her skills and brief her on my PICC line history. 2 minutes later another woman rounded the corner to give me my IV. I like to scare those people away because I don’t want to become their pin cushion. This woman who put it in, was alright. She got it first try, but had to fish for it. I hate that. I’d rather they poke me again, than fish for it.

Anyway, I go back to the procedure room, and the new surgeon meets me in the hallway with a smile and a genuine, “How are you”. I asked him to explain this dialation a bit more. I needed details. I said will you use balloon or something? How does this work? And he goes, “Nope, I’ll just use my finger”. I have met this man 2 times, both times involved his hand up my ass. So they push about half of the anesthesia tube, and I got all awesome and loopy and even said something like “Oooo thats nice”. Then I woke up in recovery. ……With a leak. DAMN IT. I had to have them go find my mom, get my supplies, so I could change it..in my bed..that had poop in it. The recovery nurse was obviously not used to ostomies because she kept asking me what she needed to do. I was like, just stand there and look pretty and hand me a paper towel when I need one. Calm down, crazy.

What the hell is this graphic? And why does it say Canada at the bottom!?

So apparently Dr. Wasvary came in to talk to me, but I had no idea. He did go talk to my mom, told her my pouch looks good, no leaks in there. He said he did to the dialation, and they are going to recheck me tomorrow to see if its still good. If it is still good…I can have surgery on 6/6. WHICH IS 2 WEEKS AWAY. HOLY HELL. So lets just say tomorrow is a big day. Why does it feel like every time I see a doctor is a “big day”. I’m super hopeful. I can tell my bum is different, I feel like I have less control over the stuff thats coming out.

Oh did I forget to mention that I’m pooping out of my butt? Oh yea. Thats awesome. I guess something about how my stoma has retracted (thanks for fixing that one, Remzi) causes A LOT of stool to actually go into the bottom hole in my stoma, travel down to my butt…and poop on out of there. Good news, is I can control it and for the most part choose when it comes out. The bad news is, I’m always worried I’m gonna poop myself again.

I’ve been really thinking lately about how I might miss my bag when I’m in recovery again. Its just so constant, secure, and brainless. Like, I dont have to worry about extra clothes, or bathrooms, or anything like that. I’m just really worried about this jpouch.

This is not me.

On a bright side. I haven’t updated you guys in a while. I am now 147 lbs…which is officially 50lbs down from last year at my heaviest. 2 days ago I went out and bought another size down in pants. I also have this stash of pants that I’ve been saving for YEARS. Women all have this. The “when I lose weight, I’ll wear those again” stash of clothes. Well I was too lazy to do laundry the other day, so I decided to try out those pants…NO SHIT THEY FIT. Heres the kicker…they are so old that they have some serious flare leg action going on. Super outdated…Imma have to make them into capris or something. But it feels good. I’m still not done yet, I’d like another 20lbs before the year is over. So after takedown and recovery, I’ll be back to my nazi eating and working out.

Why does it feel like things are going too good?

I met with a new surgeon yesterday. He was very nice and didn’t seem like he wanted to run away from my disaster case. He already had my files that I sent over from Cleveland and had actually reviewed them before I got there. We talked about why I want to leave Cleveland, and also my concerns about this whole narrowing issue that came up on my x-ray. Apparently when my jpouch got hooked in place, when it healed it narrowed. I personally was a-ok with having a small asshole, but I guess apparently its not ok. Vicki told me that they would put me surgery and decide then and there whether or not they would complete the take down…which doesn’t seem very proactive to me. The new surgeon, Dr. Wasvary, said that he wants to do a scope to look things over, check out the pouch and the narrowing, and dialate my butthole. He said this if the dialation stays that he would/could do my surgery on 6/6 just how I want. Why is this not an option at cleveland? Why is it a better option to put me through 2 more surgeries as opposed to clearing up the problem with a 15 minute outpatient procedure? Seems completely ridiculous to me. I already appreciate this man more. I explained to him my concerns with having my surgeon leave town the day of my surgery and he said that their practice doesn’t work like that and they “are there day and night to help their patients”. He wasn’t selling to me. He was just being real.

He was honest. He said that in a perfect world he’d would have the original surgeon finish the surgery, but that cases like mine happen and that isn’t always the option. Wasvery had some things to say about Remzi…he never came  out and agreed with what I was saying about his patient care, but I could tell he agreed. It was nice to have someone treat me like I wasn’t crazy.

Dr. Wasvary said that there is a chance that the dialation won’t stick and then we’ll have to make a plan from there. I told him about my goal date for surgery which is 6/6 and he said it was possible and they even put me in their books for that day so no one could take the time slot. I just felt understood there. I heard about this surgeon from a friend of mine who had him, and said she was really happy with him.

Have you guys ever switched surgeons? Thoughts?

Also…as if Cleveland wasn’t already a mess when it came to scheduling, they called me again, and said that Dr. Costideo could do my surgery on 6/6. BUT she will be catching a flight that day so, not only will I not have my surgeon but then I’ll get whover is on call for after care. To top that off…I would have to do preop a full week before hand which would involve another trip to cleveland. Again…all I do is schedule around them. I’m a little tired of it. I feel good about this new guy, but we will know tomorrow after he scopes me. Fingers crossed.

Eating my words

I am about 5 seconds away from retracting all of the good things I have ever said about Cleveland and Dr. Remzi. You guys, my super surgeon who was fighting for me and cared about me as a patient has essentially dropped me on my ass.

Lets rewind. When I first started at CC last March I felt so good about Dr. Remzi. You can read my old entries, I thought he was the whip. When my surgery failed, I was so mad, and he called me said we’d do this together. That we were a team. Right around December of 2010 things started to change. It was a slow change so I didn’t really see it. Dr. Remzi is the chairman of the colorectal department for the Cleveland digestive disease clinic. Hes important, hes busy…hes officially too fucking busy. Hes become careless with his patients and his time. Hes always out doing some conference somewhere, which makes him not around for your post-op appointments. At CC before you go under at sugery, they do a “huddle”, which is where they all stand over you and talk about you, and the procedure before you’re asleep. This time..they put me to sleep before he came in. Then he came one day I was in the hospital and jet-setted off. I also have not seen him at ANY of my post op appointments, not even when I got readmitted to the hospital.

Ok I understand also that I am not his only patient…the fact that he has left multiple patients multiple times is infuriating. I have other friends who are Remzi’s current patients, who all have experienced his neglect. Not to mention Vicki has turned into an uber bitch. It seems like they have become too busy to practice good medicine. If you want to do conferences, and be the chairman, FINE…but stop taking new patients. I didn’t sign up to have your fellow be my doctor…I signed up to have you take care of me.

This brings us to today. My surgery was scheduled for 6/7. Then I got a call that it had to get changed to 6/6, because, you guessed it, Dr. Remzi was going out of town. Friday I got word that it had to be changed AGAIN because his flight was changed. Not only have they changed it on me two times (which is not uncommon I know a LOT of other people hes changed on) but he wont compromise on the time. I CANNOT do surgery the week after. Period. I have to be recovering for camp. He won’t do my surgery 4 days earlier and solve this problem. So here we are.

I’ve requested a new surgeon. Of course, Vicki has told me, Dr. Remzi prefers that I wait for him. BUT I HAVE WAITED FOR HIM. Not to mention, they also sprung on me that I might have to have ANOTHER surgery after my alleged takedown. I’m so fed up. I’m tired of feeling like i’m getting brushed off…like this isnt my life but just something he has to deal with.

I requested another surgeron…Vicki of course is handling that, but assured me that she can’t guarantee another doctor will do it. So to sum this up….she can’t guarantee me a date Remzi will do it…and can’t guarantee me someone else will do it….so basically I’m stuck here just waiting for whenever they feel like doing my surgery.

No. Eff That.

I have a date set with the other surgeon…but I’m meeting with someone here, locally next week. I’m tired of being pushed around. I’m tired of not having any control or say in what happens and when. I’m trying to regain control. Even if my plans all fall through, at least I feel like I’m trying. I’ve just taken everything Remzi said, never questioned it, because he was the almighty Dr. Remzi. I think he is a good surgeon. But I also think hes lost what makes him a great surgeon. He does not care how he’s impacting his patients lives anymore.

Ok rant over. I’ll keep you posted.

Toddler Steps

Today is it raining and it it supposed to rain for like the next week. When you’re depressed rain is perfect to feed your negativity. It lets you stay inside, alone, in the dark, watching Sex and the City reruns.

Today, however, is one of the local Take Steps walks. I don’t do the walks because I hate fundraising.  And I hate fundraising mostly because I’ve already asked everyone I know for money before and I feel like I can’t do it anymore. But I’m volunteering for the walk, which I signed on to do months ago. I’m working one of the tents for Camp Oasis. This is literally the ONLY thing that is making me get off my couch today. I don’t want to go, I don’t want to be outside in the rain, and I don’t want to put on a happy face for the walkers. BUT I do think Oasis is one of the most important things I have ever done in my life and I want to help support it. Our local CCFA chapter has been having a tough time, and this means cut backs at camp this year. People are devastated. No seriously. A saving grace for me personally was getting asked to return for this summer, if I had gotten cut…it would just be one more thing on my pile right now.

I need to talk to our local chapter higher ups, about my ideas to help bring camp to where it needs to be. Its just a meeting. Its just a short drive to the office…but its so damn hard you guys. I went to the grocery store yesterday, and the whole time in there I just wanted to drop the cart, turn around and leave. I can’t handle the people, the noises, the lights, all of it right now.

I was watching one of my favorite movies last night, The Big Chill. If you haven’t seen it, you should. Its about a group of college friends that reunite after one of them commits suicide. Uplifting, right? Anyway, one of them said this

“For some people it isn’t the question of why to kill yourself, but why not.”

Hearing that was a moment for me. I have about 10 million reasons to die, right now. Yesterday. Tomorrow. I’ve got the reasons, I’ve got the tools, it would be really easy.

But there are only a few reasons for me not to. But these are really important reasons. I would say the reason, above all of the reasons is this little girl. I know it might not make sense, because she is just my niece and not my own child, but this little face is my whole world. I know that I won’t have kids, so she is the closest to my own that I will have. My sister went through a painful messy divorce this year, so I was there to help her raise this child from the first month she was alive. Watching her grow and change is amazing. When I told my sister about all of the things that have been going on, she basically told me that I have to be here for this baby. I have to be the person she can turn to in the future when she can’t talk to her mom. I have to be her co-parent, even if I am just an aunt. Thinking that my number one reason to live right now, wasn’t even in this world just over a year ago is crazy. It also makes things a little more hopeful. A year and a half ago I didn’t have this baby in my life, but I also didn’t need her “support”. But now, the support of a 14-month old is keeping me alive. I want her to grow up being a strong woman, taught by strong women. I can’t have her knowing, that I wasn’t strong enough to live…live for her, my family and myself.

I really hate that this is where my life is. Its shameful. Its hard knowing that I put this out for people who know me in real life to see….and some of them have. There is humiliation I know I’ll have to feel when I see these people again. I know that they don’t know what to say, I mean I don’t expect them to say anything.  Ugh. But I have some great friends…who don’t know what to say, but have all managed to say the right things.

And on that note, here is my favorite scene from The Big Chill. It will make you smile.

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