Wednesday, July 25, 2012

Some side effects are understated.

Hello, hello...
Want to start by posting a pic of my big 1 year old. Her cute smile makes me smile...


Last week at my appointment with my surgeon he recommended I start on Lomotil (anti-peristaltic) to attempt to slow my output as it is seriously nearing a quart a day. Not kidding. He figures that is what's behind me almost blacking out and seeing spots and getting lightheaded. So my Hubs picks it up and the Pharmacist specifically tells him to make sure I don't drive while on it, or do anything really active or that I could hurt myself. It is a narcotic after all but I thought it was a bit overblown. So night one of picking it up, I read the dosage and it's 2 pills(5mg) every 4 hours. I decided to take one just to try it out. I like to test out what a new med will do to me, especially a controlled substance (it's chemically similar to Demerol). Well, I know I'm a lightweight and all, but holy crap. I took it right around 8pm. I never saw 9pm. I don't think I saw 845p. I got woozy and my legs got tingly after about 20 minutes so I laid down. I didn't wake back up until 715a with my alarm. Full on like I was roofied. OMG. Soooooo- double that every FOUR HOURS!!!! I wouldn't be awake to take another dose for two days! Unless I want to sleep my entire day away, I can't take it. So I'm going to attempt to take the full 2 pills before bed and hope 1/4 of what he wants me to take daily will help. Seriously- what the hell. Good thing the house didn't catch fire because I don't think Hubs would have been able to wake my ass up!
Another fun thing that's happening over here is the skin issue I developed on the area that is under my wafer. Yeah- it's always covered, in this heat, sweating, being heated by my skin, never fully dries.... Can you guess the issue???? Come on, you can do it!




YEAST Infection!!! WOOOHOOOO--- on my skin. Yeah- sweet. So gross. Do you have any idea what it's like to itch under the bag and wafer ALL day but you just can't scratch it. Holy shit, it's like torture. So I bang on it. Yes, like a crazy person. Banging on my abdomen. It just itches so horribly it makes me insane. Oh, you need a visual??? Certainly- you only have to ask once! =)





All that red and bumpy stuff is the culprit. At first I thought I was just having a reaction to the adhesive, which surprised me because I don't have sensitive skin. My ET nurse confirmed it via text when I sent this pic on Sunday. 
Nasty business. I'm treating it and supposedly it will be gone in 1-2 weeks. In the meantime I have to change my wafer every 48 hours to treat my skin and that's just a big PITA (Pain In The Ass).
Doesn't Stupid Stoma look like she's sticking her tongue out? 'Haha lady- screw you'.  Yeah, I'm very, very mature. Oddly, SS hasn't embarrassed me in class yet. She must still be asleep at 8am when my class starts. I hope she keeps sleeping in!
I'm in the process of going through my clothes. I have clothes in every size from 2-10. I just pulled out 4 pair of Levis that look like I wore them once. Juniors size 3. Yeah- I was pretty skinny. I can get them on and buttoned even with the bag tucked in, but they are TIGHT...... so, they will not be kept.  Then I have my i'm-on-prednisone-jeans where I pack on a bunch of weight. Those are all like size 30. Some nice ones too.... Sevens, Joe's.... They fall off of me. My closet is exploding. I know I'll never be fluctuating again with flares and meds so I don't see the point of hanging on to a full size run of clothing.
I'll be ebaying very soon! I love ebaying.
That's it over here for today. I've got a quiz to study for and a big night of going into a coma on my meds! I know, I know... I live on the edge. I need to slow down. Gotcha! ;-)
Thanks for reading!

Sunday, July 22, 2012

Reflection

I was going to blog the last few days but after hearing, seeing and reading so much about the Colorado shooting I didn't feel like anything I had to say was important. It was so heartbreaking to read everything and to know how calculated the shooter was in planning the massacre of innocent people. What did he think that would accomplish? I read he was failing in his PhD program so he withdrew from it. Did killing those people suddenly make him a more successful person? It's so horrifying. So sad. Over and over with these shootings we see that the shooter was an extremely introverted loner. No friends. Always kept to themselves. That is so troublesome. He had no criminal record but was obviously whacked in the head. And why is it necessary to ever need to sell an automatic weapon to a civilian? No one is hunting with one or using it as protection. It is a warfare piece of weaponry and it needs to be taken off the market. I'm all for SANE people having the right to guns, but NEVER an automatic weapon. Something has to be done. These tragedies are senseless and terrifying.
Now that my mini-rant is over...
I met with my surgeon Thursday. We are 4 weeks out from the barium enema to test my J pouch. If there are zero leaks then we can schedule surgery as early as the first week of September. Hopefully an OR will be available. I'm antsy and can't wait to get put back together. After speaking with him I sat amd thought about surgery #2. Sometimes it just doesn't work. You can get pouchitis, for example. As much as I can't wait to see how life is with the J pouch, if I had to have an ostomy forever I would be ok with it. There is definite inconvenience to it, but inconvenience trumps pain any day of the week. I've had enough of pain for the rest of my life. I feel like I've put in my dues and shouldn't have to have unnecessary pain ever again. That's just what I've come to terms with. Is it my ideal outcome? No, but I'm strong and secure enough to make it an ok part of my life. It would be an adjustment but like I said, it's way better than pain. I know this wouldn't even be an option for many. I know many people would rather fight internal pain for years than have an external issue like an ostomy. Not me. I've got too much to do to let UC take me down. Colon Eviction!!!! Best thing ever.
#1 has been gone 6 days. It's been VERY quiet!! I know she's having fun but I miss hearing her little Minnie Mouse voice. #2 turned 1 on Friday! I can't believe it. She's a crazy, funny little thing...so much personality!
Hubs and I are fighting colds. The whole day yesterday was consumed by a long drawn out nap. It's been so nice being off immunosuppressents and not being sick DAILY! Regardless, I guess I'm still susceptible to a cold. I guess I'm not Wonder Woman! Who knew.
My online class was a big waste. I'm withdrawing from it Monday. My other class is going well. 98 on my first test. And yes, I fought for the one question I got wrong to try to get the 100. I'm annoying like that!
My current obsession is with Pinterest to try to get ideas for this house. I am the worst with decorating and ideas. I'm a commitment phobe with paint colors. I want the house to have more personality than it does and have richer color. But again, I'm clueless so I have to try to steal other people's ideas. I'm just not artistic on any level! HATE THAT!
Yes, I need big help!! ;-)
Got bored with my blonde hair and wanted it somewhat red. Well, I went a bit overboard. It was dark!!! Luckily, red hair fades fast with washing and it toned down. I always feel more ME as a blonde, but I love some dramatic changes. Plus I feel bangs look better dark!
Here's a pic of the current me...
Ok everyone - happy Sunday!! Have a great day. Thanks for reading and feel free to share my blog.
XO

Tuesday, July 17, 2012

Gluttony

I am a slacker! Sorry it's been a bit. My summer class started and #1 left for Florida today so I was trying to spend some time with her. And honestly, I don't think I've had anything anyone wants to read. I'm boring myself!!
Life is SLOWLY dragging on. I have yet to swim. I am a loser. I go see my surgeon today because I am 8 weeks Post OP!!! Wow... crazy. I am hoping we can set a date for the enema test in another few weeks to see if I can get a green light for surgery #2. It's coming up fast and I can not wait!!!
My abs must be doing something odd in the healing process as the last week or so when I sit up, or stretch out etc...they are sore as hell. They are sore like I actually worked out the day before(absolutely didn't).
Still not gaining weight so I am enjoying the ability to eat whatever... I had McDonald's twice yesterday like a disgusting pig. OMG> Today I feel quite sluggish and have a headache and I know it's from that much nastiness going into my body. So, I'm going to try to lay off the garbage for a few days. That was overkill, my friends. Ewww...
Class is going ok, with the exception that it starts at 8am. They see me at my best(sarcasm). I get out of bed at 715 to leave by 740a. Yeah- I have become fond of the baseball hat. There is nothing in me that can attempt to beautify myself that early. Especially for school. I'm lucky I have a Keurig because that's as much effort as I can muster to make coffee even. I'm a slug.
Oh ok- Surgeon just rescheduled to Thursday..WTH. That's fine because I'm two days close to the 3 month mark then!
My stoma issues are minor at this point. Still some raw area directly around the stupid stoma(SS) that won't heal up no matter what I do. I just have to suck it up a few more weeks. It's just gotten really annoying having a radiating, burning area nonstop on my body. Then it gets itchy and there's nothing I can do but suffer! Arrghhhh...
Hubs and I took the kids to the Taste of Dallas on Sunday via the DART train. It was a nice adventure from them. The whole time I was just hoping I would blow a wafer! We got there and I went to change bags. Needless to say, the bathrooms weren't the most accommodating. Very disappointing. All in all no major issues. It was hot as hell outside so I had some discomfort under my wafer from sweating but the day progressed without drama. I had some delicious food. I don't know why Texas doesn't plan these outdoor fairs and festivals in the spring or fall. Summer is just absolutely too brutal for all this stuff. I love going to these things but not in heat like this. So dumb. It's so hot it's impossible to look good. I see these girls with their makeup dripping off, heels, hair curled and sprayed and they are literally sagging and melting. The melty face looks worse than them having no makeup on. One girl actually had her spray tan/self tanner dripping down her legs in streaks... yeah- time for a slightly new approach to beauty in this weather. Some days it's just too hot to try.
Here's #1 and me right when we got to the Taste. Before I felt like melting.


Yep- tank top, no makeup and baseball hat...Anything more would have slid off. =)

I think I can easily say that my abdomen is finally at the most 'normal' state it has been since before surgery.
So ready for the bag to be gone. It's become cumbersome and stopping me from getting dressed. I don't know how people say they wear everything normal and tuck their bags in because it just doesn't work like that for me. Jeans that should fit don't button right. Stuff doesn't sit low enough. A million things. I'm planning to go out tonight! I'm meeting up with an old friend who is in town to play an event with her band and want to get dressed up and have NO idea how I'm going to do this...Ugh..better go through the closet now!

Here's an update of the FrankenBelly.

Ok- I'm off to do some studying and figure out what's for dinner AND find something relatively cute for tonight. That's going to be tough!
Thanks for reading. Have a great week!
XO

Tuesday, July 10, 2012

30 day self esteem challenge. Days 1-9

Ok- I am part of this awesome page on FB called-My doctor knows me best from behind-. The owner Charis ( http://fullfrontalostomy.com/ ) is so great and is a huge advocate for IBD and ostomies. On her blog she has presented a 30 day self esteem challenge for those who follow her.. I am a bit behind as she has just posted Day 8. I wish I had seen it sooner. I'm going to catch up quickly so I can complete the rest of the month with her.


Day 1- The prompt has several facets. First, acknowledge your less desirable personal qualities. Second, reflect on how these qualities may have aided in your fight against IBD (no need to get too deep into this yet). And third, begin to consider how these qualities can be used to help raise your self-esteem and allow you to regain control of your life – or at the very least, learn how to control your reactions to the bad things that may come your way. 


Some of my less desirable personal traits include impulsiveness at times, tendencies to be selfish and bossy. I am stubborn when the need presents which is often. I want what I want right now so impatience is a big one.  I can be inappropriately sarcastic and quite bratty. I can be convincing to the point where it may be more manipulation than convincing. I am loud and obnoxious like it's my job. I have no shame. I am brutally honest usually without apologies.I give everyone a chance and if you screw up, that's it. If you burn a bridge with me I will never forget it, even long after the anger has subsided. "When someone shows you who they are the first time, believe them".


I suppose if you separate these traits they can be seen as pretty ugly. Coupled together, they have made me who I am and enabled me to not roll over and to fight through a few tough times and this life changing disease. Being selfish and bossy I never let a doctor talk me into anything I wasn't comfortable with including meds. If I had questions, they had to listen until I was done and if I wasn't satisfied I kept going. I never settled. If a med wasn't doing what I wanted it was time to try again. I refused to sit back and just let it all happen. I had a hand and a role in my treatment choices and disagreed freely with a doctor or surgeon at will. When I wasn't ready for surgery and they were trying to convince me, I said no way. It was going to happen on MY terms. I'm a brat. I never shut up about what I wanted, how I wanted it and what I thought may work best for me. I am not a sideline patient. I'm sure many nurses have cursed me, but oh well. When I have had hospital employees who I felt were just not appropriate in their jobs or their treatment of me as a patient, their supervisor was getting a meeting with me. Those 'negative' traits make me my own advocate. 
My humor, and sarcasm helps me through the crap. It helps me cope. It is my outward expression in this disease when many people would have laid down and let it win. People always say my attitude is amazing. That is grounded with sarcasm, and my lack of shame. My stubborn tendencies will push me through until I'm 'normal' again. My brattiness misses my old life, and the nonstop things I did and want back. Talking about what I've been through and blogging is helping a lot. Manipulation? Nah, just convincing others and educating. 




Day 2 Prompt: Approach a person unknown to you and compliment them. Make it totally random and be genuine.


Well, this one was easy for me because I do it quite often and not in that snarky, fake way either. I've never really been intimidated by other women. Everyone has their flaws, everyone thinks someone is prettier than them, or skinnier or whatever. If I hate my body, some other woman would kill for it. So, I have always just flat out said what I think. Last week leaving the doctor's, this woman had on this fabulous coral colored dress. Her skin was some exotic tan(not fake and bake) and OMG she POPPED!!! So I told her... I said, "I love that dress and that color is so amazing on you". Boom. Her jaw dropped. Then she smiled. That was it. I dind't feel the need to carry on superficially or say anything else. I just observed and commented. It made me feel good that I could be that way because quite honestly, she was a knockout. She was that woman that women generally hate... I hope I made her day. =)


Day 3 Prompt: Reach out to a friend or acquaintance who has been having a hard time, or perhaps a friend you haven’t talked to in a long time, just to say “hi, I’m thinking about you and wondering how you’re doing?”


This one is tough. I'm so caught up in my own nonsense that I forget about this. Between kids, and illness, and house and being hundreds of miles away from most of my close friends, it's hard to stay present in everyone's lives. There are a handful that no matter what, I can call and cry to, or can make me laugh until my stomach hurts(I don't mind now. A few weeks ago it would have sucked). I don't know why the phone calls can seem so tough to keep up on, when afterwards I feel so great hearing their voices. Life gets in the way but I need to stop and remember that life is empty without those people. 
I guess a big reason I don't is probably because my illness consumed so much of my life that I really didn't have much going on to talk about. I wasn't traveling or working. #1 had school and I started school but who the hell wants to talk to me about my classes. I didn't feel I had much to add to the conversation. I was just sick and in pain daily, and didn't do much of anything. I was kind of lame. Plus, I feel so foreign with my ostomy that it's almost like I'm an outsider. I don't revel in shopping or dressing like I used to. I am more self conscious than every before. It's pretty gross for the most part. I need to get past it. I know it'll get better and my connections will become more forefront in my life again. 




Day 4 Prompt: Think back to a time when you were really sick, stuck in bed or in the hospital, and try to remember one thing that you really, really wanted to do, but couldn’t. What was that thing? Are you able to do it now? If so, take whatever that thing is and make a plan for how you can start putting thought into action.


I would have to say with this one, the one thing I really wanted to do and couldn't was eat a proper meal without being tore up for 4 days. I was raised around great cooks and appreciate a great meal. This disease took out something that I enjoyed. A great meal, some wine, friends.... All three were eradicated from my reality. Now that I have my ileo, I enjoy food again and don't think twice. I forgot how nice it is just to eat and not weigh the consequences or brace myself for a liquid diet for a week, or needing pain pills to sleep because I ate a vegetable. It opened my eyes to how much we abuse our bodies and take for granted what works. I see people shovel disgusting, horrible foods into their bodies and cringe. I know how hard their guts are about to work. They don't feel it, but when you have IBD and thousands of ulcers in your gut, you feel every second they are working to move and process food. It is a big life changer to feel the impact in terms of pain, blood, and physical reaction. 


Day 5 Prompt: You’ve already made a list of your negative qualities and how they’ve helped you through IBD. Now make a list of your positive qualities and pick the one you feel most exemplifies who you are today and why it makes you proud.


This one is easy for me. I named my blog 'Gutsy Broad' for two reasons. #1 a play on my UC and #2 b/c I'm gutsy. Ballsy. Always have been. My strength walks in the room ahead of me. Not much intimidates me. Situations, people, the unknown. I fight for what I want. I don't take shit. I had a crap ass first marriage that I walked from to be a strong role model for my daughter and a horrible divorce and custody battle that followed. I fought. One thing I never wanted was for my daughter to see me weak, or see me compromise myself or my self respect. If that meant making a tough choice, so be it.
It was the same with this illness. Did I have moments where I cried, and said I couldn't do it? Absolutely. Those moments passed and I moved on, carried on. I opted to be opened up and gutted at my urging. Many, many people have been sick years longer than me and can't do it. It never scared me.
If I want it, I'm going to make it happen. I've held it together through the pain, unknown, and anxiety. I went back to school FT flaring daily and only missed 3 days all semester. There were mornings I had to force myself to get out of bed and MOVE. It took all I had. But this broad isn't giving up that easily. I'm happy to be the ballsy, gutsy broad that I am. Doormat, I am not!

Days 6 and 7 Prompt: What does it mean to you to FIGHT IBD? Do you feel that fighting to defy IBD places a lot of pressure on you? Do you feel the idea that IBD shouldn’t stop you from doing anything is offensive in any way? How would you characterize your own experience with IBD and do you think you’ve gained some good qualities or aspects in your life BECAUSE you have it??

To me, fighting IBD is not stopping or giving up on what your what your life to be. No quitting, no settling. Things may be horrible but you keep going. My illness doesn't define me. I'm not Lisa with UC. I don't wear it on my sleeve but I won't cower from informing people. I don't use it for sympathy. I don't use it as a crutch or a cop out. It's inconveniencing but me fighting it, isn't letting it win and overshadow my life. At times IBD has slowed me, but never stopped me. It has altered life, and the options I make but I take it on as a challenge. Healthy people say they can't do something... well, if I can do it with an autoimmune disease then they have no excuse. Having this disease has made me understand my body more than anything else. I'm more aware of how things work. It has also taught me to never settle. I may have stuck with a crappy doc for a while before I was diagnosed, but never now. I hired them..they do the job or don't. They want the best for me or I find someone who does. I don't regret going through this. I've gained a lot of insight into life. 


Day 8 Prompt: It may seem silly or childish, but try decorating one of your ostomy pouches – or have your children decorate some if you’re a parent. It may not seem like much, but having a few extra smiles each day when you look down can’t be a bad thing, right?


I have done this a few times, but only took one picture. I've had #1 decorate two. Now that I'm using disposables it's not the same. 
Here it is. 




Day 9 Prompt: For many ostomates, disguising our pouches is an almost constant concern. We worry that others will either catch a glimpse of our bags or see the outlines or both. It’s hard for us to accept that most people are probably not paying attention to our bellies because to us the bag is so obvious. Therefore, for one day (that will hopefully turn into two, then three, then four, etc.) I challenge myself to not look down to see if my pouch is noticeable when I’m in public. Can you do the same?”


This one is VERY tough for me. I am constantly checking, feeling etc...so paranoid ALL the time. ESPECIALLY when I'm in normal clothes (not comfy pants and t shirt). Once it has the littlest bit in it, I get even worse. Dresses and skirts work best for full camo because it doesn't affect a waistline. My bag switch has definitely helped me feel more confident though. The first month was brutal. It just feels so completely unnatural in every way.For the most part I think it's well hidden. I always ask Hubs if he can see it. I guess because I know it's there, I assume everyone knows there's something there. We all know what happens when you assume. =)
I'm feeling a little better daily. I swear I've seen people look, but it's probably in my head. If it's a new bag and empty I don't even look down anymore. I usually wear a right tank under everything to keep it somewhat flattened and smoothed out. I notice the bag when I don't. It's hard to layer in Texas summer weather. 
Getting better. I guess I shouldn't feel so self conscious. Have you seen some of the outfits on people!!!!??? And I'm worried about me? I need to stop it! =)




Okay everyone. I'm caught up. =)I'll be posting with day 10 shortly!!
Thanks for reading. 

Saturday, July 7, 2012

Grey out? Say what??

I've been a very bad, and neglectful blog mommy. So sorry it's been a while, but I actually had some stuff going on that actually had nothing to do with my crappy health! (GASP!).
My mom was in town for a few days and we were out and about with #1 and I haven't really been on my laptop much all week.
It was a great visit and I ate too much which was actually nice because I have been eating foods I have been avoiding for a few years.... One of my favorite things to eat is Tomatoes with Fresh Mozzarella and basil. Yeah- tomatoes were always a no go... I think I ate that twice this week!!! So delicious. And I can drink coffee again!!!! Oddly, I don't really enjoy it as much as I used to. Kind of annoying.
Summer is chugging along. I got special little tiny bags that are hopefully going to work so I can get in the pool now and then.
Here's a pic from yesterday showing my new bag I ordered.

I no longer empty anything. That's for the birds. I have disposable, one use bags from Convatec and they make life so ridiculously easy. It fills, you pop it off, toss it, put a new one on. It sits flat and can be disguised easily and most importantly the frustration and DISGUST I was feeling over emptying the effing bags 100 times a day is gone. It's like a Christmas miracle. =) For some reason dealing with that really depressed the crap out of me. I tried not to let it, but it was just there...playing with poo. NO THANKS. Moving on....
I took a pic with the new 'mini' bag in the same bikini I wore before surgery. I am a sicko and wanted a before and after shot. Yes I am thinner especially in the torso...but holy crap I am the fattest skinny girl I have ever seen. Any semblance of muscle tone has disappeared. Lovely. Maybe if I finally stop seeing spots and greying out I'll start working out. Ugh- The bikini tells no lies, my friends. You can't fool it.

Here's the mini bag----->
Here's my fat-skinny girl pic with the original.

 I obviously won't be wearing a bikini with the bag, no matter how small it is because people tend to freak out about what the don't understand or what they fear. So I got a tankini and that will work to hide my abdomen not because I'm worried about it, but because I need to protect the ignorant from themselves.
I need a vacation...still. #1 is going to Florida July 17- Aug 1st. Crazy! It will be quiet here for sure! Maybe I'll sneak into her bag. =-) What a brat!!

I'm still waiting to find out what is going on with me seeing spots and almost blacking out... Little tidbit- I am technically greying out. It's one shade before full blackout. My doctor told me and I laughed.
Anyway- the new guess is that I'm hypovolemic. Low blood volume. Can be caused by blood loss so rapid that you can not create it fast enough to replace, and dehydration among other things. Without a colon I'm not absorbing water and salt and potassium, and my small bowel is still 'learning' it's new job. My output is very high. I'm drinking nonstop but it can't compensate for what my colon did.  If you can believe it, until my bloodwork comes back, I actually had a doctor tell me to increase my salt intake... how often do you hear that! McDonald's french fries? Doctor's orders!! Salt will help me maintain and absorb more water. Essentially acting as a crutch to my poor stupid small bowel who doesn't know it's been promoted. On a side note, I am so happy I took a cell biology course last semester. When I read about all of this, and the doc explains it, I actually completely understand what it means. I can actually picture it in my head. OMG. So wonderful when the doc is using terms about it being isotonic, or potassium cations I know what it means.... so cool...but I digress.

Hubs and I went on a movie date while my mom was in town. That was the first movie we've seen since I was preggo. We went and saw 'Ted'. So freaking hilarious. I highly recommend it if you are not offended easily, enjoy 'Family Guy' and are familiar with Seth McFarlane's work. So funny. Loved it.

Here's a FrankenBelly update...I know you've all been on the edge of your seat so I will oblige. =)
Still some rawness and discomfort around the stoma. It's better than it's been. All my inflammation and swelling has finally gone away and my stomach looks more normal. I think it will probably stay this way. It will be 7 weeks post Op on Monday. It doesn't seem that long. Weird.
I went to see a Disability attorney yesterday to appeal my denial. Gotta love the government. Pay into SS since I was 16, and I have to fight and claw to use some of it. Nice. I'm sick enough to need a major organ removed because my health is so bad, but I should be working full time. Right.... I'm not sure any company would pay me to be in the bathroom 20 times a shift. Jerks. Oh, and my attorney has UC. So he totally gets it!!! How random is that!! So awesome. Thinking positive.
Going out to dinner tonight... I'm starving!! I can't even explain how wonderful it is to just eat something and not weigh the consequences or to be sick for 3 days because you ate something. I don't even consider how something will make me sick anymore because it WON'T!!! Now, if that isn't fantastic I don't know what is!
Everyone have a great weekend! If I swim I'll update you! Thanks for reading.
Cheers,
Gutsy Broad.