Some lasts of 2012...

Today is usually the day that a lot of people complain about how horrible this year was and they can't wait for the next. I could easily be one of those people. Instead, I think this year was awesome. I got gutted and got rid of a nasty rotting organ that was ruining my life. Many people would probably put that on their 'con' list for 2012, but not me. It is numero uno on the 'pro' list. Getting though that surgery and the following recovery feels like a huge milestone for me, not a setback. This time last year I was in such a different place physically, emotionally and mentally. Now I'm about ready for anything! Bring it on 2013.... you've got nothing. I was lucky to have been healthy enough post surgery to be able to fly to NY and celebrate my Gram's 90th birthday. I got to bring both of my girls and spend time with my best friend and her girls.  Looking back on this year I can say that I, hopefully, saw the last of the following; blood transfusions, 4 hour IV Remicade infusions, Prednisone pills, hospitalizations, blood loss, daily pain and fatigue, joint pain, hair loss, ... I could go on. There are a lot of 'lasts' from 2012. One thing that is definitely following me is my medical bills. I'm down to about $1600 on what I owe for my last Remicade infusion! I can't explain how great it is to not have my body pumped full of immunosuppressants anymore. I'm not perpetually sick! Yaaahoooo! I no longer spend time wondering what the hell all that crap was doing to me!! So great!
My husband told me last night that he is happy to finally be seeing 'me' again. That the last year and a half I've been a different person going through all of this and the last few months, little by little, I'm becoming myself again. That's the hardest part of all. Knowing that the people around you are suddenly dealing with a stranger. I'm sure Hubs had many days where he looked at me and wondered where his wife went. Oh- I know..I was either in bed, at the doctor's or in the bathroom... Living the life!! It was nice, and sad, to hear him say that to me. At least I'm bouncing back. I have big plans 2013- you hear me?? I have races to run, Anatomy classes to ace, work to find and maybe if I'm lucky, some new places to visit. For the most part, this year will be hard to top. I conquered some big hurdles. Without hesitation.
I'll be starting out 2013 by getting to write a special blog piece for another Gutsy girl's blog. I can't wait. I've almost finished with what I am submitting to her. I have to write about what makes me a gutsy girl. Keeping the entry focused and concise is tough because it's not my blog, I have so much to say and I want it to be great. I'll post the link when it's up.
So  to everyone out there who had some trying times this year, chin up... the things that challenge us and test us don't have to be negative things. We learn from them, we grow, we adapt and sway. As long as you take away from those challenges and make yourself better, they aren't negative. Let your failures and your hurdles inspire you. Drive you to do a little more, a little better. You will never have a year without hardship. It's just up to you to see them as something bigger than 'that awful thing you went through'. Don't be quick to label your challenges as horrible. Without those low moments, you can't appreciate, or even recognize the highs. Sending love to everyone this NYE. Wishing you smiles and laughs and a safe start to 2013. Catch ya on the flip side. XO

Today is usually the day that a lot of people complain about how horrible this year was and they can't wait for the next. I could easily be one of those people. Instead, I think this year was awesome. I got gutted and got rid of a nasty rotting organ that was ruining my life. Many people would probably put that on their 'con' list for 2012, but not me. It is numero uno on the 'pro' list. Getting though that surgery and the following recovery feels like a huge milestone for me, not a setback. This time last year I was in such a different place physically, emotionally and mentally. Now I'm about ready for anything! Bring it on 2013.... you've got nothing. I was lucky to have been healthy enough post surgery to be able to fly to NY and celebrate my Gram's 90th birthday. I got to bring both of my girls and spend time with my best friend and her girls.  Looking back on this year I can say that I, hopefully, saw the last of the following; blood transfusions, 4 hour IV Remicade infusions, Prednisone pills, hospitalizations, blood loss, daily pain and fatigue, joint pain, hair loss, ... I could go on. There are a lot of 'lasts' from 2012. One thing that is definitely following me is my medical bills. I'm down to about $1600 on what I owe for my last Remicade infusion! I can't explain how great it is to not have my body pumped full of immunosuppressants anymore. I'm not perpetually sick! Yaaahoooo! I no longer spend time wondering what the hell all that crap was doing to me!! So great!
My husband told me last night that he is happy to finally be seeing 'me' again. That the last year and a half I've been a different person going through all of this and the last few months, little by little, I'm becoming myself again. That's the hardest part of all. Knowing that the people around you are suddenly dealing with a stranger. I'm sure Hubs had many days where he looked at me and wondered where his wife went. Oh- I know..I was either in bed, at the doctor's or in the bathroom... Living the life!! It was nice, and sad, to hear him say that to me. At least I'm bouncing back. I have big plans 2013- you hear me?? I have races to run, Anatomy classes to ace, work to find and maybe if I'm lucky, some new places to visit. For the most part, this year will be hard to top. I conquered some big hurdles. Without hesitation.
I'll be starting out 2013 by getting to write a special blog piece for another Gutsy girl's blog. I can't wait. I've almost finished with what I am submitting to her. I have to write about what makes me a gutsy girl. Keeping the entry focused and concise is tough because it's not my blog, I have so much to say and I want it to be great. I'll post the link when it's up.
So  to everyone out there who had some trying times this year, chin up... the things that challenge us and test us don't have to be negative things. We learn from them, we grow, we adapt and sway. As long as you take away from those challenges and make yourself better, they aren't negative. Let your failures and your hurdles inspire you. Drive you to do a little more, a little better. You will never have a year without hardship. It's just up to you to see them as something bigger than 'that awful thing you went through'. Don't be quick to label your challenges as horrible. Without those low moments, you can't appreciate, or even recognize the highs. Sending love to everyone this NYE. Wishing you smiles and laughs and a safe start to 2013. Catch ya on the flip side. XO

Bionic feet and crafty wonders...

Well, I kinda sorta made the wreath I saw on Pinterest. I did run out of bulbs halfway but I think I did an ok job with what I had. Metal coat hanger that I scrounged from a friend, and some bulbs I bought that never really went with anything but I couldn't throw out. Here is a pic of my ring o'balls.

It's not as I had envisioned it but it works for me. I may rearrange some bulbs if I'm feeling ambitious but probably not. Let's hope the Grinch that stole my other one doesn't strike again.
I finally got all the wrapping and steri-strips off my foot from surgery. I haven't washed that foot since Thanksgiving weekend. Gross. I can finally shower without a bag sealed around my foot.
Here's a before and after.

There's still quite a bit of swelling and my range of motion isn't even close to 100% but I'm getting there. I have to exercise my toe a few times daily to get flexibility back and stop scar tissue from forming so I can use my foot properly. It really hurts to bend a toe that doesn't want to bend. I have two screws in there. So I am bionic. I still hate feet. That won't change. =)

In other news, I am full on raging about doctor's and insurance companies. I am so over it. My foot surgeon used an assistant surgeon. Well, said assistant is out of network. Apparently, I was supposed to ask my surgeon's office if the assistant was in network prior to agreeing to surgery. Would you have asked knowing your actually surgeon is in network?? I didn't even think about it. Why would I? So apparently I owe this assistant surgeon that I had no input about, $1300. Yeah right.... I'm not paying it. Such bullshit. I am so DONE with doctor's and meds, and insurance claims and blood work, and appointments. DONE! I just hung up with my insurance company and apparently I'M the idiot for not being more intuitive that I should have asked. Did I mention I called my insurance company prior to surgery and asked about an assistant surgeon being covered? Oh yeah. I was told I have 100% surgical coverage that covers anyone who needs to be in the OR. Ok... swell... let's move ahead. Now, AFTER THE FACT, the assistant surgeon isn't lumped into that. My cheeks are hot. I'm appealing it naturally, but I'm sure it won't matter. I was having a perfectly fine day until this happening. I'm sick about it. But can you imagine if I had asked and they said, oh the guy who assists is out of network and I said I didn't want him there? I probably would have had to find a new surgeon. It's so ridiculous I could scream.
I'm going to go outside in the cold and look at my crafty ring o'balls and hopefully snap out of my rage so I can call my surgeons office and not sound like someone related to Honey Boo Boo. I'm so mad the F bombs would be flying. So I'm going to take pause. I'll let you know what happens. What a crock of shit.

Well, I kinda sorta made the wreath I saw on Pinterest. I did run out of bulbs halfway but I think I did an ok job with what I had. Metal coat hanger that I scrounged from a friend, and some bulbs I bought that never really went with anything but I couldn't throw out. Here is a pic of my ring o'balls.

It's not as I had envisioned it but it works for me. I may rearrange some bulbs if I'm feeling ambitious but probably not. Let's hope the Grinch that stole my other one doesn't strike again.
I finally got all the wrapping and steri-strips off my foot from surgery. I haven't washed that foot since Thanksgiving weekend. Gross. I can finally shower without a bag sealed around my foot.
Here's a before and after.

There's still quite a bit of swelling and my range of motion isn't even close to 100% but I'm getting there. I have to exercise my toe a few times daily to get flexibility back and stop scar tissue from forming so I can use my foot properly. It really hurts to bend a toe that doesn't want to bend. I have two screws in there. So I am bionic. I still hate feet. That won't change. =)

In other news, I am full on raging about doctor's and insurance companies. I am so over it. My foot surgeon used an assistant surgeon. Well, said assistant is out of network. Apparently, I was supposed to ask my surgeon's office if the assistant was in network prior to agreeing to surgery. Would you have asked knowing your actually surgeon is in network?? I didn't even think about it. Why would I? So apparently I owe this assistant surgeon that I had no input about, $1300. Yeah right.... I'm not paying it. Such bullshit. I am so DONE with doctor's and meds, and insurance claims and blood work, and appointments. DONE! I just hung up with my insurance company and apparently I'M the idiot for not being more intuitive that I should have asked. Did I mention I called my insurance company prior to surgery and asked about an assistant surgeon being covered? Oh yeah. I was told I have 100% surgical coverage that covers anyone who needs to be in the OR. Ok... swell... let's move ahead. Now, AFTER THE FACT, the assistant surgeon isn't lumped into that. My cheeks are hot. I'm appealing it naturally, but I'm sure it won't matter. I was having a perfectly fine day until this happening. I'm sick about it. But can you imagine if I had asked and they said, oh the guy who assists is out of network and I said I didn't want him there? I probably would have had to find a new surgeon. It's so ridiculous I could scream.
I'm going to go outside in the cold and look at my crafty ring o'balls and hopefully snap out of my rage so I can call my surgeons office and not sound like someone related to Honey Boo Boo. I'm so mad the F bombs would be flying. So I'm going to take pause. I'll let you know what happens. What a crock of shit.

Fa La La La La....

Well, the other day I started pulling out all the happy, shiny decor that comes with the holidays. I hung my HOMEMADE wreath on the front door, admiring it momentarily and moved on. I wish I had taken a picture of it. It turned out pretty cute for about $15 in craft supplies. Well, low and behold someone stole it right off my front door in the middle of the night. This left me pretty pissed for a variety of reason. #1- it's a holiday wreath and you stole it- could you be anymore anti-holiday spirit. #2- it's worth $15 and took me 10 minutes to make. Of all the really nice wreaths, you took mine? #3- if you really liked it that much, had knocked, I would have shown you how to make one. #4- YOU STOLE A HOLIDAY WREATH.
WEll, I'm over it (not at all) so I have decided to make a new wreath with a tutorial I found on Pinterest. I've actually done quite a few things I've found on that site. I like it and waste lots of time on it. Anywho- the tutorial seems easy peasy- a wire coat hanger (a la Mommy Dearest), some basic bulb ornaments and a bow to accent. Simply mold the hanger into a circle and load it up with what you want, how you want..twist the ends back together, cover with bow and hang. I can handle that, right? We'll see. I'll update how it turned out. I am a bit apprehensive about hanging another one. What if I have some neighborhood enemy I don't know about, who is dead set on stealing my decor? Doubtful, because my harvest wreath didn't go anywhere and neither did my gold light up trees I had near my front door. So maybe it really is a form of flattery.
I'm also going to make a new tree skirt out of a round table cloth. Yes, who woulda thunk it. Thanks again, Pinterest. You are the best.
I like a decorated festive house for the Holidays. I think they make the house feel warm and inviting. I don't have extended family out here, and no one is coming to visit for Christmas so I think the decorating makes it seem real. Christmas was always very busy growing up... going from my dad's family, our house, friends houses, my stepdad's family... Sometimes multiple houses in one day. All houses filled with people, and food and laughter. Here in Texas it's Hubs, me and the kids. Part of the day the two older kids go with the exes. The house is empty, quiet. It tends to just feel like an ordinary day. It makes me sad. I wouldn't mind a houseful of people for next year. We might not have enough bedrooms but we have space. I don't know. I know I've been in a funk the last week or so with my own stuff and thinking about a quiet Christmas eve and day is making it worse.
My tree looks pretty and already has tons of gifts under it. Daughter #1 is very excited. She keeps counting presents.
OK- I am off to gather ornaments and then scrounge up a wire hanger. I will let you know how this craft works out. Have a great weekend. Thanks for reading. XO

Well, the other day I started pulling out all the happy, shiny decor that comes with the holidays. I hung my HOMEMADE wreath on the front door, admiring it momentarily and moved on. I wish I had taken a picture of it. It turned out pretty cute for about $15 in craft supplies. Well, low and behold someone stole it right off my front door in the middle of the night. This left me pretty pissed for a variety of reason. #1- it's a holiday wreath and you stole it- could you be anymore anti-holiday spirit. #2- it's worth $15 and took me 10 minutes to make. Of all the really nice wreaths, you took mine? #3- if you really liked it that much, had knocked, I would have shown you how to make one. #4- YOU STOLE A HOLIDAY WREATH.
WEll, I'm over it (not at all) so I have decided to make a new wreath with a tutorial I found on Pinterest. I've actually done quite a few things I've found on that site. I like it and waste lots of time on it. Anywho- the tutorial seems easy peasy- a wire coat hanger (a la Mommy Dearest), some basic bulb ornaments and a bow to accent. Simply mold the hanger into a circle and load it up with what you want, how you want..twist the ends back together, cover with bow and hang. I can handle that, right? We'll see. I'll update how it turned out. I am a bit apprehensive about hanging another one. What if I have some neighborhood enemy I don't know about, who is dead set on stealing my decor? Doubtful, because my harvest wreath didn't go anywhere and neither did my gold light up trees I had near my front door. So maybe it really is a form of flattery.
I'm also going to make a new tree skirt out of a round table cloth. Yes, who woulda thunk it. Thanks again, Pinterest. You are the best.
I like a decorated festive house for the Holidays. I think they make the house feel warm and inviting. I don't have extended family out here, and no one is coming to visit for Christmas so I think the decorating makes it seem real. Christmas was always very busy growing up... going from my dad's family, our house, friends houses, my stepdad's family... Sometimes multiple houses in one day. All houses filled with people, and food and laughter. Here in Texas it's Hubs, me and the kids. Part of the day the two older kids go with the exes. The house is empty, quiet. It tends to just feel like an ordinary day. It makes me sad. I wouldn't mind a houseful of people for next year. We might not have enough bedrooms but we have space. I don't know. I know I've been in a funk the last week or so with my own stuff and thinking about a quiet Christmas eve and day is making it worse.
My tree looks pretty and already has tons of gifts under it. Daughter #1 is very excited. She keeps counting presents.
OK- I am off to gather ornaments and then scrounge up a wire hanger. I will let you know how this craft works out. Have a great weekend. Thanks for reading. XO

What's left behind..

So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

WEGO health activist award nominee

I got nominated!!! My blog is nominated for Rookie of the Year!!! WoooHoooo!!!
This means a lot. I've put a lot of emotion into writing this with the hopes to help others who suffer and to raise awareness. Please take a moment to click and endorse my blog.
Thank you to all my readers!!!

http://badges.wegohealth.com/endorse-me?referrer=lisapolley

I got nominated!!! My blog is nominated for Rookie of the Year!!! WoooHoooo!!!
This means a lot. I've put a lot of emotion into writing this with the hopes to help others who suffer and to raise awareness. Please take a moment to click and endorse my blog.
Thank you to all my readers!!!

http://badges.wegohealth.com/endorse-me?referrer=lisapolley

Crohn's & Colitis Awareness week.

Hello out there. Starting on the 1st, it's Crohn's and Colitis Awareness week. I'm pretty sure we need a month because it continually blows my mind how people have never heard of either disease. 1 in 200 Americans has IBD. That's nothing to ignore. That's a pretty solid number. This is the reason why I basically don't shut up about my life and I'm online and talking about my guts, and my aches and pains nonstop. We, the IBDers, can't shut up. We have to be a pain in the ass and keep telling our stories.
This week has been a pretty rough week. I'm 8 days out from foot surgery and it still hurts pretty bad so I'm still taking Vicodin for it. Well, how many narcotics can a 110lb girl take a day? My usual routine is Lomotil twice a day to slow my system down(narcotic as it is related to demerol), and Flexeril(muscle relaxer) for some continuing spasms in a delicate area that are very painful. Sooooo- yeah... Taking some Hydros on top of that is probably a recipe for disaster so I quit the Flexeril and the spasms came back. But if I take that with the Hydros I go into a coma. I also cut my Lomotil in half which has triggered me cramping and going to the bathroom nonstop. It has a been miserable but I think I finally got a combo figured out that is working. <sigh>
I'm only 9 weeks post Op and I guess I think I'm Wonder Woman and should be just recovered and normal and moving on. This week taught me I'm far from it. I know it generally takes a year for the Jpouch to get working correctly and adapt but here I am in 9 weeks getting pissed because I'm still having issues. I'm nuts. I'm slowly coming to realize I am never going to be "normal". All of you who have known me for years are laughing because you know I never was! But seriously, I guess I had a teeny tiny delusion that I'd get put back together, and the only way I'd know about all these issues were from my scars. Uhhh- yeah. Nice one Lisa. Dumbass. I will forever have issues with food. There will always be things that I will need to avoid, or will give me pain. I may always have scar tissue pain. I may develop adhesions later and they cause pain. I may develop pouchitis and be sick from that. These are all things I know. I do. I just have to remember it daily and be conscious of it. I have to stop myself from overdoing it. I have to avoid things I REALLY enjoy, like salads, and filet mignon.
I will never be a normal person. Technically, I no longer have UC. I kicked it's ass big time. But I am forever an IBD warrior. I may always have issues. I wouldn't go back. Four years ago my symptoms started. I ignored them. I was recently separated and going out a lot. Working a lot. Sleeping little. I blamed them on my lifestyle change. I didn't have time to be sick. I was running nonstop as a newly single mom, running a store, having a social life again. By the beginning of 2009 my symptoms got worse and weird. I pushed through it still. I don't know if I had gone to a doctor sooner if it would have mattered or not. I think no matter I was heading toward getting gutted. I'm happy I went through it. I've learned a lot about my capabilities. I'm a strong bitch. I overcame. I fought even when every cell in my body wanted to collapse and stop. I'm happy it came to surgery too. No more biologics being pumped into me. My hair is pretty much grown in from all of it falling out from steroids. The meds always scared me more than being gutted. Truly. I don't think there is anything that can scare me anymore.
Back to Awareness week! Purple is the awareness color for IBD. I've made sure to rock my purple daily. Here I am for the week. ;-) Enjoy.
Listen to your bodies everyone. You know when something is off, and not normal. Don't wait. It won't hurt to get tested or checked out. It can hurt to wait. Take care of your body. Be your own advocate and cheerleader. Speak up about your journey and battles. You never know who it may help.
XOXO

Day #1. Great Bowel Movement shirt, CCFA bracelet, Girls w Guts bracelet

Day #2 Purple nails.

Day #3 I had a rough couple nights.  I was very crabby.  Still in purple. 

Today, day #4.Weirdo! No bangs. I hate me without bangs now. Still exhausted. Up til 4am.

Hello out there. Starting on the 1st, it's Crohn's and Colitis Awareness week. I'm pretty sure we need a month because it continually blows my mind how people have never heard of either disease. 1 in 200 Americans has IBD. That's nothing to ignore. That's a pretty solid number. This is the reason why I basically don't shut up about my life and I'm online and talking about my guts, and my aches and pains nonstop. We, the IBDers, can't shut up. We have to be a pain in the ass and keep telling our stories.
This week has been a pretty rough week. I'm 8 days out from foot surgery and it still hurts pretty bad so I'm still taking Vicodin for it. Well, how many narcotics can a 110lb girl take a day? My usual routine is Lomotil twice a day to slow my system down(narcotic as it is related to demerol), and Flexeril(muscle relaxer) for some continuing spasms in a delicate area that are very painful. Sooooo- yeah... Taking some Hydros on top of that is probably a recipe for disaster so I quit the Flexeril and the spasms came back. But if I take that with the Hydros I go into a coma. I also cut my Lomotil in half which has triggered me cramping and going to the bathroom nonstop. It has a been miserable but I think I finally got a combo figured out that is working. <sigh>
I'm only 9 weeks post Op and I guess I think I'm Wonder Woman and should be just recovered and normal and moving on. This week taught me I'm far from it. I know it generally takes a year for the Jpouch to get working correctly and adapt but here I am in 9 weeks getting pissed because I'm still having issues. I'm nuts. I'm slowly coming to realize I am never going to be "normal". All of you who have known me for years are laughing because you know I never was! But seriously, I guess I had a teeny tiny delusion that I'd get put back together, and the only way I'd know about all these issues were from my scars. Uhhh- yeah. Nice one Lisa. Dumbass. I will forever have issues with food. There will always be things that I will need to avoid, or will give me pain. I may always have scar tissue pain. I may develop adhesions later and they cause pain. I may develop pouchitis and be sick from that. These are all things I know. I do. I just have to remember it daily and be conscious of it. I have to stop myself from overdoing it. I have to avoid things I REALLY enjoy, like salads, and filet mignon.
I will never be a normal person. Technically, I no longer have UC. I kicked it's ass big time. But I am forever an IBD warrior. I may always have issues. I wouldn't go back. Four years ago my symptoms started. I ignored them. I was recently separated and going out a lot. Working a lot. Sleeping little. I blamed them on my lifestyle change. I didn't have time to be sick. I was running nonstop as a newly single mom, running a store, having a social life again. By the beginning of 2009 my symptoms got worse and weird. I pushed through it still. I don't know if I had gone to a doctor sooner if it would have mattered or not. I think no matter I was heading toward getting gutted. I'm happy I went through it. I've learned a lot about my capabilities. I'm a strong bitch. I overcame. I fought even when every cell in my body wanted to collapse and stop. I'm happy it came to surgery too. No more biologics being pumped into me. My hair is pretty much grown in from all of it falling out from steroids. The meds always scared me more than being gutted. Truly. I don't think there is anything that can scare me anymore.
Back to Awareness week! Purple is the awareness color for IBD. I've made sure to rock my purple daily. Here I am for the week. ;-) Enjoy.
Listen to your bodies everyone. You know when something is off, and not normal. Don't wait. It won't hurt to get tested or checked out. It can hurt to wait. Take care of your body. Be your own advocate and cheerleader. Speak up about your journey and battles. You never know who it may help.
XOXO

Day #1. Great Bowel Movement shirt, CCFA bracelet, Girls w Guts bracelet

Day #2 Purple nails.

Day #3 I had a rough couple nights.  I was very crabby.  Still in purple. 

Today, day #4.Weirdo! No bangs. I hate me without bangs now. Still exhausted. Up til 4am.

I need my head examined. Seriously.

Yes Ladies and Gents... I am off my rocker. Just when I was feeling close to normal and the lomotil was doing it's job, what did I do? I scheduled elective foot surgery. Yep. It's true, I have been putting it off for roughly 15 years and all, and I figured why not. My deductible is met, I'm not working, I'm taking an online class and it's going into colder weather when I tend to hide out anyway.
I hate feet. No feet are attractive. Supermodels have ugly feet. Ryan Gosling probably has ugly feet.
I inherited some sweet bunions. My feet hurt a lot and working years in retail did not help out. I had my right foot corrected in 12th grade. And now at 35 I've tackled the left. It's not even that painful. Maybe to the average person, but this 'pain' is laughable compared to UC pain and surgical pain from getting gutted. This is nothing more than an annoyance at best. I've barely taken any pain meds. I think two pills in 24 hours. I can't walk on it at all for a week. No weight on it at all. So that means crutches. They are awful. Every time I'm upstairs, something I want is downstairs and vice versa. It takes me 9 years to navigate across the house. Ugh- what was I thinking. I'm laying in bed like a slug...gaining weight by the minute from not moving.
Luckily I got some shopping done last weekend because I will not have the capability to wander around for quite a while.
Here is Daughter #2 and me at Sephora--->

I am looking forward to driving those motorized carts in the store though. I seriously get excited about the lamest things. I also need to be elevating my foot. Translation- laying around with my feet up and having people wait on me.... OH! Sounds heavenly.
We went to the zoo Sunday- I am so weak from surgeries. Walking around for a few hours felt like I ran a 5k. OMG I am so out of shape. Once this foot heals up- I need to light a fire under my ass. No more skinnyfat girl. NOPE!


I go to the surgeon tomorrow to get the drain out. I tried to check things out but it is wrapped up mummy tight and I can't see anything. I will be taking pics tomorrow when he unwraps it! I'm such a sicko. My doctor's think I'm nutty.
As for my guts and stuff, the anestesia and narcotics have basically put my system in hibernation. NOTHING is going on. Probably why I'm gaining weight by the day. I even stopped the lomotil because I need something to change. Strong coffee? Prune juice? Taco Bell? Hmmmmm..... ;-)
Here is a pic of my feet.

Obviously the right one has no issues. Still ugly, but no issues.  I can't wait to see the left one tomorrow!!! Yeah! It'll be a bit before I can get a pedi though. That's going to suck.
Anyway- I'm just sitting on my ass, thinking that I'm nuts for doing this.
Here's my mummified foot all elevated in case you care.

 But if not now, when? I'd like to get back to work at least part time in January so that will be tough enough as I haven't worked since June 2010. I'll go back to retail part time but I can't do full time anymore. I can't do the nights and weekends. I have no interest or patience anymore getting treated like crap at my job when I could be home with my family. Plus I don't think my body could handle jumping into full time right away. Not to mention I'm taking two classes in the spring. That's a lot to juggle with the kids, house, etc.... Plus Hubs has commitments to teach on Tuesday nights and Saturday mornings so my availability will be far from open. Oh well...we'll see. First I have to be able to walk again... I won't be in a normal shoe for a while. I have a sweet Herman Munster platform velcro shoe. I'm going to have Daughter #1 sparkle it up and I'll post a pic. Gotta have some flair, right?? Okay boys and girls, I am off to ice and elevate and watch some stuff on TV. Maybe address my Christmas cards.
Everyone have a good night. I'll let you know how the appointment goes tomorrow and post some gross Post-OP pics of my foot!! =)
Later! XO

Yes Ladies and Gents... I am off my rocker. Just when I was feeling close to normal and the lomotil was doing it's job, what did I do? I scheduled elective foot surgery. Yep. It's true, I have been putting it off for roughly 15 years and all, and I figured why not. My deductible is met, I'm not working, I'm taking an online class and it's going into colder weather when I tend to hide out anyway.
I hate feet. No feet are attractive. Supermodels have ugly feet. Ryan Gosling probably has ugly feet.
I inherited some sweet bunions. My feet hurt a lot and working years in retail did not help out. I had my right foot corrected in 12th grade. And now at 35 I've tackled the left. It's not even that painful. Maybe to the average person, but this 'pain' is laughable compared to UC pain and surgical pain from getting gutted. This is nothing more than an annoyance at best. I've barely taken any pain meds. I think two pills in 24 hours. I can't walk on it at all for a week. No weight on it at all. So that means crutches. They are awful. Every time I'm upstairs, something I want is downstairs and vice versa. It takes me 9 years to navigate across the house. Ugh- what was I thinking. I'm laying in bed like a slug...gaining weight by the minute from not moving.
Luckily I got some shopping done last weekend because I will not have the capability to wander around for quite a while.
Here is Daughter #2 and me at Sephora--->

I am looking forward to driving those motorized carts in the store though. I seriously get excited about the lamest things. I also need to be elevating my foot. Translation- laying around with my feet up and having people wait on me.... OH! Sounds heavenly.
We went to the zoo Sunday- I am so weak from surgeries. Walking around for a few hours felt like I ran a 5k. OMG I am so out of shape. Once this foot heals up- I need to light a fire under my ass. No more skinnyfat girl. NOPE!


I go to the surgeon tomorrow to get the drain out. I tried to check things out but it is wrapped up mummy tight and I can't see anything. I will be taking pics tomorrow when he unwraps it! I'm such a sicko. My doctor's think I'm nutty.
As for my guts and stuff, the anestesia and narcotics have basically put my system in hibernation. NOTHING is going on. Probably why I'm gaining weight by the day. I even stopped the lomotil because I need something to change. Strong coffee? Prune juice? Taco Bell? Hmmmmm..... ;-)
Here is a pic of my feet.

Obviously the right one has no issues. Still ugly, but no issues.  I can't wait to see the left one tomorrow!!! Yeah! It'll be a bit before I can get a pedi though. That's going to suck.
Anyway- I'm just sitting on my ass, thinking that I'm nuts for doing this.
Here's my mummified foot all elevated in case you care.

 But if not now, when? I'd like to get back to work at least part time in January so that will be tough enough as I haven't worked since June 2010. I'll go back to retail part time but I can't do full time anymore. I can't do the nights and weekends. I have no interest or patience anymore getting treated like crap at my job when I could be home with my family. Plus I don't think my body could handle jumping into full time right away. Not to mention I'm taking two classes in the spring. That's a lot to juggle with the kids, house, etc.... Plus Hubs has commitments to teach on Tuesday nights and Saturday mornings so my availability will be far from open. Oh well...we'll see. First I have to be able to walk again... I won't be in a normal shoe for a while. I have a sweet Herman Munster platform velcro shoe. I'm going to have Daughter #1 sparkle it up and I'll post a pic. Gotta have some flair, right?? Okay boys and girls, I am off to ice and elevate and watch some stuff on TV. Maybe address my Christmas cards.
Everyone have a good night. I'll let you know how the appointment goes tomorrow and post some gross Post-OP pics of my foot!! =)
Later! XO

To my OBGYN with love.

Yeah.... considering how much time I spend at the doctors/hospitals etc... you would think I would just be miserable at the thought of having to go to the gyno. Not so much. My doc is AMAZING. I moved to Texas three years ago and I had two concerns; finding a salon and finding a gyno. Well, I just picked a practice. The first two times in I saw the NP who was nice. On a fluke I ended up with my current doctor because I had to reschedule. I am so happy that happened. Given all my IBD issues I was so ecstatic to have found someone to be real with. She listens and is real and we have a great doctor/patient relationship. Hubs has baked for her. She was completely on board for any issue that may come up with my IBD, especially during my pregnancy with Daughter #2. If every doctor was like her, the world would be better. She listens. She doesn't talk AT you all arrogant. She really is amazing. I had my first appointment with her post colon eviction. I got to show her the pics of my colon. She couldn't believe how awful it looked and more so, that once it came out I felt like a different person. She is one doctor I don't mind scheduling. She had left the practice I originally met her at and I followed her to her new one. Secretly, I think she likes me because I delivered Daughter #2 in only 7 minutes. :) Seriously. She came up the elevator right at 5 and VIP showed up at 507p. Nice. I guess the point of my post is to tell people to find doctors you can talk to. Who listen. Who talk to you, not at you. I've had more practice than a lot of people, but I can now say I'm surrounded by doctors that I never hold back from. The more you are surrounded by white coats, the more your filter comes off. I can say whatever I need to, ask embarrassing stuff, say embarrassing things and be totally ok with it. And the needles stopped freaking me out. Finally. Before all my UC started I never needed a doctor. I did my routine gyno trip and that's it. I'm getting closer to returning to that person. I can't wait for that day and I'm happy I have a rockstar gyno to do the honors!
****PSA- get regular pap smears girls. Check your tatas. A few minutes out of your day could save your life. XOXO

Yeah.... considering how much time I spend at the doctors/hospitals etc... you would think I would just be miserable at the thought of having to go to the gyno. Not so much. My doc is AMAZING. I moved to Texas three years ago and I had two concerns; finding a salon and finding a gyno. Well, I just picked a practice. The first two times in I saw the NP who was nice. On a fluke I ended up with my current doctor because I had to reschedule. I am so happy that happened. Given all my IBD issues I was so ecstatic to have found someone to be real with. She listens and is real and we have a great doctor/patient relationship. Hubs has baked for her. She was completely on board for any issue that may come up with my IBD, especially during my pregnancy with Daughter #2. If every doctor was like her, the world would be better. She listens. She doesn't talk AT you all arrogant. She really is amazing. I had my first appointment with her post colon eviction. I got to show her the pics of my colon. She couldn't believe how awful it looked and more so, that once it came out I felt like a different person. She is one doctor I don't mind scheduling. She had left the practice I originally met her at and I followed her to her new one. Secretly, I think she likes me because I delivered Daughter #2 in only 7 minutes. :) Seriously. She came up the elevator right at 5 and VIP showed up at 507p. Nice. I guess the point of my post is to tell people to find doctors you can talk to. Who listen. Who talk to you, not at you. I've had more practice than a lot of people, but I can now say I'm surrounded by doctors that I never hold back from. The more you are surrounded by white coats, the more your filter comes off. I can say whatever I need to, ask embarrassing stuff, say embarrassing things and be totally ok with it. And the needles stopped freaking me out. Finally. Before all my UC started I never needed a doctor. I did my routine gyno trip and that's it. I'm getting closer to returning to that person. I can't wait for that day and I'm happy I have a rockstar gyno to do the honors!
****PSA- get regular pap smears girls. Check your tatas. A few minutes out of your day could save your life. XOXO

Lucky me.

Please watch this before continuing.


Watch "The Butt Campaign" on YouTube

This video made me cry. Made me realize I am lucky for everything I've gone through. I had a carefree childhood. No chronic pain, bleeding, hospitalizations etc.... These kids deal with so much at ages they should be playing and having fun. Instead, they schedule doctor's appointments and IV infusions. I see my girls in their faces. I hope they never have to go through what I have. I know I will forever be paranoid when they have stomach aches or diarrhea. I know the fear that they will develop symptoms is in the back of my mind. That's why this video hit me. I am lucky I got 31 years of a healthy life before all this UC shit started. There are infants with ostomy bags like I had. Can you imagine your baby needing my surgery, and having an ostomy and a bag on it's sweet little body? Heartbreaking. The first time I saw pictures of that I cried. I am very lucky. Even at my age it's hard to handle but I can tell myself to shut up and suck it up and persevere. These kids who have IBD are so strong. I don't know how they hold themselves together so well and smile! So many days I've been falling apart and there are kids who are smiling and enjoying life. Bravo to them. They are amazing. We need to support IBD research and find a cure for this crap. It ruins lives, it affects babies and kids and adults. The meds have evil side effects. The pain on a daily basis is excruciating. I will continue to talk about my story, unembarrassed and open, so more people will understand. Breast cancer used to be taboo too but now through awareness campaigns and people being open, there is no stigma. That's beautiful. I'd like for IBD to be the same. The pledge connected to this video and this group is to vow to stay verbal, and active in the fight against IBD until a cure is found. Being a complete pain in the butt. I can do that no problem. More ways than one. ;-). I'm on the other side now, thanks to surgery. I used to have UC. My surgeries come with their own issues but it's nothing like it was. I am lucky. I am lucky UC showed up when I was 31. Very lucky.

Please watch this before continuing.


Watch "The Butt Campaign" on YouTube

This video made me cry. Made me realize I am lucky for everything I've gone through. I had a carefree childhood. No chronic pain, bleeding, hospitalizations etc.... These kids deal with so much at ages they should be playing and having fun. Instead, they schedule doctor's appointments and IV infusions. I see my girls in their faces. I hope they never have to go through what I have. I know I will forever be paranoid when they have stomach aches or diarrhea. I know the fear that they will develop symptoms is in the back of my mind. That's why this video hit me. I am lucky I got 31 years of a healthy life before all this UC shit started. There are infants with ostomy bags like I had. Can you imagine your baby needing my surgery, and having an ostomy and a bag on it's sweet little body? Heartbreaking. The first time I saw pictures of that I cried. I am very lucky. Even at my age it's hard to handle but I can tell myself to shut up and suck it up and persevere. These kids who have IBD are so strong. I don't know how they hold themselves together so well and smile! So many days I've been falling apart and there are kids who are smiling and enjoying life. Bravo to them. They are amazing. We need to support IBD research and find a cure for this crap. It ruins lives, it affects babies and kids and adults. The meds have evil side effects. The pain on a daily basis is excruciating. I will continue to talk about my story, unembarrassed and open, so more people will understand. Breast cancer used to be taboo too but now through awareness campaigns and people being open, there is no stigma. That's beautiful. I'd like for IBD to be the same. The pledge connected to this video and this group is to vow to stay verbal, and active in the fight against IBD until a cure is found. Being a complete pain in the butt. I can do that no problem. More ways than one. ;-). I'm on the other side now, thanks to surgery. I used to have UC. My surgeries come with their own issues but it's nothing like it was. I am lucky. I am lucky UC showed up when I was 31. Very lucky.

What a difference a year makes!!

Well hello out there internet land. it's been a bit since I've written so that could mean I feel fantastic or like total shit... it's been a little bit of both. I still wake up feeling absolutely liberated not having a rotting colon, and not having a bag 'o poo adhered to my torso. On the flip side, still dealing with pain that comes with rearranging my internal organs. First, a little factoid. The average person, from the moment of ingestion to elimination is anywhere from 18-48 hours depending on water and fiber intake. Your food leaves your stomach within 30 minutes and heads to the small bowel. The small bowel is not storage. In roughly 3-4 hours it sucks up the nutrients from the food and moves it into your colon. The colon absorbs water and electrolytes and anything left worth using and stores it until you have to go #2. Well, I don't have the colon anymore. So...after about 4-6 hours my food is gone. Sometimes that is very annoying. It can cause a bit more frequency than I'd like, but anything beats going 20-30 times a day, in pain, like I was before surgery. This leads to another factoid that I may have mentioned in the past. Your small bowel can not remove stomach acid from your waste. It never will. That's part of your colon's job, which I no longer have. To sum up- frequency + highly acidic poo = pain, misery and adult diaper rash. =( Still, I wouldn't go back. Life sucked pretty bad when I prefer a diaper rash. CRAZY.
I've started keeping a journal of when and what I eat, and subsequently, when I hit the throne. Wow- just reread that last part. I have seriously opened the flood gates into what should be the most hidden moments and details of what I'm dealing with and here I am sending it into the internet.

Here's me and my baby girl a few days ago when she turned 15 months. Happy I can spend time, run around and feeling so much better!!! =)

Here's a pretty recent pic of the FrankenBelly. Not as bad as I ever would have thought, but a lot of scar tissue that tends to give me pain if I move a certain way, or quickly. Yoga will not be possible for a bit. Just stretching in the morning hurts. Hoping it will slowly subside.

I've been using some scar fading stuff but not religiously. I'm obviously not too concerned. If it starts to fade as the vertical one did it won't be a big deal. It is very recessed though. Sunken in and weird. Everyone says it's look like a gunshot scar. I think my story is WAY better than a getting shot or knifed. I'll stick with the story about how I kicked UC's ass to the curb!! BOOM!

Had Halloween yesterday. It was so LOVELY to just stroll around the neighborhood, no urgency, with Dillan. The temps dropping brought us in, NOT MY GUTS!!!! That's a big deal. EVERY SINGLE moment, event, and day was impacted by my UC. Seriously it is as though the binds are gone. I was walking last night and pushing Violet thinking about how a year ago life was so different. I was ballooned from Prednisone. I hurt all over. My stepson B took Daughter #1 around because I wouldn't have lasted a block. This year I could have gone for hours. It was great. So liberating. A bonus---We have WAY too much candy left. It's going to be a food group for a while. My kids are damn cute!

I did full blown makeup to be a bearded lady... here's a before and an after----->

It was hard smiling in that thing. It was either Bearded lady or a Pig in a Blanket and it ended up being too warm to walk around wrapped in a blanket. I'm still not used to warm weather at Halloween. I subconsciously think I need the thermals under my costume!!
Here's me last year. I didn't even want my picture taken because the moon face was so bad and I was so ugly. I don't even recognize myself. How horrible that drug is. I think I packed on almost 40lbs too. I should have just put a bag over my fat head!!! =) And can you tell green is my favorite color. That's weird.

I have been thinking lately I want to do more in striving for IBD, ostomy and Pouch awareness. I don't know where to start. I think I'll contact my local CCFA. I really want to be out there as an advocate with my story and experience and make what we deal with and how it affects our lives a bit more center stage. It struck me the other day when I called my SSDI(Social Security Disability Insurance) attorney to update my file with my second surgery and how my meds changed and the woman at the office who I passed the message to said, "I'd ask what an Ostomy reversal is, but first I need to know what an ostomy is." It just took me aback. Is this stuff really that below the radar?? It shouldn't be. We are not that few and far between!!! Hello!!!! We all need to talk and get it out there. I'm sure at some point people were embarrassed to talk about breast cancer but now, there isn't one person who hasn't heard of breast cancer. And yet, they still spend millions every year on 'awareness'. Everyone is aware... in terms of that..it's time to just shift that money to research and treatment.
With IBD, there is little 'awareness'. Little understanding. Meds that rock our worlds and our bodies into worse situations. Other countries are leaping ahead with research and trials with intestinal transplants, fecal transplant etc... I would have been all on board for someone else's guts. Even one foot of colon would have to help right?? Ok, I'm off my soapbox and done contemplating biology and science I have to business contemplating. Have a great November 1st!!! I can not believe this year is winding down. One year ago I was dealing with a horrible flare of which I vowed to stay out of the Big H, extreme joint pain, Remicade infusions that weren't even working, 40mg of Prednisone(down from 70mg), a colonoscopy and CT scan and a cervical cancer scare and surgery to remove aggressive and quickly advancing precancerous cells. Last October and November were ROUGH!!! It just goes to show how much can change in a year. When you think you've hit the bottom, when the world is crumbling, if you just hang on and keep it together, you will look back a year later and amaze yourself at what you can overcome. We are all stronger than we think. We just have to give ourselves the chance to shine! Be well everyone. Thanks for reading. XOXO

Well hello out there internet land. it's been a bit since I've written so that could mean I feel fantastic or like total shit... it's been a little bit of both. I still wake up feeling absolutely liberated not having a rotting colon, and not having a bag 'o poo adhered to my torso. On the flip side, still dealing with pain that comes with rearranging my internal organs. First, a little factoid. The average person, from the moment of ingestion to elimination is anywhere from 18-48 hours depending on water and fiber intake. Your food leaves your stomach within 30 minutes and heads to the small bowel. The small bowel is not storage. In roughly 3-4 hours it sucks up the nutrients from the food and moves it into your colon. The colon absorbs water and electrolytes and anything left worth using and stores it until you have to go #2. Well, I don't have the colon anymore. So...after about 4-6 hours my food is gone. Sometimes that is very annoying. It can cause a bit more frequency than I'd like, but anything beats going 20-30 times a day, in pain, like I was before surgery. This leads to another factoid that I may have mentioned in the past. Your small bowel can not remove stomach acid from your waste. It never will. That's part of your colon's job, which I no longer have. To sum up- frequency + highly acidic poo = pain, misery and adult diaper rash. =( Still, I wouldn't go back. Life sucked pretty bad when I prefer a diaper rash. CRAZY.
I've started keeping a journal of when and what I eat, and subsequently, when I hit the throne. Wow- just reread that last part. I have seriously opened the flood gates into what should be the most hidden moments and details of what I'm dealing with and here I am sending it into the internet.

Here's me and my baby girl a few days ago when she turned 15 months. Happy I can spend time, run around and feeling so much better!!! =)

Here's a pretty recent pic of the FrankenBelly. Not as bad as I ever would have thought, but a lot of scar tissue that tends to give me pain if I move a certain way, or quickly. Yoga will not be possible for a bit. Just stretching in the morning hurts. Hoping it will slowly subside.

I've been using some scar fading stuff but not religiously. I'm obviously not too concerned. If it starts to fade as the vertical one did it won't be a big deal. It is very recessed though. Sunken in and weird. Everyone says it's look like a gunshot scar. I think my story is WAY better than a getting shot or knifed. I'll stick with the story about how I kicked UC's ass to the curb!! BOOM!

Had Halloween yesterday. It was so LOVELY to just stroll around the neighborhood, no urgency, with Dillan. The temps dropping brought us in, NOT MY GUTS!!!! That's a big deal. EVERY SINGLE moment, event, and day was impacted by my UC. Seriously it is as though the binds are gone. I was walking last night and pushing Violet thinking about how a year ago life was so different. I was ballooned from Prednisone. I hurt all over. My stepson B took Daughter #1 around because I wouldn't have lasted a block. This year I could have gone for hours. It was great. So liberating. A bonus---We have WAY too much candy left. It's going to be a food group for a while. My kids are damn cute!

I did full blown makeup to be a bearded lady... here's a before and an after----->

It was hard smiling in that thing. It was either Bearded lady or a Pig in a Blanket and it ended up being too warm to walk around wrapped in a blanket. I'm still not used to warm weather at Halloween. I subconsciously think I need the thermals under my costume!!
Here's me last year. I didn't even want my picture taken because the moon face was so bad and I was so ugly. I don't even recognize myself. How horrible that drug is. I think I packed on almost 40lbs too. I should have just put a bag over my fat head!!! =) And can you tell green is my favorite color. That's weird.

I have been thinking lately I want to do more in striving for IBD, ostomy and Pouch awareness. I don't know where to start. I think I'll contact my local CCFA. I really want to be out there as an advocate with my story and experience and make what we deal with and how it affects our lives a bit more center stage. It struck me the other day when I called my SSDI(Social Security Disability Insurance) attorney to update my file with my second surgery and how my meds changed and the woman at the office who I passed the message to said, "I'd ask what an Ostomy reversal is, but first I need to know what an ostomy is." It just took me aback. Is this stuff really that below the radar?? It shouldn't be. We are not that few and far between!!! Hello!!!! We all need to talk and get it out there. I'm sure at some point people were embarrassed to talk about breast cancer but now, there isn't one person who hasn't heard of breast cancer. And yet, they still spend millions every year on 'awareness'. Everyone is aware... in terms of that..it's time to just shift that money to research and treatment.
With IBD, there is little 'awareness'. Little understanding. Meds that rock our worlds and our bodies into worse situations. Other countries are leaping ahead with research and trials with intestinal transplants, fecal transplant etc... I would have been all on board for someone else's guts. Even one foot of colon would have to help right?? Ok, I'm off my soapbox and done contemplating biology and science I have to business contemplating. Have a great November 1st!!! I can not believe this year is winding down. One year ago I was dealing with a horrible flare of which I vowed to stay out of the Big H, extreme joint pain, Remicade infusions that weren't even working, 40mg of Prednisone(down from 70mg), a colonoscopy and CT scan and a cervical cancer scare and surgery to remove aggressive and quickly advancing precancerous cells. Last October and November were ROUGH!!! It just goes to show how much can change in a year. When you think you've hit the bottom, when the world is crumbling, if you just hang on and keep it together, you will look back a year later and amaze yourself at what you can overcome. We are all stronger than we think. We just have to give ourselves the chance to shine! Be well everyone. Thanks for reading. XOXO

My trip to the 716...

I can not believe I didn't blog about my trip in NY!!!
Wow- I must be losing it. Or lost it already. Whatever.
I had a really great time. NO issues with the TSA. I even put out a challenge by wearing my 'Ask me about my Ostomy' tshirt.

Nothing. Hmmmm..it was definitely a positive way to start the trip.
I was so worried about having issues with a body scanner or whatever and I didn't go through one at all. I don't think. Hmmm.. I was pretty distracted with all my gear, the stroller, Violet, taking shoes off etc... that I guess I didn't notice. I tend to get way worked up about stuff and then find out it was overkill. I guess I'd rather plan for the worst than get blindsided.
I spent most of my time with family. Saw my Gram a lot and her party was so much fun. I spent way too much time gabbing with people I hadn't seen and  didn't get in enough pics or take enough pics and I'm kicking myself. I tend to do that sometimes. I need to learn to shut up.
I made sure to get Tim Horton's coffee daily, I ate a lot of kick ass pizza that I am already craving, and had homemade sauce and meatballs three different days!!! Can't beat that.
My kids had a ball, especially Dillan. She was loving every minute with my female teenage cousins. She's ready to be 16 and it's scary. She loved her time with Sarina, Miranda and Alissa.
It was a really great time. I was really sad to leave everyone. I grew up really close with my cousins Toni and Marisa.The two of them and my sister and me were all the same ages and spent a lot of time together. Went to the same high school.  Your cousins are your first friends... glad I have them and we are still relatively close even living far away.
I was there 6 days which always seems like a lot until you are trying to fit people in, and go do this, see this etc... I probably needed ten. I had so much time until I had none. There were some people I didn't get much time with as schedules are crazy. Ten days may work a bit better next time.
I got to spend the day with my best friend on her birthday with all our girls. We had a fun outing at a pumpkin farm where chaos ensued as it always does with us. Then we tortured the diners at my favorite Greek restaurant with us and our five girls. Hahahaha.... I love seeing Dillan with Janelle's oldest Jillian. They are a year apart and are us. Seriously. They haven't seen each other in two years and were off together in 5 minutes like they were never apart. I absolutely love it!! It's those moments I miss and wish I could get back there more. It's just such a financial fee to fly my two kids and me to Buffalo. And then I need a rental car. I need to worry about who has the room to board us. I hate feeling like I am inconveniencing anyone. It was really great staying at my Aunt's though. She was wonderful and I had a great time talking and spending time with her.
I could never imagine living back there though. I can't handle the cold anymore. It is so beautiful in the fall so I'm glad we went when we did. I'm going to try to plan something maybe for the summer. I love my family, and miss them. It's important to me that my kids has time with them and have them in their lives even if we are 1500 miles away!
Violet was perfect on the flight home. Traveling with the girls by myself was a lot easier that I imagined. It helped that we had an empty seat with us the whole way back so Miss VIP got her own seat to sit in. Worked out perfectly!!
The ostomy was pretty well behaved. Weird that I no longer have it. All the Italian food made my nights a bit uncomfortable as those damn acidic tomatoes had me up a few times a night. I shared a room with the girls and OMG I barely slept. Violet snores, and Dillan talks in her her sleep. That meant I was a tired, hag every single day I was there. By the time I got back and went into the hospital the next day, I was ready for a nap!!
I think I finally finished laundry and unpacking from the trip a few days ago. Between going in the hospital the day after we returned and then recovery, I realized it had been a while since we got back and I never even blogged about it! Here are some pics. Missing everyone already!
XOXO

 My girls having pizza down my the river in Lewiston.

 My girls and me with my cousins and my Gramma at her party. Missing my sister.

 The girls on the plane on the way back to Dallas. Southwest was so good to us.

 At the pumpkin patch. Love fall in WNY.

My cousins Toni, Marisa, Dom and me. Miss these hang outs.

I can not believe I didn't blog about my trip in NY!!!
Wow- I must be losing it. Or lost it already. Whatever.
I had a really great time. NO issues with the TSA. I even put out a challenge by wearing my 'Ask me about my Ostomy' tshirt.

Nothing. Hmmmm..it was definitely a positive way to start the trip.
I was so worried about having issues with a body scanner or whatever and I didn't go through one at all. I don't think. Hmmm.. I was pretty distracted with all my gear, the stroller, Violet, taking shoes off etc... that I guess I didn't notice. I tend to get way worked up about stuff and then find out it was overkill. I guess I'd rather plan for the worst than get blindsided.
I spent most of my time with family. Saw my Gram a lot and her party was so much fun. I spent way too much time gabbing with people I hadn't seen and  didn't get in enough pics or take enough pics and I'm kicking myself. I tend to do that sometimes. I need to learn to shut up.
I made sure to get Tim Horton's coffee daily, I ate a lot of kick ass pizza that I am already craving, and had homemade sauce and meatballs three different days!!! Can't beat that.
My kids had a ball, especially Dillan. She was loving every minute with my female teenage cousins. She's ready to be 16 and it's scary. She loved her time with Sarina, Miranda and Alissa.
It was a really great time. I was really sad to leave everyone. I grew up really close with my cousins Toni and Marisa.The two of them and my sister and me were all the same ages and spent a lot of time together. Went to the same high school.  Your cousins are your first friends... glad I have them and we are still relatively close even living far away.
I was there 6 days which always seems like a lot until you are trying to fit people in, and go do this, see this etc... I probably needed ten. I had so much time until I had none. There were some people I didn't get much time with as schedules are crazy. Ten days may work a bit better next time.
I got to spend the day with my best friend on her birthday with all our girls. We had a fun outing at a pumpkin farm where chaos ensued as it always does with us. Then we tortured the diners at my favorite Greek restaurant with us and our five girls. Hahahaha.... I love seeing Dillan with Janelle's oldest Jillian. They are a year apart and are us. Seriously. They haven't seen each other in two years and were off together in 5 minutes like they were never apart. I absolutely love it!! It's those moments I miss and wish I could get back there more. It's just such a financial fee to fly my two kids and me to Buffalo. And then I need a rental car. I need to worry about who has the room to board us. I hate feeling like I am inconveniencing anyone. It was really great staying at my Aunt's though. She was wonderful and I had a great time talking and spending time with her.
I could never imagine living back there though. I can't handle the cold anymore. It is so beautiful in the fall so I'm glad we went when we did. I'm going to try to plan something maybe for the summer. I love my family, and miss them. It's important to me that my kids has time with them and have them in their lives even if we are 1500 miles away!
Violet was perfect on the flight home. Traveling with the girls by myself was a lot easier that I imagined. It helped that we had an empty seat with us the whole way back so Miss VIP got her own seat to sit in. Worked out perfectly!!
The ostomy was pretty well behaved. Weird that I no longer have it. All the Italian food made my nights a bit uncomfortable as those damn acidic tomatoes had me up a few times a night. I shared a room with the girls and OMG I barely slept. Violet snores, and Dillan talks in her her sleep. That meant I was a tired, hag every single day I was there. By the time I got back and went into the hospital the next day, I was ready for a nap!!
I think I finally finished laundry and unpacking from the trip a few days ago. Between going in the hospital the day after we returned and then recovery, I realized it had been a while since we got back and I never even blogged about it! Here are some pics. Missing everyone already!
XOXO

 My girls having pizza down my the river in Lewiston.

 My girls and me with my cousins and my Gramma at her party. Missing my sister.

 The girls on the plane on the way back to Dallas. Southwest was so good to us.

 At the pumpkin patch. Love fall in WNY.

My cousins Toni, Marisa, Dom and me. Miss these hang outs.

Pain with a capital P.

I just wanted an easy transition. Not getting it. The surgical pain has been nothing. The intestinal pain on the other hand has been intense. The majority of my small bowel wasn't used for months. Now, it is not happy to be put back to work. I am in pain. I can not describe the internal/maybe rectal? pain that occurs when something starts moving into that area. It paralyzes me for a few moments. So intense I feel like I may have an accident. Then is passes like it never happened. I can only assume that feeling is waste entering the newly formed pouch. I am still trying to figure out how things feel. Having to go #2 feels completely different now that I'm using different body parts to do it. So, trying to discern what is just intestinal pain vs the urge to go has been a challenge this last week. I end up hanging out in the shitter because I don't know if I'm in pain, or if I have to go. So obnoxious.
For those who are unfamiliar with the Jpouch, here's an image of what my insides basically look like now after all the surgeries are done.

I have to keep reminding myself that it generally takes up to a year for the Jpouch and system to adapt and become somewhat normal. I'm only 11 days post OP. Everything is a very slow adjustment process. My small intestine needs to start absorbing more water so my 'output' is more solid. Yeah, there's a nice visual. HOT!!
I'm completely out of my mind thinking I should be able to pick up my crazy life and run with it. It hurts to sit sometimes. 11 days is nothing. I need to snap out of it. I almost look normal, so I want to feel normal. Patience is not my strongest quality. It might not even be a quality I have.
 Here's pic from today of FrankenBelly. It looks so gross.

It's so scabby and itchy and it actually is very uncomfortable. Hopefully my wound care nurse can pop them out tomorrow. They are now to the point where it hurts because my body wants them gone. Ewwww.. and I'm totally a scab picker so you have no idea what kind of will power it is taking for me not to go after this thing. A lot. Tons. It's ridiculous how bad I want to pick at it.
So, I'm plugging away. There's a ton of stuff I want to do to this house that I haven't been able to because I've been sick for 100 years. Slowly putting my ideas to work so right now that is keeping me motivated. All my ideas cost money though, of which I am officially running out of all the cash I had stashed away. Looking at my bank account brings back the thoughts of now what and wondering what the hell I'm good at and where to go from here. So, I'll stop thinking about it for now. It gets me really upset. How am I 35 and feel so lost out of nowhere? Ok- I'm done.
New entryway wall unit soon, new paint for the downstairs bathroom and I plan on painting our island in the kitchen to change things up a bit. Fun stuff. I'll start buying the Lotto tickets anytime. I think Lotto winner sounds like a perfectly acceptable career!
Have a great day everyone.
XO

I just wanted an easy transition. Not getting it. The surgical pain has been nothing. The intestinal pain on the other hand has been intense. The majority of my small bowel wasn't used for months. Now, it is not happy to be put back to work. I am in pain. I can not describe the internal/maybe rectal? pain that occurs when something starts moving into that area. It paralyzes me for a few moments. So intense I feel like I may have an accident. Then is passes like it never happened. I can only assume that feeling is waste entering the newly formed pouch. I am still trying to figure out how things feel. Having to go #2 feels completely different now that I'm using different body parts to do it. So, trying to discern what is just intestinal pain vs the urge to go has been a challenge this last week. I end up hanging out in the shitter because I don't know if I'm in pain, or if I have to go. So obnoxious.
For those who are unfamiliar with the Jpouch, here's an image of what my insides basically look like now after all the surgeries are done.

I have to keep reminding myself that it generally takes up to a year for the Jpouch and system to adapt and become somewhat normal. I'm only 11 days post OP. Everything is a very slow adjustment process. My small intestine needs to start absorbing more water so my 'output' is more solid. Yeah, there's a nice visual. HOT!!
I'm completely out of my mind thinking I should be able to pick up my crazy life and run with it. It hurts to sit sometimes. 11 days is nothing. I need to snap out of it. I almost look normal, so I want to feel normal. Patience is not my strongest quality. It might not even be a quality I have.
 Here's pic from today of FrankenBelly. It looks so gross.

It's so scabby and itchy and it actually is very uncomfortable. Hopefully my wound care nurse can pop them out tomorrow. They are now to the point where it hurts because my body wants them gone. Ewwww.. and I'm totally a scab picker so you have no idea what kind of will power it is taking for me not to go after this thing. A lot. Tons. It's ridiculous how bad I want to pick at it.
So, I'm plugging away. There's a ton of stuff I want to do to this house that I haven't been able to because I've been sick for 100 years. Slowly putting my ideas to work so right now that is keeping me motivated. All my ideas cost money though, of which I am officially running out of all the cash I had stashed away. Looking at my bank account brings back the thoughts of now what and wondering what the hell I'm good at and where to go from here. So, I'll stop thinking about it for now. It gets me really upset. How am I 35 and feel so lost out of nowhere? Ok- I'm done.
New entryway wall unit soon, new paint for the downstairs bathroom and I plan on painting our island in the kitchen to change things up a bit. Fun stuff. I'll start buying the Lotto tickets anytime. I think Lotto winner sounds like a perfectly acceptable career!
Have a great day everyone.
XO

1 week down.... Now what?

Well, well... Here we are. So much was leading up to this. Anticipation, fear, excitement, anxiety... it was all rather anticlimactic in the end. Truly. I am so happy I have gone through it all, but I guess to put it simply, pooping again is just really nothing to jump for joy about! ;-) I am neither overly excited or relieved. Life just is... in a small way it is like I just got back on the highway after being on a really shitty rural detour for a few years. I guess I was expecting some mental fanfare or elation. Nothing. Woke up, stoma gone. Ok. Moving on.

Discharge day!!! ------->> Time to carry on....

I am one week post OP from my ileostomy reversal. It was a piece of cake. Honestly. After the pain and recovery from the colectomy, this was a breeze. The hardest part this past week was not eating for over 4 days in the hospital and the migraines and nausea it caused. Throwing up with nothing but a popsicle in your body in 4 days hurts. Bad. And all that abdominal contracting from throwing up made my incision and former stoma site hurt more than ever. I don't know how many of you have gone multiple days without eating or drinking but it is horrible. I've done it multiple times now. I ate Tuesday afternoon and got a popsicle on Friday evening. Not even ice chips in between. Torture. Then, I didn't eat actual food of substance (mashed potatoes, chicken noodle soup- the dreaded Low Res Diet) until Sunday. Seriously having GI issues and surgery is the worst for that stuff. They starve you. You go nuts. Luckily, those IV fluids kept me alive!!
Aside from that (NBD), the hospital stay was easy. The floor was quiet, I didn't have any nurse drama and didn't have to report anyone for not giving me my pain meds! SUCCESS!!!! I have 6 staples in my FrankenBelly. They are already itching like MAD!!! The pain has been tolerable. They gave me 10mg Norco and said to take 2 every 4-6 hours but I would be drooling on myself. I'm taking 5 every few hours and it is completely enough. I do have some soreness (not pain) doing that but I'd rather be functional and a little sore. I've had worse so I'll live. Here's some of me the night of surgery. ------>

 Obviously I'm drugged and happy?? Ok... guess I was feeling ok. Happy to be a JPoucher!

By this time, I am way puffy from fluid. Obviously zonked and may be in pain by the telltale canyons between my eyes that are screaming for botox. The oxygen is a good look.


Here's the incision the day after surgery. I laughed when I saw it.

Me, tired the day after ------->>>

As of today I have had some half-caff coffee, some pepsi, iced tea, mashed potatoes and gravy about 6 times, cooked ground turkey once, cooked carrots once, some french fries once, eggs twice, pancakes twice, bread, ice cream once, and a chicken sandwich once. That's been it in a week. I'll spice it up and maybe have macaroni tonight. ;-)
It will be so good that my health issues will no longer be a burden on my family. I'm out of commission and the entire house is crazy. Dillan is not good when I'm in the hospital. Mat stresses doing it all, while trying to work at home. Even during recovery now, I can't lift more than 10lbs so that obviously rules out the munchkin. Well, Mat has commitments that he can't bring a toddler to, and we have to debate leaving her here and what are the chances I'll have to carry her. And NATURALLY her separation anxiety has kicked in full force. She wants to be carried constantly. Nice timing, kid.... Nice.

So now what? That's been my question to myself. Now what. yes, I definitely have some recovering to do still, and adjusting to my brand new digestive system, but if this is as bad as it's going to be then I'm good. So now what? Sick has kinda been my thing. I never defined myself with it, or felt like that was what I was, but it ran my life whether I liked it or now. Now what? Who am I now? I need to get back to work. To get my greater sense of independence back. But what do I do? Go back to doing the unfulfilling thing I did for years just because? Should I have gone through all this just to go back and get another job? I don't wanna(said in whiny 2 year old speak). I still have that mindset of needing to find my direction. Retail companies are not it. It's thankless, and pointless, aside from getting really great product pretty cheap. Not to mention the schedule many times in not conducive to me happily being with my family. It's like I can't go back. Between being sick and getting royally screwed over by the last company who I bent over backwards for, I can't go back. So now what? I don't know. I'm going to take another class this spring and see how it goes. The science I've taken thus far has kicked my ass and I know how competitive the programs are. I just don't know if my life will allow me the time to be an A biology student. I don't want to set myself up for failure. So we'll see. Time away from my kids has to be worthwhile, fulfilling and productive. Being sick definitely taught me not to sit around and let days go by not living life. At the same time, I don't want to be in denial about what is possible and what I'm capable of. I'm a realist like that.
I don't know. I feel a kind of let down. A little lost. Experiences and time change you and you can't fit yourself back into the mold of your former self. I tend to think that's a good thing, but in some instances it can be frustrating. What would have once worked for me, doesn't now. It is almost a last resort to what clearly is a different expectation.
Now what? I'll let you know when I figure it out. In the meantime I'll be updating you on my recovery! I may venture out for a drive on my own today. We'll see.
Thanks for reading. XO

Well, well... Here we are. So much was leading up to this. Anticipation, fear, excitement, anxiety... it was all rather anticlimactic in the end. Truly. I am so happy I have gone through it all, but I guess to put it simply, pooping again is just really nothing to jump for joy about! ;-) I am neither overly excited or relieved. Life just is... in a small way it is like I just got back on the highway after being on a really shitty rural detour for a few years. I guess I was expecting some mental fanfare or elation. Nothing. Woke up, stoma gone. Ok. Moving on.

Discharge day!!! ------->> Time to carry on....

I am one week post OP from my ileostomy reversal. It was a piece of cake. Honestly. After the pain and recovery from the colectomy, this was a breeze. The hardest part this past week was not eating for over 4 days in the hospital and the migraines and nausea it caused. Throwing up with nothing but a popsicle in your body in 4 days hurts. Bad. And all that abdominal contracting from throwing up made my incision and former stoma site hurt more than ever. I don't know how many of you have gone multiple days without eating or drinking but it is horrible. I've done it multiple times now. I ate Tuesday afternoon and got a popsicle on Friday evening. Not even ice chips in between. Torture. Then, I didn't eat actual food of substance (mashed potatoes, chicken noodle soup- the dreaded Low Res Diet) until Sunday. Seriously having GI issues and surgery is the worst for that stuff. They starve you. You go nuts. Luckily, those IV fluids kept me alive!!
Aside from that (NBD), the hospital stay was easy. The floor was quiet, I didn't have any nurse drama and didn't have to report anyone for not giving me my pain meds! SUCCESS!!!! I have 6 staples in my FrankenBelly. They are already itching like MAD!!! The pain has been tolerable. They gave me 10mg Norco and said to take 2 every 4-6 hours but I would be drooling on myself. I'm taking 5 every few hours and it is completely enough. I do have some soreness (not pain) doing that but I'd rather be functional and a little sore. I've had worse so I'll live. Here's some of me the night of surgery. ------>

 Obviously I'm drugged and happy?? Ok... guess I was feeling ok. Happy to be a JPoucher!

By this time, I am way puffy from fluid. Obviously zonked and may be in pain by the telltale canyons between my eyes that are screaming for botox. The oxygen is a good look.


Here's the incision the day after surgery. I laughed when I saw it.

Me, tired the day after ------->>>

As of today I have had some half-caff coffee, some pepsi, iced tea, mashed potatoes and gravy about 6 times, cooked ground turkey once, cooked carrots once, some french fries once, eggs twice, pancakes twice, bread, ice cream once, and a chicken sandwich once. That's been it in a week. I'll spice it up and maybe have macaroni tonight. ;-)
It will be so good that my health issues will no longer be a burden on my family. I'm out of commission and the entire house is crazy. Dillan is not good when I'm in the hospital. Mat stresses doing it all, while trying to work at home. Even during recovery now, I can't lift more than 10lbs so that obviously rules out the munchkin. Well, Mat has commitments that he can't bring a toddler to, and we have to debate leaving her here and what are the chances I'll have to carry her. And NATURALLY her separation anxiety has kicked in full force. She wants to be carried constantly. Nice timing, kid.... Nice.

So now what? That's been my question to myself. Now what. yes, I definitely have some recovering to do still, and adjusting to my brand new digestive system, but if this is as bad as it's going to be then I'm good. So now what? Sick has kinda been my thing. I never defined myself with it, or felt like that was what I was, but it ran my life whether I liked it or now. Now what? Who am I now? I need to get back to work. To get my greater sense of independence back. But what do I do? Go back to doing the unfulfilling thing I did for years just because? Should I have gone through all this just to go back and get another job? I don't wanna(said in whiny 2 year old speak). I still have that mindset of needing to find my direction. Retail companies are not it. It's thankless, and pointless, aside from getting really great product pretty cheap. Not to mention the schedule many times in not conducive to me happily being with my family. It's like I can't go back. Between being sick and getting royally screwed over by the last company who I bent over backwards for, I can't go back. So now what? I don't know. I'm going to take another class this spring and see how it goes. The science I've taken thus far has kicked my ass and I know how competitive the programs are. I just don't know if my life will allow me the time to be an A biology student. I don't want to set myself up for failure. So we'll see. Time away from my kids has to be worthwhile, fulfilling and productive. Being sick definitely taught me not to sit around and let days go by not living life. At the same time, I don't want to be in denial about what is possible and what I'm capable of. I'm a realist like that.
I don't know. I feel a kind of let down. A little lost. Experiences and time change you and you can't fit yourself back into the mold of your former self. I tend to think that's a good thing, but in some instances it can be frustrating. What would have once worked for me, doesn't now. It is almost a last resort to what clearly is a different expectation.
Now what? I'll let you know when I figure it out. In the meantime I'll be updating you on my recovery! I may venture out for a drive on my own today. We'll see.
Thanks for reading. XO

Reflection

<p>In less than 3 hours I'll be checking into the hospital again! I'm just laying here reflecting on everything that's gone on. Wondering what to do with all these ostomy supplies. I'm kind of feeling a little out of body... I can't believe it's almost done. I can't believe I'll be pooping again! Oh man!! I feel so normal with my stoma now and in a few hours SS will be gone. I feel like I'm getting on another roller coaster of unknowns. I definitely feel bittersweet about today. Excited about some closure and the end of this journey but anxious that this could open another round of issues. It's always possible. Hopefully not but you never know. I'm going to pack my bag and get ready to go.
I'm not scared. I don't understand that fear. I have more fear about it not being over. Hoping this is it. FrankenBelly is getting the hook up today. Pics and updates to follow! Have a great day everyone! Catch ya on the flipside.....guts intact!! Gutsy broad is ready to do this!

<p>In less than 3 hours I'll be checking into the hospital again! I'm just laying here reflecting on everything that's gone on. Wondering what to do with all these ostomy supplies. I'm kind of feeling a little out of body... I can't believe it's almost done. I can't believe I'll be pooping again! Oh man!! I feel so normal with my stoma now and in a few hours SS will be gone. I feel like I'm getting on another roller coaster of unknowns. I definitely feel bittersweet about today. Excited about some closure and the end of this journey but anxious that this could open another round of issues. It's always possible. Hopefully not but you never know. I'm going to pack my bag and get ready to go.
I'm not scared. I don't understand that fear. I have more fear about it not being over. Hoping this is it. FrankenBelly is getting the hook up today. Pics and updates to follow! Have a great day everyone! Catch ya on the flipside.....guts intact!! Gutsy broad is ready to do this!

35 and so, so wise from new lessons.

Hello internet friends....
It has been some time. I have had a lot going on and really have had nothing I felt would be slightly entertaining.
I turned 35 the other day. I have stopped counting. I will be 35 next year too. I have found my first grey hair. The fine lines around my eyes are more prominent than ever, despite my religious use of creams and potions and ALWAYS wearing sunglasses so I don't squint. I also wear them because I feel very incognito. You know- I have to throw off the paparazzi that stalk me. ;-)
I don't really like getting older. Well, I don't mind the number changing, but I'm not ready to be old. I'm not ready for anti-aging creams and fine lines. I'm only 25, 30, 35.... And boom, there they are. It doesn't help that I feel like I have lost a few years to UC. I lost my early 30s. To me those are prim years. You are not 'just' in your 20s to those older than you who still see you as a child no matter how much you've accomplished. And you are still far enough from 40 to still be a little stupid, a little crazy and not have people look at you like you don't have your life together because you are 40. You are close to your 20-something body. Your 20-something skin. Instead of having all that wonderful stuff, I had horrible skin and weight gain from prednisone. Moon face, hair falling out in clumps, arthritis, blood transfusions, 10 pills a day and a dozen or so other side effects from the many different meds I was on to try to get this shit (shitting?) under control. Perfect prime real estate of life in the toilet. Down the toilet. In more ways than one.
I know there are people older than me who will say I'm ONLY 35...I know, I know.... but in this moment I want those years back. I can't count how many times I told my daughter 'No' because I was in too much pain, or too much fatigue to play with her. Or that I couldn't go to the park because I was in the freaking bathroom AGAIN, 30 times a day. Up to 45 minutes at a time. In pain. Crying. I remember moments so bad I thought I was dying. I had told my Hubs, I think I'm dying. Begging, crying, wishing it would stop. And my little girl was so disappointed. Every time. Now she wants to know if she'll need her large intestine out. I tell her I hope not. I don't want to just say no and make a false promise. She's 7 now and recalls me always being sick. Missing me when I was in the hospital all those times. Remembering I was always too tired to play. I can't erase that. That bothers me. I call bullshit. Not for me, but for her. No kid should have to deal with that crap. Here's me and my oldest at dinner the other night. She's happy I can actually go to restaurants now and not watch everyone eat or spend it in the WC(water closet). I am too. ---->

In the last few days I've learned that a delicious filet mignon is not worth it. My body is not friends with red meat anymore. My delicious and expensive Birthday dinner made me extremely nauseous for hours. I hadn't felt like that since before surgery. So, no more red meat for me. Except McDonald's because I'm sure it's not real meat and for whatever reason it's the only fast food that has never made me sick in my life.
I've learned that a real, true best friend is hard to come by. One you have 'take to the grave' shit with, and can still laugh about the stuff you did at 15, when you are 35. Laugh until your stomach hurts about how dumb you were, and then five minutes later discuss something mature, like the dumb stuff you did at 30. ;-)
On the flip, I've learned that when you go through something and feel alone for so long, and then find a group of people who know your pain (online, who you'll probably never meet), you have a bond and a friendship that is truly open and non-judging. I've 'met' such great people on some of the Facebook support pages I've found that have made such a difference. It changed me from feeling isolated in my struggle, to wanting to speak out and inform and educate. That is such a great thing. For all the crap that is out there on the internet, it is so amazing when something positive and life impacting, comes from it.
Oh! I took a new 'hidden ostomy' picture from my night out on my Birthday.

 No one would ever think... and I wear whatever I want. As we've seen in my "I have no shame" pictures.
I have also learned that it is possible to have new, wonderful people come into your life in your 30s. Moving was difficult because it is hard to develop new, trusting friendships as you get older, especially because most of the time I have spent in Texas I have been sick. Luckily, my daughter was in Kinder with an awesome little girl who became her friend, and the extension of that is I am lucky to count her mom, Samara, as a friend now. Her kids are pretty fantastic too.

While I was changing my wafer yesterday I had a thought. I was looking at my abdomen and it occurred to me that I don't even notice the stoma anymore. It doesn't jump out at me anymore. It's just there. And then I realized in 2 weeks, I would be having my reversal and my body as I had gotten used to, would change again. It will be less gutting, more putting back together. FrankenBelly getting reworked. So I took a picture. Truly, in days the stoma will be gone. And I got a little sad. I went from being horrified to being sad in a few months???!! What? It's true. My stoma is generally easy. Yes, it can be a pain in the ass (not really, because that is physically impossible) but it's easy. It's smelly when I change the bag (like, whoa) but I have gotten use to the ease of it, and the never needing to poop part of it. That, my friends, is absolute heaven after years of dying a little 30 times a day.
Anyway, I got sad because now I have to get used to something else. Another recovery, another adjustment. Possible J pouch issues, and yes, possible pooping issues.
I will fight through it though... because at this point in life I am used to things most people can't imagine. I'm used to unbearable pain. Uncomfortable tests on modesty erasing body parts. I'm USED to it. No one should ever have to get used to it. My dad was complaining about his ONCE EVERY TEN YEAR Colonoscopy. Yeah- I couldn't even say welcome to my world because I'm pretty sure at one point I had 3 in less than a year. Once every ten!? Perfect!!
So, here's my pic of the abdomen I was worried about hating and then hating and now loving----->

I love my scar. I'm going to love my stoma scar too. I'm winning the war, not just the battle. It was a losing battle until my colectomy. The second my colon came out, I won. Life has been crazy. I think this coming year will be the best I've seen in a very long time. Looking forward to some good stuff. Two weeks from today is my reversal. Let's hope it goes without a hitch. So weird. I'm only going to have a stoma two more weeks. Funny how we adapt and things that seemed so overwhelming and dramatic become normal. I have a stoma. It's normal. Wow- I'm so enlightened now that I'm 35. =)

Thanks for reading.
Gutsy is off to bed.
XO

Hello internet friends....
It has been some time. I have had a lot going on and really have had nothing I felt would be slightly entertaining.
I turned 35 the other day. I have stopped counting. I will be 35 next year too. I have found my first grey hair. The fine lines around my eyes are more prominent than ever, despite my religious use of creams and potions and ALWAYS wearing sunglasses so I don't squint. I also wear them because I feel very incognito. You know- I have to throw off the paparazzi that stalk me. ;-)
I don't really like getting older. Well, I don't mind the number changing, but I'm not ready to be old. I'm not ready for anti-aging creams and fine lines. I'm only 25, 30, 35.... And boom, there they are. It doesn't help that I feel like I have lost a few years to UC. I lost my early 30s. To me those are prim years. You are not 'just' in your 20s to those older than you who still see you as a child no matter how much you've accomplished. And you are still far enough from 40 to still be a little stupid, a little crazy and not have people look at you like you don't have your life together because you are 40. You are close to your 20-something body. Your 20-something skin. Instead of having all that wonderful stuff, I had horrible skin and weight gain from prednisone. Moon face, hair falling out in clumps, arthritis, blood transfusions, 10 pills a day and a dozen or so other side effects from the many different meds I was on to try to get this shit (shitting?) under control. Perfect prime real estate of life in the toilet. Down the toilet. In more ways than one.
I know there are people older than me who will say I'm ONLY 35...I know, I know.... but in this moment I want those years back. I can't count how many times I told my daughter 'No' because I was in too much pain, or too much fatigue to play with her. Or that I couldn't go to the park because I was in the freaking bathroom AGAIN, 30 times a day. Up to 45 minutes at a time. In pain. Crying. I remember moments so bad I thought I was dying. I had told my Hubs, I think I'm dying. Begging, crying, wishing it would stop. And my little girl was so disappointed. Every time. Now she wants to know if she'll need her large intestine out. I tell her I hope not. I don't want to just say no and make a false promise. She's 7 now and recalls me always being sick. Missing me when I was in the hospital all those times. Remembering I was always too tired to play. I can't erase that. That bothers me. I call bullshit. Not for me, but for her. No kid should have to deal with that crap. Here's me and my oldest at dinner the other night. She's happy I can actually go to restaurants now and not watch everyone eat or spend it in the WC(water closet). I am too. ---->

In the last few days I've learned that a delicious filet mignon is not worth it. My body is not friends with red meat anymore. My delicious and expensive Birthday dinner made me extremely nauseous for hours. I hadn't felt like that since before surgery. So, no more red meat for me. Except McDonald's because I'm sure it's not real meat and for whatever reason it's the only fast food that has never made me sick in my life.
I've learned that a real, true best friend is hard to come by. One you have 'take to the grave' shit with, and can still laugh about the stuff you did at 15, when you are 35. Laugh until your stomach hurts about how dumb you were, and then five minutes later discuss something mature, like the dumb stuff you did at 30. ;-)
On the flip, I've learned that when you go through something and feel alone for so long, and then find a group of people who know your pain (online, who you'll probably never meet), you have a bond and a friendship that is truly open and non-judging. I've 'met' such great people on some of the Facebook support pages I've found that have made such a difference. It changed me from feeling isolated in my struggle, to wanting to speak out and inform and educate. That is such a great thing. For all the crap that is out there on the internet, it is so amazing when something positive and life impacting, comes from it.
Oh! I took a new 'hidden ostomy' picture from my night out on my Birthday.

 No one would ever think... and I wear whatever I want. As we've seen in my "I have no shame" pictures.
I have also learned that it is possible to have new, wonderful people come into your life in your 30s. Moving was difficult because it is hard to develop new, trusting friendships as you get older, especially because most of the time I have spent in Texas I have been sick. Luckily, my daughter was in Kinder with an awesome little girl who became her friend, and the extension of that is I am lucky to count her mom, Samara, as a friend now. Her kids are pretty fantastic too.

While I was changing my wafer yesterday I had a thought. I was looking at my abdomen and it occurred to me that I don't even notice the stoma anymore. It doesn't jump out at me anymore. It's just there. And then I realized in 2 weeks, I would be having my reversal and my body as I had gotten used to, would change again. It will be less gutting, more putting back together. FrankenBelly getting reworked. So I took a picture. Truly, in days the stoma will be gone. And I got a little sad. I went from being horrified to being sad in a few months???!! What? It's true. My stoma is generally easy. Yes, it can be a pain in the ass (not really, because that is physically impossible) but it's easy. It's smelly when I change the bag (like, whoa) but I have gotten use to the ease of it, and the never needing to poop part of it. That, my friends, is absolute heaven after years of dying a little 30 times a day.
Anyway, I got sad because now I have to get used to something else. Another recovery, another adjustment. Possible J pouch issues, and yes, possible pooping issues.
I will fight through it though... because at this point in life I am used to things most people can't imagine. I'm used to unbearable pain. Uncomfortable tests on modesty erasing body parts. I'm USED to it. No one should ever have to get used to it. My dad was complaining about his ONCE EVERY TEN YEAR Colonoscopy. Yeah- I couldn't even say welcome to my world because I'm pretty sure at one point I had 3 in less than a year. Once every ten!? Perfect!!
So, here's my pic of the abdomen I was worried about hating and then hating and now loving----->

I love my scar. I'm going to love my stoma scar too. I'm winning the war, not just the battle. It was a losing battle until my colectomy. The second my colon came out, I won. Life has been crazy. I think this coming year will be the best I've seen in a very long time. Looking forward to some good stuff. Two weeks from today is my reversal. Let's hope it goes without a hitch. So weird. I'm only going to have a stoma two more weeks. Funny how we adapt and things that seemed so overwhelming and dramatic become normal. I have a stoma. It's normal. Wow- I'm so enlightened now that I'm 35. =)

Thanks for reading.
Gutsy is off to bed.
XO

Chaos, whirlwind days and stress.

It hasn't been the greatest few days. I think the scar tissue I have internally is causing me pain. It's very weird, and it comes and goes. Stabbing pain that is not fun. All I can figure is that it's scar tissue. Adhesions maybe? Plus, the raw skin around my stoma is back with a mission to make me miserable. Trying to change my wafer the second I feel any itching and burning that indicates leaking. The eakin seals are randomly acting differently than they have in the past. Melting quickly and coming up and out into my bag. I may have to go back to paste which isn't my first choice because of the alcohol in it and it burns like a bitch.
SO between the raw skin pain and the random internal pain, I don't want to do anything. And today is Monday and Monday's are going to suck. Dillan is home from school at 320. She has swim from 530-6 and then Girl Scouts immediately following swim until 730pm. And I mean immediate. As in, changing in the car and going to the meeting wet. UGh--- fun.. and then I find something random to do, probably with Violet, to kill time until she's done. It's just far enough away from home to not make driving home worth it. In the meantime today, I have returns to make. You know what- screw it. I'll do all that crap while she's at Scouts. Why bother Taxi driving around twice today. Perfect! Now I can be a slug and lay around. Excellent problem solving Lisa. EXCELLENT!! =)
Still am not prepared for the trip I'm taking with two kids in 15 days. Clothes need to be bought for everyone because they are in fall temps in NY. Kids have nothing yet in terms of jeans etc... It's still in the 90s here.
I am still on a hunt for a pack N Play for VIP to sleep in while I'm up there. I may need to put out a request via FB to find one. I like things to be all set when I get there. I can't stand things being hectic and chaotic. It makes me nuts. And I still have to find something cute for my Gram's party, as nothing fits me AGAIN. I change weights way too much. I need to keep an entire size run of everything in my closet. Hopefully after surgery in October my weight will finally stop fluctuating and I can get into an exercise routine. Yeah- great plan. I want to go back to work after I've recovered so we'll see. Between Dillan's activities, Mat's teaching and training, that will be interesting. Part time here I come. I guess that is probably best since I haven't had to be full time since June 2010. I will need to readjust. My body will have to readjust. Fun times ahead.
In the meantime, I'm taking an online course I need so it's not too bad with consuming time. I got a 95 on my first assignment so if that's any indication, this should go well.
Completely hit my supply amount for bags. I can't reorder until the 15th. Not smart. So I have some minibags that last like 2 hours at most and those are going fast. It looks like I'll be going back to gross draining pouches until the 15th. I need to have all my supplies ready to go because I wil be over packing them for my trip. It's not like I can run to CVS and pick up Eakin seals!! So, let's hope I pack enough and have no issues. Fingers crossed!!!
My stoma is no longer SS for stupid stoma...it is SS for shrinking stoma. This thing just keeps getting smaller. The 3/4 inch stoma opening is too big and I think that's what is causing my issues. Just requested some wafers that are smaller. Hopefully they'll get here fast! If those work I'll have to order the new size and send back the two boxes of wafers I just got shipped. The fun never ends people! NEVER!!! =)

Just wanted to take a moment to say that I really am hands down, a kick ass mom. Why you ask? Well, when Dillan was around 12-18 months, I taught her how to sake her butt on command by saying 'Shake your booty". Well, it was not a fluke, ladies and gents. Violet now stands and shakes her money maker on command when you say, "Shake your booty". Yes, I am so proud. Just beaming. ;-) Let's hope there are no poles in their future. Hee hee.
On that note- I'm going to attempt to take my little booty shaker to lunch. Mat is a workout addict and went to the gym, (A new gym. In addition to his evening training and teaching 2 days), so she's going to be my lunch date. I need someone to set a fire under my ass after this next surgery. I feel like a weakling. I hate that. And the bingo arm is out of control! Holy crap.
Ok.. I need to eat! I am a skinnyfat girl after all!
Have a great day! Thanks for reading! XO

It hasn't been the greatest few days. I think the scar tissue I have internally is causing me pain. It's very weird, and it comes and goes. Stabbing pain that is not fun. All I can figure is that it's scar tissue. Adhesions maybe? Plus, the raw skin around my stoma is back with a mission to make me miserable. Trying to change my wafer the second I feel any itching and burning that indicates leaking. The eakin seals are randomly acting differently than they have in the past. Melting quickly and coming up and out into my bag. I may have to go back to paste which isn't my first choice because of the alcohol in it and it burns like a bitch.
SO between the raw skin pain and the random internal pain, I don't want to do anything. And today is Monday and Monday's are going to suck. Dillan is home from school at 320. She has swim from 530-6 and then Girl Scouts immediately following swim until 730pm. And I mean immediate. As in, changing in the car and going to the meeting wet. UGh--- fun.. and then I find something random to do, probably with Violet, to kill time until she's done. It's just far enough away from home to not make driving home worth it. In the meantime today, I have returns to make. You know what- screw it. I'll do all that crap while she's at Scouts. Why bother Taxi driving around twice today. Perfect! Now I can be a slug and lay around. Excellent problem solving Lisa. EXCELLENT!! =)
Still am not prepared for the trip I'm taking with two kids in 15 days. Clothes need to be bought for everyone because they are in fall temps in NY. Kids have nothing yet in terms of jeans etc... It's still in the 90s here.
I am still on a hunt for a pack N Play for VIP to sleep in while I'm up there. I may need to put out a request via FB to find one. I like things to be all set when I get there. I can't stand things being hectic and chaotic. It makes me nuts. And I still have to find something cute for my Gram's party, as nothing fits me AGAIN. I change weights way too much. I need to keep an entire size run of everything in my closet. Hopefully after surgery in October my weight will finally stop fluctuating and I can get into an exercise routine. Yeah- great plan. I want to go back to work after I've recovered so we'll see. Between Dillan's activities, Mat's teaching and training, that will be interesting. Part time here I come. I guess that is probably best since I haven't had to be full time since June 2010. I will need to readjust. My body will have to readjust. Fun times ahead.
In the meantime, I'm taking an online course I need so it's not too bad with consuming time. I got a 95 on my first assignment so if that's any indication, this should go well.
Completely hit my supply amount for bags. I can't reorder until the 15th. Not smart. So I have some minibags that last like 2 hours at most and those are going fast. It looks like I'll be going back to gross draining pouches until the 15th. I need to have all my supplies ready to go because I wil be over packing them for my trip. It's not like I can run to CVS and pick up Eakin seals!! So, let's hope I pack enough and have no issues. Fingers crossed!!!
My stoma is no longer SS for stupid stoma...it is SS for shrinking stoma. This thing just keeps getting smaller. The 3/4 inch stoma opening is too big and I think that's what is causing my issues. Just requested some wafers that are smaller. Hopefully they'll get here fast! If those work I'll have to order the new size and send back the two boxes of wafers I just got shipped. The fun never ends people! NEVER!!! =)

Just wanted to take a moment to say that I really am hands down, a kick ass mom. Why you ask? Well, when Dillan was around 12-18 months, I taught her how to sake her butt on command by saying 'Shake your booty". Well, it was not a fluke, ladies and gents. Violet now stands and shakes her money maker on command when you say, "Shake your booty". Yes, I am so proud. Just beaming. ;-) Let's hope there are no poles in their future. Hee hee.
On that note- I'm going to attempt to take my little booty shaker to lunch. Mat is a workout addict and went to the gym, (A new gym. In addition to his evening training and teaching 2 days), so she's going to be my lunch date. I need someone to set a fire under my ass after this next surgery. I feel like a weakling. I hate that. And the bingo arm is out of control! Holy crap.
Ok.. I need to eat! I am a skinnyfat girl after all!
Have a great day! Thanks for reading! XO

Doubt and procrastination. A nasty cocktail.

I've been meaning to sit down and write for a few days but for some reason have had zero energy. So sluggish. Not sure what it is. Went off my Lomotil because I was sick of being out of it and stoned all day but my body went right back to high liquid output. My lightheadedness came back and my bags were filling nonstop and it was annoying. So- back to the Lomotil <Sigh>.
I scheduled my reversal surgery for October 5th. My surgeon said everything looks awesome. By the time October comes around I should have very little chance of adhesions and no inflammation left which will decrease the chance of complications. It should take him about 90 minutes maximum, ideally. Maybe 4 days in the hospital depending on how long it takes for my intestines to 'wake up'. That means poop to all my non-IBD friends. Guts are very sluggish after surgery, after prep. For me, most of my small intestines haven't been used since May 20th. It's going to be interesting. Very excited. I put in what should be my last order of ostomy supplies today. It will be nice to have that drawer back in my bathroom. As excited as I am about surgery, there is this little part of me that thinks, "Maybe I should just keep the stoma". Weird huh?! It's just that, I know what to expect with the stoma. I've gotten used to it. We understand each other now. I'm not pissed off at it anymore because our relationship has grown over the last 3+ months.  =) So yes, there's a part of me that is slightly intimidated by the unknown of the J pouch. I know it's going to be an adjustment. Big time. More importantly, completely inconvenient to poop again! Hahahaha..seriously. Totally weird. So I'm kinda struggling with that one. I don't know. Excited and a little anxious. Hoping it doesn't throw my life into a tizzy again. So, I'm basically counting down. It'll come at a good time too. Right about when I need to start wearing jeans and pants. Right now, summer dresses are easy and accomodate the wafer. Buttoning pants over it is tough, and searching for pants that sit low enough to be under it while not having my ass hang out is a challenge. I'm not a fan of the escaping butt crack. Trashy!!
My skin was doing so awesome... right now I'm just dealing with it being raw. It's weeping through the adhesive. I think it's because I've been slacking on blow drying the adhesive after showering. My skin staying wet under it is not creating a good environment. Ugh. So I'll be changing it daily for a few days to hopefully get rid of the inflammation. A few months ago I would have cried over this. Now- I have my life back so these little issues are a pretty fair trade off!!
I'm ok with my stoma. Looking forward to see how this J pouch works- but for now, life is good. No complaints. If this is how life is with no colon, I'm good!! And happy! =)

Loving bright color block denim for fall. So far I've bought this blue, red, green and I also got a grey leopard print! Obnoxious! Love it!! =) Now if only this hell fire weather would knock it off. 100 degrees still! Make it stop!! Ugh.
Dillan has her first swim team practice today!!! So exciting. She better love it because the check already cleared! ;-)
I'm counting down to flying to NY with the girls at the end of this month. Nervous about how Violet is going to be. I had always bought Dillan a seat when she was young and just had her in her carseat in the plane. This time I didn't and she's NOT going to be happy having to sit on laps. This kid loves to GO... Every day I get closer is a day I get more stressed about it. I'm going to be one of THOSE parents. I know it. I can already feel the eyes burning holes in me because my 14 month old is going to be a total spaz! I want to fast forward through that flight. I'm not even that stressed about my ostomy and the TSA compared to Violet. I'm sure it will make for a great story. :-/

For some odd reason, the days go by FASTER now that the kids are in school. It's already noon. It feels like I just woke up! I've accomplished nothing but a shower. I have about 5 crafts I keep 'meaning' to do but just haven't done it. Ridiculous. I'm such a procrastinator. Not sure why... nothing I have to do is stressful or causes anxiety. I've always been this way. Even with easy stuff. I'm an oddball.
Hope everyone had a great long Labor Day weekend.

I stumbled across this quote from Roald Dahl and I'll leave you with it---->
One of my favorite childhood authors.
"...if you have good thoughts they will shine out of your face like sunbeams and you will always look lovely.” 

Thanks for reading. Feel free to share! XO

I've been meaning to sit down and write for a few days but for some reason have had zero energy. So sluggish. Not sure what it is. Went off my Lomotil because I was sick of being out of it and stoned all day but my body went right back to high liquid output. My lightheadedness came back and my bags were filling nonstop and it was annoying. So- back to the Lomotil <Sigh>.
I scheduled my reversal surgery for October 5th. My surgeon said everything looks awesome. By the time October comes around I should have very little chance of adhesions and no inflammation left which will decrease the chance of complications. It should take him about 90 minutes maximum, ideally. Maybe 4 days in the hospital depending on how long it takes for my intestines to 'wake up'. That means poop to all my non-IBD friends. Guts are very sluggish after surgery, after prep. For me, most of my small intestines haven't been used since May 20th. It's going to be interesting. Very excited. I put in what should be my last order of ostomy supplies today. It will be nice to have that drawer back in my bathroom. As excited as I am about surgery, there is this little part of me that thinks, "Maybe I should just keep the stoma". Weird huh?! It's just that, I know what to expect with the stoma. I've gotten used to it. We understand each other now. I'm not pissed off at it anymore because our relationship has grown over the last 3+ months.  =) So yes, there's a part of me that is slightly intimidated by the unknown of the J pouch. I know it's going to be an adjustment. Big time. More importantly, completely inconvenient to poop again! Hahahaha..seriously. Totally weird. So I'm kinda struggling with that one. I don't know. Excited and a little anxious. Hoping it doesn't throw my life into a tizzy again. So, I'm basically counting down. It'll come at a good time too. Right about when I need to start wearing jeans and pants. Right now, summer dresses are easy and accomodate the wafer. Buttoning pants over it is tough, and searching for pants that sit low enough to be under it while not having my ass hang out is a challenge. I'm not a fan of the escaping butt crack. Trashy!!
My skin was doing so awesome... right now I'm just dealing with it being raw. It's weeping through the adhesive. I think it's because I've been slacking on blow drying the adhesive after showering. My skin staying wet under it is not creating a good environment. Ugh. So I'll be changing it daily for a few days to hopefully get rid of the inflammation. A few months ago I would have cried over this. Now- I have my life back so these little issues are a pretty fair trade off!!
I'm ok with my stoma. Looking forward to see how this J pouch works- but for now, life is good. No complaints. If this is how life is with no colon, I'm good!! And happy! =)

Loving bright color block denim for fall. So far I've bought this blue, red, green and I also got a grey leopard print! Obnoxious! Love it!! =) Now if only this hell fire weather would knock it off. 100 degrees still! Make it stop!! Ugh.
Dillan has her first swim team practice today!!! So exciting. She better love it because the check already cleared! ;-)
I'm counting down to flying to NY with the girls at the end of this month. Nervous about how Violet is going to be. I had always bought Dillan a seat when she was young and just had her in her carseat in the plane. This time I didn't and she's NOT going to be happy having to sit on laps. This kid loves to GO... Every day I get closer is a day I get more stressed about it. I'm going to be one of THOSE parents. I know it. I can already feel the eyes burning holes in me because my 14 month old is going to be a total spaz! I want to fast forward through that flight. I'm not even that stressed about my ostomy and the TSA compared to Violet. I'm sure it will make for a great story. :-/

For some odd reason, the days go by FASTER now that the kids are in school. It's already noon. It feels like I just woke up! I've accomplished nothing but a shower. I have about 5 crafts I keep 'meaning' to do but just haven't done it. Ridiculous. I'm such a procrastinator. Not sure why... nothing I have to do is stressful or causes anxiety. I've always been this way. Even with easy stuff. I'm an oddball.
Hope everyone had a great long Labor Day weekend.

I stumbled across this quote from Roald Dahl and I'll leave you with it---->
One of my favorite childhood authors.
"...if you have good thoughts they will shine out of your face like sunbeams and you will always look lovely.” 

Thanks for reading. Feel free to share! XO

Just some bitching.. I'm fired up!

I'm feeling crabby today so I'm going to do some bitching.

First of all, got a second denial letter from SSDI. It is a good thing they aren't a bank because you'd never be able to withdraw your own money. Once again they said that in all the time I was sick, being hospitalized, on tons of meds, getting blood transfusions, in severe pain, in the bathroom 20+ times a day, and requiring an entire organ to be removed, I should have had no problem maintaining FT work. And as long as I was following my doctors orders I was A okay. My doctor's orders weren't working, which is why the doctor's decided I needed to be gutted. Soooooo.... Riiiiggghhhtttttt... Delusional mother F*ckers. Mind you, I'm not applying for open ended disability. My attorney is seeking a closed window payment of the time I could not work from my first hospitalization until when I recover from this last surgery. I am well aware that I will be healthy enough to work after my recovery. In fact, you bureaucratic assholes, I welcome it. But don't tell me that I could have been working all this time no problem. I couldn't have and I didn't. But it's fine... you just hang on to MY MONEY that I have been paying into since I was 16 when I got my first job. You know, paying into it in case I ever need it. Like RIGHT NOW!!!!!!!! Yes, instead keep denying me...so now we need to appeal it, and go to court and take up court time and government employee time to go to court. That sounds like a much more efficient plan than JUST GIVING ME A SHORT TERM stipend of MY MONEY because I was/is unable to work due to a disease. Healthy people do not need organs removed in order to improve their life and thrive. AARRGHHHH...... So irritated. Seriously. HEADS UP THEIR ASSES.

My second rant comes a discussions going on in a Facebook group I'm in for Crohn's/Colitis. Basically it's discussing how people think they can give advice on how we IBD'ers can 'cure' ourselves and get rid of our symptoms. Now, that being said, we all know the average person is basically uninformed about general biology. The reason I make that statement is because it is proven to me again and again on a daily basis. People are ignorant. If they weren't, companies wouldn't be making millions of dollars off of people for quick gimmick weight loss pills/diets, or fat burning cream you rub on at night. Yeah, your body just doesn't work that way. So, how is it, that the average person suddenly becomes a digestive expert when you have IBD? Hmmmm.... that's weird? Oh, I need to lose weight and my disease will go away? Oh, I need to exercise more and my disease will go away? Oh, I need to watch my diet and my disease will go away? Such an interesting school of thought. But, ahh no. My disease went away when they TOOK THE DISEASED ORGAN OUT!!!!!!! People- keep your mouths shut about shit you know nothing about. You are not well read on autoimmune diseases (and NO they are NOT the same thing as AIDS so that's a great response when I tell you I have an autoimmune disease. Clever). Go back to being experts on the Kardashians, and 'Toddlers and Tiaras'. My GI spent years trying to get my disease under control with no success. But suddenly, you, who probably doesn't know the first thing about how your colon works, is going to give advice on my illness. The illness I'm living with, and have spent countless days reading and researching what was going on with my body. Reading about and trying every drug out there, who's side effects generally are worse than me dealing with UC. Yes, I'm sure if I ate more veggies I'd be swell. Too bad roughage is like the archenemy of IBD. But thanks! I'll consider your suggestion of green leafy veggies that will tear the shit out of my insides and make me run to the bathroom in 20 minutes where I will spend 3 days bleeding out my ass from your salad suggestion. Yes, by all means, preach it. It might work. Doubtful. You know what WOULD work?! If you listened to what an IBD'er is saying. If you didn't cut them off and say you understand b/c Taco Bell makes you shit your brains out. And maybe, just maybe, if you gave half a shit, you'd do some reading. Get some general knowledge about the human body. It is actually quite helpful to know how your body works, sick or not. But hey, what do I know. I just live it.

That is all.. I had more but I'm too crabby to even listen to myself rant. Maybe I should take that leftover Valium from my hypaque enema. Still having weird discomfort from that a week later. Discomfort is the wrong word.... How can I put this simply..... my ass hurts. Bad. You people with your anal sex are completely out of your effin mind. You must be masochists. Seriously. OMG.
Ugh--- ok, I'm sick of myself right now. Thanks for listening and sorry for the potty mouth today. I try to hide my sailor language tendencies online, but today it wasn't happening.
On the positive I got my haircut yesterday and I feel like a million bucks. Maybe 2 mill.
Cheers everyone.

I'm feeling crabby today so I'm going to do some bitching.

First of all, got a second denial letter from SSDI. It is a good thing they aren't a bank because you'd never be able to withdraw your own money. Once again they said that in all the time I was sick, being hospitalized, on tons of meds, getting blood transfusions, in severe pain, in the bathroom 20+ times a day, and requiring an entire organ to be removed, I should have had no problem maintaining FT work. And as long as I was following my doctors orders I was A okay. My doctor's orders weren't working, which is why the doctor's decided I needed to be gutted. Soooooo.... Riiiiggghhhtttttt... Delusional mother F*ckers. Mind you, I'm not applying for open ended disability. My attorney is seeking a closed window payment of the time I could not work from my first hospitalization until when I recover from this last surgery. I am well aware that I will be healthy enough to work after my recovery. In fact, you bureaucratic assholes, I welcome it. But don't tell me that I could have been working all this time no problem. I couldn't have and I didn't. But it's fine... you just hang on to MY MONEY that I have been paying into since I was 16 when I got my first job. You know, paying into it in case I ever need it. Like RIGHT NOW!!!!!!!! Yes, instead keep denying me...so now we need to appeal it, and go to court and take up court time and government employee time to go to court. That sounds like a much more efficient plan than JUST GIVING ME A SHORT TERM stipend of MY MONEY because I was/is unable to work due to a disease. Healthy people do not need organs removed in order to improve their life and thrive. AARRGHHHH...... So irritated. Seriously. HEADS UP THEIR ASSES.

My second rant comes a discussions going on in a Facebook group I'm in for Crohn's/Colitis. Basically it's discussing how people think they can give advice on how we IBD'ers can 'cure' ourselves and get rid of our symptoms. Now, that being said, we all know the average person is basically uninformed about general biology. The reason I make that statement is because it is proven to me again and again on a daily basis. People are ignorant. If they weren't, companies wouldn't be making millions of dollars off of people for quick gimmick weight loss pills/diets, or fat burning cream you rub on at night. Yeah, your body just doesn't work that way. So, how is it, that the average person suddenly becomes a digestive expert when you have IBD? Hmmmm.... that's weird? Oh, I need to lose weight and my disease will go away? Oh, I need to exercise more and my disease will go away? Oh, I need to watch my diet and my disease will go away? Such an interesting school of thought. But, ahh no. My disease went away when they TOOK THE DISEASED ORGAN OUT!!!!!!! People- keep your mouths shut about shit you know nothing about. You are not well read on autoimmune diseases (and NO they are NOT the same thing as AIDS so that's a great response when I tell you I have an autoimmune disease. Clever). Go back to being experts on the Kardashians, and 'Toddlers and Tiaras'. My GI spent years trying to get my disease under control with no success. But suddenly, you, who probably doesn't know the first thing about how your colon works, is going to give advice on my illness. The illness I'm living with, and have spent countless days reading and researching what was going on with my body. Reading about and trying every drug out there, who's side effects generally are worse than me dealing with UC. Yes, I'm sure if I ate more veggies I'd be swell. Too bad roughage is like the archenemy of IBD. But thanks! I'll consider your suggestion of green leafy veggies that will tear the shit out of my insides and make me run to the bathroom in 20 minutes where I will spend 3 days bleeding out my ass from your salad suggestion. Yes, by all means, preach it. It might work. Doubtful. You know what WOULD work?! If you listened to what an IBD'er is saying. If you didn't cut them off and say you understand b/c Taco Bell makes you shit your brains out. And maybe, just maybe, if you gave half a shit, you'd do some reading. Get some general knowledge about the human body. It is actually quite helpful to know how your body works, sick or not. But hey, what do I know. I just live it.

That is all.. I had more but I'm too crabby to even listen to myself rant. Maybe I should take that leftover Valium from my hypaque enema. Still having weird discomfort from that a week later. Discomfort is the wrong word.... How can I put this simply..... my ass hurts. Bad. You people with your anal sex are completely out of your effin mind. You must be masochists. Seriously. OMG.
Ugh--- ok, I'm sick of myself right now. Thanks for listening and sorry for the potty mouth today. I try to hide my sailor language tendencies online, but today it wasn't happening.
On the positive I got my haircut yesterday and I feel like a million bucks. Maybe 2 mill.
Cheers everyone.

Back to reality...

Well hello Blogger land. We are back from our mini vacation and the kids started school today! The trip was excellent. No mishaps. I was like a normal person. Well..for me anyway. We left Dallas on Friday at around 6am. Outside of Austin we stopped at this underground cavern tour. It went 70 feet underground. It was amazing. What's beneath the earth's surface that you don't even realize is incredible. What's more incredible is that I could go on an hour long tour underground without hesitation. No toilets down there. I would have missed out prior to my colectomy. Now, I'd love to do it again! Life is real again!!
We went on to the state capital in Austin and then got into San Antonio around dinnertime. Friday was a long and full day. We saw a ton in 12 hours and drove 300+ miles! Saturday we spent at SeaWorld. The only thing I didn't participate in was the water rides. Getting my wafer wet and not being able to dry it stopped me. I didn't feel like dealing with another yeast infection. The day was awesome. Fed and petted the dolphins, saw the coral reef get fed by the SCUBA lady. Pic of us at the end of the day--->

 ..... I over packed my gear and used less than I thought but better to be over prepared! No sunscreen fails either. Everyone survived lobster free!
If you are ever in SA hit up Riverwalk. Very cool concept. Restaurants and shops and beautiful walkways and greenery all along the river through the city. Look it up. I loved it. Wish we had time for the boat ride though. Only disappointment.
Sunday we saw the Alamo and headed home. My bathroom breaks didn't hold us up! Yah!! I had zero anxiety and stress about the situation. All in all- wonderful. I seriously wouldn't have been able to do this in May and before. Now- anything I want to do is available to me!
Such a great feeling. Now I just have to conquer the TSA! Piece of cake!
Seeing the surgeon Thursday to schedule my reversal! So excited! It will feel good to have a date in the books. I'll keep everyone posted as you know.
Oh- new pic of how beautiful my belly and stoma looks! Yes, beautiful and perfect!

Here are some random pics of the trip. I'm posting from my phone so I hope it works!!



Part of the Riverwalk in San Antonio. So amazing.





Underground cavern



The Alamo. So small in person.



#1 and me on the trip.

We fed the dolphins at SeaWorld. Very cool. 

#1 and me after dinner at Riverwalk.

Well hello Blogger land. We are back from our mini vacation and the kids started school today! The trip was excellent. No mishaps. I was like a normal person. Well..for me anyway. We left Dallas on Friday at around 6am. Outside of Austin we stopped at this underground cavern tour. It went 70 feet underground. It was amazing. What's beneath the earth's surface that you don't even realize is incredible. What's more incredible is that I could go on an hour long tour underground without hesitation. No toilets down there. I would have missed out prior to my colectomy. Now, I'd love to do it again! Life is real again!!
We went on to the state capital in Austin and then got into San Antonio around dinnertime. Friday was a long and full day. We saw a ton in 12 hours and drove 300+ miles! Saturday we spent at SeaWorld. The only thing I didn't participate in was the water rides. Getting my wafer wet and not being able to dry it stopped me. I didn't feel like dealing with another yeast infection. The day was awesome. Fed and petted the dolphins, saw the coral reef get fed by the SCUBA lady. Pic of us at the end of the day--->

 ..... I over packed my gear and used less than I thought but better to be over prepared! No sunscreen fails either. Everyone survived lobster free!
If you are ever in SA hit up Riverwalk. Very cool concept. Restaurants and shops and beautiful walkways and greenery all along the river through the city. Look it up. I loved it. Wish we had time for the boat ride though. Only disappointment.
Sunday we saw the Alamo and headed home. My bathroom breaks didn't hold us up! Yah!! I had zero anxiety and stress about the situation. All in all- wonderful. I seriously wouldn't have been able to do this in May and before. Now- anything I want to do is available to me!
Such a great feeling. Now I just have to conquer the TSA! Piece of cake!
Seeing the surgeon Thursday to schedule my reversal! So excited! It will feel good to have a date in the books. I'll keep everyone posted as you know.
Oh- new pic of how beautiful my belly and stoma looks! Yes, beautiful and perfect!

Here are some random pics of the trip. I'm posting from my phone so I hope it works!!



Part of the Riverwalk in San Antonio. So amazing.





Underground cavern



The Alamo. So small in person.



#1 and me on the trip.

We fed the dolphins at SeaWorld. Very cool. 

#1 and me after dinner at Riverwalk.