It's been a long time coming...

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Unexpected recovery.

Well, in my last post I talked about getting scoped to check for fistulas, fissures etc... Tuesday morning came and I was STARVING after being on fluids all day Monday.

Ready to go. A simple scope, right?

 I couldn't wait to eat after my scope. It's always one of my favorite meals because you realize how great food is after spending two days on chicken broth.

My view of the lights in the OR. Just hanging out, waiting. 

Well, imagine my surprise(horror) when I woke up from anesthesia in absolute, excruciating pain and in tears. Waking up crying isn't exactly normal. I was there alone b/c I've had so many scopes that it is nothing to me, so I had told Hubs to leave and just head back when they call that I'm in recovery. I was my surgeon's last procedure before he left to have his office hours and was still out when he checked in before he left. So in my fog, I heard the nurse say something about surgery, she handed me a Lortab and then said she was calling my surgeon. I was just laying there crying... Not to be completely ridiculous but it felt like someone drove a car up my ass. After 20 minutes the Lortab had done nothing. At that point I was wishing for post delivery pain from having my kids. Lovely. So I vaguely hear her on the phone. She returned like an angel with a push of Demerol for my IV, so within 5 seconds I was a happy and completely stoned girl. Hubs shows up and talks to my surgeon. He discovered a few issues while doing the scope. Ulcers and inflammation in the 1cm of what's left of my rectum and anal fistulas. Now, if you were a good student and googled 'fistulas' like I said, you would have found out that they are essentially an infection that burrows and fills with pus below the surface. As you can imagine, pockets of that can cause the extreme pain I had been dealing with for MONTHS.  Sexy, I know... settle down!! I am one lucky bitch!!
 So the only way to treat these disgusting things is to open them up and clean them out and let them drain. Antibiotics don't work. So, yeah. I woke up to that having been done to my ass. And he took a bunch of biopsies as well because of the inflammation. I'm actually kinda thankful he just did it while he had me there. The procedure cost $1200 so having had to go back and pay that again would have pissed me off. As it is I feel like someone should have paid ME for having to go through that shit. Just disgusting. I mean, prior to me getting sick I never even knew this kind of crap existed for people. I suppose that's why I talk about it.
Needless to say, my Norcos have been my best friend since Wednesday. Tuesday I was out for the count for the rest of the day which I'm used to. Anesthesia has always done that which I don't mind.
It has been pretty painful this week. Walking around is nearly impossible. Squatting, sitting... I can't lift for another week while this crap heals. I'm afraid to eat because you can imagine how fun going to the bathroom is with all that nonsense going on... so it's been pretty cool. Not at all.
So yeah, the last few weeks have really sucked. Last night I got the coolest message from a friend I haven't seen in years... He said my blog was like me- "honest and awesome". I have to say, that made my night. It's funny how you may think someone may not even consider you at all...and then have them say something so great like that. I don't know. It was just pretty cool. So, to my friend, thank you for that. =)

Trying to make recovery look easy.

I'm hoping the next few days has the pain tapering off. I see my Surgeon on the 3rd so I will get all my biopsy results back. He's assuming it will be Proctitis and not Crohn's like we feared. I'm just preparing for the worst anyway. It tends to make the reality easier. Regardless, this means I will be going on meds  of some type. Possibly a steroid. None of that is making me happy because the whole reason I went with getting gutted was to avoid pumping myself full of meds forever. <sigh> Such complete bullshit. Like really, that 1cm has to give me trouble after getting over 5 feet of guts removed. Ridiculous. Sneaky disease. I'm still going to shut you down. It might take me another 5 years. Whatever. But I'm going to win. I always win. ;-)
Thanks for reading... go out and run around and eat a bunch of food, and drink some beer for me, ok? Sweet! I appreciate it.

Well, in my last post I talked about getting scoped to check for fistulas, fissures etc... Tuesday morning came and I was STARVING after being on fluids all day Monday.

Ready to go. A simple scope, right?

 I couldn't wait to eat after my scope. It's always one of my favorite meals because you realize how great food is after spending two days on chicken broth.

My view of the lights in the OR. Just hanging out, waiting. 

Well, imagine my surprise(horror) when I woke up from anesthesia in absolute, excruciating pain and in tears. Waking up crying isn't exactly normal. I was there alone b/c I've had so many scopes that it is nothing to me, so I had told Hubs to leave and just head back when they call that I'm in recovery. I was my surgeon's last procedure before he left to have his office hours and was still out when he checked in before he left. So in my fog, I heard the nurse say something about surgery, she handed me a Lortab and then said she was calling my surgeon. I was just laying there crying... Not to be completely ridiculous but it felt like someone drove a car up my ass. After 20 minutes the Lortab had done nothing. At that point I was wishing for post delivery pain from having my kids. Lovely. So I vaguely hear her on the phone. She returned like an angel with a push of Demerol for my IV, so within 5 seconds I was a happy and completely stoned girl. Hubs shows up and talks to my surgeon. He discovered a few issues while doing the scope. Ulcers and inflammation in the 1cm of what's left of my rectum and anal fistulas. Now, if you were a good student and googled 'fistulas' like I said, you would have found out that they are essentially an infection that burrows and fills with pus below the surface. As you can imagine, pockets of that can cause the extreme pain I had been dealing with for MONTHS.  Sexy, I know... settle down!! I am one lucky bitch!!
 So the only way to treat these disgusting things is to open them up and clean them out and let them drain. Antibiotics don't work. So, yeah. I woke up to that having been done to my ass. And he took a bunch of biopsies as well because of the inflammation. I'm actually kinda thankful he just did it while he had me there. The procedure cost $1200 so having had to go back and pay that again would have pissed me off. As it is I feel like someone should have paid ME for having to go through that shit. Just disgusting. I mean, prior to me getting sick I never even knew this kind of crap existed for people. I suppose that's why I talk about it.
Needless to say, my Norcos have been my best friend since Wednesday. Tuesday I was out for the count for the rest of the day which I'm used to. Anesthesia has always done that which I don't mind.
It has been pretty painful this week. Walking around is nearly impossible. Squatting, sitting... I can't lift for another week while this crap heals. I'm afraid to eat because you can imagine how fun going to the bathroom is with all that nonsense going on... so it's been pretty cool. Not at all.
So yeah, the last few weeks have really sucked. Last night I got the coolest message from a friend I haven't seen in years... He said my blog was like me- "honest and awesome". I have to say, that made my night. It's funny how you may think someone may not even consider you at all...and then have them say something so great like that. I don't know. It was just pretty cool. So, to my friend, thank you for that. =)

Trying to make recovery look easy.

I'm hoping the next few days has the pain tapering off. I see my Surgeon on the 3rd so I will get all my biopsy results back. He's assuming it will be Proctitis and not Crohn's like we feared. I'm just preparing for the worst anyway. It tends to make the reality easier. Regardless, this means I will be going on meds  of some type. Possibly a steroid. None of that is making me happy because the whole reason I went with getting gutted was to avoid pumping myself full of meds forever. <sigh> Such complete bullshit. Like really, that 1cm has to give me trouble after getting over 5 feet of guts removed. Ridiculous. Sneaky disease. I'm still going to shut you down. It might take me another 5 years. Whatever. But I'm going to win. I always win. ;-)
Thanks for reading... go out and run around and eat a bunch of food, and drink some beer for me, ok? Sweet! I appreciate it.

Invisibly sick... a day in my life.

So people always talk about Invisible Illnesses. IBD has that funny way of being one. You don't always look sick. Currently I'm not anemic so I'm not pale. I'm thin but not malnourished and sickly thin. I'm not weak and run down so I have what looks like normal energy levels. I'm no longer on steroids that puff my face up. I'm not on immunosuppressants that make my hair fall out. On the surface I look fine. If you didn't know, you wouldn't know. So I'm sure there are plenty of people rolling their eyes if I say I have pain or who are doubtful about why I haven't worked in years or why when I finally was feeling better and got a job, I got taken out for two weeks. I suppose it's all very easy to doubt and to not believe. Those who have had chronic pain understand. Those with IBD understand. You have weeks, months of feeling "normal" for the first time and think you have finally crossed that bridge. Then you realize you haven't even gotten there yet. I've written about the IBD stuff often enough that people get how it affects lives. Now, post surgery, a year out from colectomy I am frustrated. I am in pain. It hurts to stand, to walk, to move around. It hurts to wear anything but granny panties and sweats. It hurts to pee. I've been eating less so I won't go to the bathroom. I'm taking pain meds and muscle relaxers and topical creams to lessen my misery. No one can see any of that. No one looks at me and has any idea how much pain and discomfort I'm in while I'm carrying on the most random conversation about nothing. Google 'anal fissures'. Google 'anal fistulas'. It's horrible. Click on 'images' and it gets even better. It is graphic. They are things you probably never even considered existed. Hemorrhoids, yes maybe, but the issues that can crop up down there with IBD just aren't talked about. The whole fissure situation was bad enough...seriously. But with fistulas it's an entirely different scenario. That means surgery. More pain. I'm not here to gross you out but if you went and googled like I said to, you can only imagine. Of course many of those images are VERY extreme. But my point is, sickness can be invisible. Pain is invisible and easily hidden by those who are accustomed to having it daily. So before you pass judgement on people who 'don't look sick', you should also consider what you can't see. Issues that you'll never even consider being a possibility in life that someone right in front of you has going on. I don't know. I feel like it's been a very weird few years of my brain and body battling it out and my body winning a lot. It has been hard being in my early 30s and having to say I just don't work. I'm sure to many that sounds like a dream or is their reality, but when it's not a choice, it's different. I'm not just choosing to stay home with my kids. I'm not just choosing to be dependent on Hubs. I'm not lazy or feel like a man has to take care of me. It has not been a realistic possibility for me to work since 2010. And honestly I probably should have stopped prior to that because work was affecting my health immensely but I didn't.  I don't know where I wanted to go with this post other than to say, sometimes it just really sucks to not be in control. To be limited in your capacities and abilities and independence really sucks. It's the Anti-Lisa. And I'm tired of it. Life really does have a way of laughing at your plan. No matter how much a perfect plan or life you have plotted out, in the end you don't have very much control over it like you think. You get dealt one bad health situation and it affects you for years. You just never know what's around the corner and that goes for positive things as well. I just try to play the hand I'm dealt. I try to make the best decisions for right now, for today, because that's the only thing I'm sure of. Tomorrow may prove me wrong... I guess I'll wait and see.

So people always talk about Invisible Illnesses. IBD has that funny way of being one. You don't always look sick. Currently I'm not anemic so I'm not pale. I'm thin but not malnourished and sickly thin. I'm not weak and run down so I have what looks like normal energy levels. I'm no longer on steroids that puff my face up. I'm not on immunosuppressants that make my hair fall out. On the surface I look fine. If you didn't know, you wouldn't know. So I'm sure there are plenty of people rolling their eyes if I say I have pain or who are doubtful about why I haven't worked in years or why when I finally was feeling better and got a job, I got taken out for two weeks. I suppose it's all very easy to doubt and to not believe. Those who have had chronic pain understand. Those with IBD understand. You have weeks, months of feeling "normal" for the first time and think you have finally crossed that bridge. Then you realize you haven't even gotten there yet. I've written about the IBD stuff often enough that people get how it affects lives. Now, post surgery, a year out from colectomy I am frustrated. I am in pain. It hurts to stand, to walk, to move around. It hurts to wear anything but granny panties and sweats. It hurts to pee. I've been eating less so I won't go to the bathroom. I'm taking pain meds and muscle relaxers and topical creams to lessen my misery. No one can see any of that. No one looks at me and has any idea how much pain and discomfort I'm in while I'm carrying on the most random conversation about nothing. Google 'anal fissures'. Google 'anal fistulas'. It's horrible. Click on 'images' and it gets even better. It is graphic. They are things you probably never even considered existed. Hemorrhoids, yes maybe, but the issues that can crop up down there with IBD just aren't talked about. The whole fissure situation was bad enough...seriously. But with fistulas it's an entirely different scenario. That means surgery. More pain. I'm not here to gross you out but if you went and googled like I said to, you can only imagine. Of course many of those images are VERY extreme. But my point is, sickness can be invisible. Pain is invisible and easily hidden by those who are accustomed to having it daily. So before you pass judgement on people who 'don't look sick', you should also consider what you can't see. Issues that you'll never even consider being a possibility in life that someone right in front of you has going on. I don't know. I feel like it's been a very weird few years of my brain and body battling it out and my body winning a lot. It has been hard being in my early 30s and having to say I just don't work. I'm sure to many that sounds like a dream or is their reality, but when it's not a choice, it's different. I'm not just choosing to stay home with my kids. I'm not just choosing to be dependent on Hubs. I'm not lazy or feel like a man has to take care of me. It has not been a realistic possibility for me to work since 2010. And honestly I probably should have stopped prior to that because work was affecting my health immensely but I didn't.  I don't know where I wanted to go with this post other than to say, sometimes it just really sucks to not be in control. To be limited in your capacities and abilities and independence really sucks. It's the Anti-Lisa. And I'm tired of it. Life really does have a way of laughing at your plan. No matter how much a perfect plan or life you have plotted out, in the end you don't have very much control over it like you think. You get dealt one bad health situation and it affects you for years. You just never know what's around the corner and that goes for positive things as well. I just try to play the hand I'm dealt. I try to make the best decisions for right now, for today, because that's the only thing I'm sure of. Tomorrow may prove me wrong... I guess I'll wait and see.

The mask I wear...

Well, I've been meaning to bang this bitch fest out for a few days so here goes...
I HATE IBD. I HATE what it has done to my body and my life. I HATE being THAT girl who can't hold up her end of the deal because I have no idea when my body wil decide to betray me. I HATE being forever changed. Even though being sick has taught me a lot about myself and has revealed a strength and resolve I never knew I had, I kinda liked me the way I was. I don't think I needed to learn that I could endure this much pain. If I never had it, I think I would still be kick ass and living my life my way like Hurricane Lisa does. Instead, I got sidetracked and held back along with the lesson. The last 10 days have been unbearable for me. Besides the wonderful rectal spasms that are in a pain category all their own, I developed yet another horrible rash. IBDers call it butt burn but this is butt burn times 100. It is full on adult diaper rash. No wonder babies scream bloody murder with rashes. Holy shit, it hurts. My skin is so raw it's weeping. I have cut back my food and my fluids because going to the bathroom is pure torture. Even peeing. Your pee is acidic. That on raw skin can make you cry. And it has. I go through all of this with a smile on my face. With my makeup done, and my hair blow dried and a cute outfit on. I crack jokes as my facade. I'm due a mother effing Oscar is what it is.
Someone in one of my IBD groups on Facebook had commented this weekend that a picture I posted showed me looking happy and healthy. It's all bullshit. Smoke and mirrors. Urban Decay concealer and some great highlighter. Here's me faking everything being swell while I'm in pain just sitting down.

Concealer, bronzer, highlighter and Norco= fake health. 

My dad was in town for Father's Day. I wasn't about to let my pain control his trip. We went to dinner. I smiled and took pictures on Father's Day while on the inside I was cringing and in pain. My head a fog of pain killers and muscle relaxers just to allow me to function at a basic level. Moving sends pain searing through my body. I reapply my lipgloss and smile and make a joke. It's such a game. It's such bullshit. I want my life back. I don't want to leave work early because I'm in pain. I freaking HATE it. And I'm skinny. I'm at the lowest end of a healthy weight for 5'3". A few days of pain and I drop 5-8 pounds because as it is I absorb nothing. But I look great. I'm so skinny. I'm so lucky. Oh yeah--- Soooooo lucky. :|  I can buy clothes in the girls department and I lost my tits. Yeah- I lucked the hell right out with the big ole IBD lottery. Ugh--- I'd trade all this crap for 40 pounds and a properly functioning body.
So my surgeon was out of town last week and I finally got in to see him today at 5.

Just a normal day. Waiting for more pain at the surgeon's. 

 I need to get my pouch scoped because he doesn't feel the CT AND the MRI were comprehensive enough to figure out what's going on. I'm in too much pain. Spasms won't stop. My pouch surgery was textbook and now to have all this post OP shit is ridiculous. My surgeon says to me tonight that all my issues are issues that are present with Crohn's. CROHN'S. No. I refuse to accept that until there is something to substantiate it. I was tested and retested and biopsied within an inch of my life and NOTHING ever pointed to Crohn's. My surgeon had my small intestines IN HIS HANDS on purpose last May to triple check. I got gutted and cut wide open instead of doing it laproscopically so that he could better check my small bowel before gutting me.
I just don't know. So I get to go have my pouch checked out at Baylor with my surgeon, his partner and some other superman colo-rectal guy so they can all use me as a science experiment and try to problem solve. Luckily, I don't have any modesty left whatsoever so 3 grown men scoping my ass is just another day for me.
It is days like today where I feel this tiny pull telling me to go back to my ileostomy. Yes...seriously. Where many feel ostomies are a death sentence, I would actually consider going back.
I'm emotionally exhausted. I'm physically shutting down some days. I don't sleep from pain. I feel like I've been fighting an internal war for 4 years. How do I hang on? How do I get up everyday and bother faking it and keep going. Wouldn't it be easier to stay in bed, screw wearing makeup and putting an outfit together. Wouldn't that be more reflective of "sick"?? Sure. But I know that's not me. IBD may be destroying my body but I try so hard to stop it from destroying who I am. I give up a lot as it is. I don't feel independent anymore. Well, I'm not. I went back to work to try to regain some of it and it is a daily battle every time I have to go in. That's not me. I keep trying to force myself back into a Lisa that isn't really there anymore. And I'm stubborn and just keep trying.  I rely on Mat so much. He went out on a whim yesterday and got a new truck. I want to do that. I'm so afraid I'm stuck in this dependent state forever because these issues won't end. I hate putting that on him too. It's not fair to him. I could go around and around. It won't change anything right now. I just need to face the reality head on and make the most of it. In the meantime, my Disability hearing is finally in August. Yeah, over a year after it was requested because I got denied 3 times because I should have had no problem working fulltime while I was hemorrhaging blood daily about 30 times a day. Yeah- sounds completely doable to be holding a job with that going on.
Ok, I'm ending on this because the pain meds are kicked in. My surgeon took me off work for two weeks while I get tested, scoped and so my skin can heal. He wants me basically doing nothing to try to keep the spasms at bay and help my skin heal. <Sigh>  Defective. I feel like a defective burden. I don't know how much more I can take.
Good night all....

Well, I've been meaning to bang this bitch fest out for a few days so here goes...
I HATE IBD. I HATE what it has done to my body and my life. I HATE being THAT girl who can't hold up her end of the deal because I have no idea when my body wil decide to betray me. I HATE being forever changed. Even though being sick has taught me a lot about myself and has revealed a strength and resolve I never knew I had, I kinda liked me the way I was. I don't think I needed to learn that I could endure this much pain. If I never had it, I think I would still be kick ass and living my life my way like Hurricane Lisa does. Instead, I got sidetracked and held back along with the lesson. The last 10 days have been unbearable for me. Besides the wonderful rectal spasms that are in a pain category all their own, I developed yet another horrible rash. IBDers call it butt burn but this is butt burn times 100. It is full on adult diaper rash. No wonder babies scream bloody murder with rashes. Holy shit, it hurts. My skin is so raw it's weeping. I have cut back my food and my fluids because going to the bathroom is pure torture. Even peeing. Your pee is acidic. That on raw skin can make you cry. And it has. I go through all of this with a smile on my face. With my makeup done, and my hair blow dried and a cute outfit on. I crack jokes as my facade. I'm due a mother effing Oscar is what it is.
Someone in one of my IBD groups on Facebook had commented this weekend that a picture I posted showed me looking happy and healthy. It's all bullshit. Smoke and mirrors. Urban Decay concealer and some great highlighter. Here's me faking everything being swell while I'm in pain just sitting down.

Concealer, bronzer, highlighter and Norco= fake health. 

My dad was in town for Father's Day. I wasn't about to let my pain control his trip. We went to dinner. I smiled and took pictures on Father's Day while on the inside I was cringing and in pain. My head a fog of pain killers and muscle relaxers just to allow me to function at a basic level. Moving sends pain searing through my body. I reapply my lipgloss and smile and make a joke. It's such a game. It's such bullshit. I want my life back. I don't want to leave work early because I'm in pain. I freaking HATE it. And I'm skinny. I'm at the lowest end of a healthy weight for 5'3". A few days of pain and I drop 5-8 pounds because as it is I absorb nothing. But I look great. I'm so skinny. I'm so lucky. Oh yeah--- Soooooo lucky. :|  I can buy clothes in the girls department and I lost my tits. Yeah- I lucked the hell right out with the big ole IBD lottery. Ugh--- I'd trade all this crap for 40 pounds and a properly functioning body.
So my surgeon was out of town last week and I finally got in to see him today at 5.

Just a normal day. Waiting for more pain at the surgeon's. 

 I need to get my pouch scoped because he doesn't feel the CT AND the MRI were comprehensive enough to figure out what's going on. I'm in too much pain. Spasms won't stop. My pouch surgery was textbook and now to have all this post OP shit is ridiculous. My surgeon says to me tonight that all my issues are issues that are present with Crohn's. CROHN'S. No. I refuse to accept that until there is something to substantiate it. I was tested and retested and biopsied within an inch of my life and NOTHING ever pointed to Crohn's. My surgeon had my small intestines IN HIS HANDS on purpose last May to triple check. I got gutted and cut wide open instead of doing it laproscopically so that he could better check my small bowel before gutting me.
I just don't know. So I get to go have my pouch checked out at Baylor with my surgeon, his partner and some other superman colo-rectal guy so they can all use me as a science experiment and try to problem solve. Luckily, I don't have any modesty left whatsoever so 3 grown men scoping my ass is just another day for me.
It is days like today where I feel this tiny pull telling me to go back to my ileostomy. Yes...seriously. Where many feel ostomies are a death sentence, I would actually consider going back.
I'm emotionally exhausted. I'm physically shutting down some days. I don't sleep from pain. I feel like I've been fighting an internal war for 4 years. How do I hang on? How do I get up everyday and bother faking it and keep going. Wouldn't it be easier to stay in bed, screw wearing makeup and putting an outfit together. Wouldn't that be more reflective of "sick"?? Sure. But I know that's not me. IBD may be destroying my body but I try so hard to stop it from destroying who I am. I give up a lot as it is. I don't feel independent anymore. Well, I'm not. I went back to work to try to regain some of it and it is a daily battle every time I have to go in. That's not me. I keep trying to force myself back into a Lisa that isn't really there anymore. And I'm stubborn and just keep trying.  I rely on Mat so much. He went out on a whim yesterday and got a new truck. I want to do that. I'm so afraid I'm stuck in this dependent state forever because these issues won't end. I hate putting that on him too. It's not fair to him. I could go around and around. It won't change anything right now. I just need to face the reality head on and make the most of it. In the meantime, my Disability hearing is finally in August. Yeah, over a year after it was requested because I got denied 3 times because I should have had no problem working fulltime while I was hemorrhaging blood daily about 30 times a day. Yeah- sounds completely doable to be holding a job with that going on.
Ok, I'm ending on this because the pain meds are kicked in. My surgeon took me off work for two weeks while I get tested, scoped and so my skin can heal. He wants me basically doing nothing to try to keep the spasms at bay and help my skin heal. <Sigh>  Defective. I feel like a defective burden. I don't know how much more I can take.
Good night all....

Day #4 WEGO writing challenge.

Today’s Prompt:

• Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!

I know when I first started having symptoms WebMD became my life line. By the time I got diagnosed I had narrowed it down to Crohn's or UC. I went into my post colonoscopy prepared to be told it was one or the other. It made the news less damaging. When the GI said, "Left sided colitis", it was no surprise. I even knew a lot about the meds that were possibilities and when he put me on Asacol, I had already read about it. 

Being familiar with the words, and the terms didn't make me any more prepared for the LIFE. I felt very isolated and only told a few about my diagnosis. I needed to just carry on. If I told people, they may treat me differently and then it would impact my life. I wasn't ready for that. It really wasn't until my first hospitalization that I finally became more realistic that, UC was a big part of my life. I was sick. I had a DISEASE!!!! Me! A disease. It's hard to wrap your brain around. Once I was hospitalized, it woke me up that life was now different. I was different. In little ways I started to feel alone and defective. I started looking online and through Facebook for groups. I needed a connection with people who understood. I needed that community. What I found was some really great people. Being (pseudo) surrounded by others who are experiencing what you are is empowering. I stopped feeling defective and became stronger in my ability to discuss my issues. I went from thinking no one would understand to knowing there were thousands of people going through what I was and it allowed me to do something about the people I thought wouldn't understand. IBD is a difficult thing to just throw into conversation. In school today it happened. I had said that at one point I had needed 4 units of blood because I had lost so much during my flare, and a person asked, "Well how did you lose it". That's when you get to tell them that you shit blood. There's really no way to pretty that up. My number two's were always bloody? No, that doesn't dial in on the fact that blood literally POURS OUT OF YOU. Like holy shit, I'm going to bleed to death right now on the crapper. Yeah, so IBD is hard to put delicately and many people don't want to hear that. It makes it real. The reality can suck. 

So here is my list of FAN-FREAKING-TASTIC sites that are empowering and educating and supportive and welcoming and helped me to move forward to tell my story whenever I got the chance. Which is often! =) I hope it helps you cope and learn you have power in your story, or maybe you will pass them on to someone you know who just got diagnosed. Or maybe you are just curious. Either way.... check them out! Thanks for reading! 

Crohn's and Colitis Foundation of America

http://www.healingwell.com/

http://www.inflamed-and-untamed.com/

You and IBD

Girls with Guts

The Great Bowel Movement

Intense Intestines

Today’s Prompt:

• Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!

I know when I first started having symptoms WebMD became my life line. By the time I got diagnosed I had narrowed it down to Crohn's or UC. I went into my post colonoscopy prepared to be told it was one or the other. It made the news less damaging. When the GI said, "Left sided colitis", it was no surprise. I even knew a lot about the meds that were possibilities and when he put me on Asacol, I had already read about it. 

Being familiar with the words, and the terms didn't make me any more prepared for the LIFE. I felt very isolated and only told a few about my diagnosis. I needed to just carry on. If I told people, they may treat me differently and then it would impact my life. I wasn't ready for that. It really wasn't until my first hospitalization that I finally became more realistic that, UC was a big part of my life. I was sick. I had a DISEASE!!!! Me! A disease. It's hard to wrap your brain around. Once I was hospitalized, it woke me up that life was now different. I was different. In little ways I started to feel alone and defective. I started looking online and through Facebook for groups. I needed a connection with people who understood. I needed that community. What I found was some really great people. Being (pseudo) surrounded by others who are experiencing what you are is empowering. I stopped feeling defective and became stronger in my ability to discuss my issues. I went from thinking no one would understand to knowing there were thousands of people going through what I was and it allowed me to do something about the people I thought wouldn't understand. IBD is a difficult thing to just throw into conversation. In school today it happened. I had said that at one point I had needed 4 units of blood because I had lost so much during my flare, and a person asked, "Well how did you lose it". That's when you get to tell them that you shit blood. There's really no way to pretty that up. My number two's were always bloody? No, that doesn't dial in on the fact that blood literally POURS OUT OF YOU. Like holy shit, I'm going to bleed to death right now on the crapper. Yeah, so IBD is hard to put delicately and many people don't want to hear that. It makes it real. The reality can suck. 

So here is my list of FAN-FREAKING-TASTIC sites that are empowering and educating and supportive and welcoming and helped me to move forward to tell my story whenever I got the chance. Which is often! =) I hope it helps you cope and learn you have power in your story, or maybe you will pass them on to someone you know who just got diagnosed. Or maybe you are just curious. Either way.... check them out! Thanks for reading! 

Crohn's and Colitis Foundation of America

http://www.healingwell.com/

http://www.inflamed-and-untamed.com/

You and IBD

Girls with Guts

The Great Bowel Movement

Intense Intestines

Day #2- Hello, my name is Lisa and I had UC. I upgraded to a JPouch! #HAWMC

Hey there, hi there. I am an IBD warrior. A UC survivor. I kicked my colon's ass. So to speak.
UC is Ulcerative Colitis and is an Inflammatory Bowel Disease. And it is horrible. Another IBD is Crohn's which tends to be more recognizable, although different. Crohn's affects the ENTIRE digestive tract, mouth to anus, while UC is strictly in the colon. They are 'invisible' diseases where you are lucky enough to have people say, "You don't look sick". If you had xray vision you'd know the truth. UC flares consist of your colon being inflamed and covered in bleeding ulcers. Have you had a canker sore(I used to get mouth fulls of them)? They are pretty painful right? Water can hurt. Now imagine the organ that absorbs your water, and your salt and your electrolytes being covered with those nasty things. Now imagine all your food scraping past them. Pain with a capital P!! There are different levels of UC. I had pancolitis which means my entire colon was affected. In turn, my entire life was affected. Everyone connects diseases like this with diarrhea which seems like no big deal. I want people to know it's 20-30 times daily, plus blood loss, plus pain, throw in some arthritis and then the inability to properly absorb water and salt and electrolytes, it becomes a huge deal. Having some diarrhea doesn't require blood transfusions, immune system suppressing drugs, steroids, hospitalizations, invasive testing, and living on narcotics to get through your day. I feel like to truly educate people about IBD we must be a little gross and graphic because they are not diseases that are as highly broadcast as others. Sure diarrhea is a big part of them, but I'm sure most IBDers would agree with me when I say it is SO much MORE than that. I think most of focus, and what I want is to educate others in the most broad manner possible about IBD. Many times when I am speaking about it, I have to backtrack and make sure people truly know what your colon(large intestine) does in order for them to understand why a diseased one is big trouble. Many don't understand autoimmune either. I can't count how many times I have said, "I have Ulcerative Colitis". What's that, they say. "It's an autoimmune disease", I reply. "Oh, like AIDS"? <SIGH>

I have included some past posts from my blog that I thought had some great insights and a pretty solid view of a portion of what I've been through. They are in order but keep in mind there were posts in between so to get the full enchilada you need to check all of them out.

http://gutsylisa.blogspot.com/2012/06/we-all-have-our-anchors-that-hold-us.html

http://gutsylisa.blogspot.com/2012/10/1-week-down-now-what.html

http://gutsylisa.blogspot.com/2012/11/what-difference-year-makes.html

http://gutsylisa.blogspot.com/2012/11/lucky-me.html

I hope you like them. I hope you learn something. I hope it helps you be a bit more understanding if you happen to know someone struggling with an IBD.
Thanks for reading. XO

Hey there, hi there. I am an IBD warrior. A UC survivor. I kicked my colon's ass. So to speak.
UC is Ulcerative Colitis and is an Inflammatory Bowel Disease. And it is horrible. Another IBD is Crohn's which tends to be more recognizable, although different. Crohn's affects the ENTIRE digestive tract, mouth to anus, while UC is strictly in the colon. They are 'invisible' diseases where you are lucky enough to have people say, "You don't look sick". If you had xray vision you'd know the truth. UC flares consist of your colon being inflamed and covered in bleeding ulcers. Have you had a canker sore(I used to get mouth fulls of them)? They are pretty painful right? Water can hurt. Now imagine the organ that absorbs your water, and your salt and your electrolytes being covered with those nasty things. Now imagine all your food scraping past them. Pain with a capital P!! There are different levels of UC. I had pancolitis which means my entire colon was affected. In turn, my entire life was affected. Everyone connects diseases like this with diarrhea which seems like no big deal. I want people to know it's 20-30 times daily, plus blood loss, plus pain, throw in some arthritis and then the inability to properly absorb water and salt and electrolytes, it becomes a huge deal. Having some diarrhea doesn't require blood transfusions, immune system suppressing drugs, steroids, hospitalizations, invasive testing, and living on narcotics to get through your day. I feel like to truly educate people about IBD we must be a little gross and graphic because they are not diseases that are as highly broadcast as others. Sure diarrhea is a big part of them, but I'm sure most IBDers would agree with me when I say it is SO much MORE than that. I think most of focus, and what I want is to educate others in the most broad manner possible about IBD. Many times when I am speaking about it, I have to backtrack and make sure people truly know what your colon(large intestine) does in order for them to understand why a diseased one is big trouble. Many don't understand autoimmune either. I can't count how many times I have said, "I have Ulcerative Colitis". What's that, they say. "It's an autoimmune disease", I reply. "Oh, like AIDS"? <SIGH>

I have included some past posts from my blog that I thought had some great insights and a pretty solid view of a portion of what I've been through. They are in order but keep in mind there were posts in between so to get the full enchilada you need to check all of them out.

http://gutsylisa.blogspot.com/2012/06/we-all-have-our-anchors-that-hold-us.html

http://gutsylisa.blogspot.com/2012/10/1-week-down-now-what.html

http://gutsylisa.blogspot.com/2012/11/what-difference-year-makes.html

http://gutsylisa.blogspot.com/2012/11/lucky-me.html

I hope you like them. I hope you learn something. I hope it helps you be a bit more understanding if you happen to know someone struggling with an IBD.
Thanks for reading. XO

Nonstop, little sleep, lots of meds, repeat.

It has been some time!!! Sorry it's been so long... Following my last blog post I was miserable and dealing with some JPouch issues and was in the worst mood for a few days and then life got in the way. I saw my surgeon last week and was basically a wreck. I wasn't sleeping because my skin was so raw and was weeping. NOTHING I did was working. The pain and the spasms kept me up or woke me up multiple times per night. I had lost a very small amount of blood a few times, and after everything I've been through, one drop and I am in an internal panic. I was near a breaking point from exhaustion. My surgeon comes in the room and I just started crying. He didn't know what to do. I launched into my tirade about my misery and exhaustion and just kept crying. He looks at me after I stopped for a second, and says, "Lisa, I don't know how to handle this with you. You are one of the strongest people I have ever treated, with one of the worst cases of UC, and you always have humor and a joke. I can't handle this side of you. I'm going to fix it". Well, naturally that made me cry harder and then lucky me....... I got to have an internal exam. It was my lucky day. Whoop whoop. Once again I will reiterate, I have no shame, dignity or modesty left... LONG GONE!!
So, he prescribes me Valium, more Flexeril(yeah, who knew digestive diseases would get you the good stuff), lidocaine gel(use your imagination) and a topical cream. I'm seriously a walking pharmacy. Want to know how often I fill prescriptions? They don't even glance at my license for a controlled substance anymore because THEY KNOW ME. Crazy. But I digress....
I felt better after leaving the office because my surgeon is great. He will listen, and keep trying to fix whatever the problem is. So many doctors dismiss their patients and are arrogant. I get none of that with mine and it's wonderful.
In the meantime I started classes and it is kicking my ass. A lot of work. A lot of material. It's scary. I am having my moments of being overwhelmed especially when my 18 month old is going nuts, tearing through the house and I'm trying to study tissues samples!! Yikes. No bueno. On top of it, my sleep is very broken which makes the mornings feel like torture. I'm trying to adjust. One thing that is so awesome that most will find weird is that Hubs installed a retro fit Bidet on our master bathroom toilet. OMG seriously, it is amazing!! Everyone should have one. Seriously. Go Bidet. It has changed my life now that I have a JPouch and the skin issues that go along with it as I've explained before.
Anyway- that's been my big exciting news. So great.
Oh, another awesome thing is I am going to be a guest blogger for http://thegreatbowelmovement.org/. I am so excited. They are a great little thing with awesome Tshirts like the one I have that says, "Ask me about my Ostomy". Awareness, awareness and conversation. So important to us IBD activists. As soon as it's up and posted I will link it! So cool.
It's things like that that make me so happy I started blogging.

Well, I am going back to some studying before bed. Test on Monday and I never maximize my weekend as much as I'd like. Have a great night everyone. Thanks for reading. XO

It has been some time!!! Sorry it's been so long... Following my last blog post I was miserable and dealing with some JPouch issues and was in the worst mood for a few days and then life got in the way. I saw my surgeon last week and was basically a wreck. I wasn't sleeping because my skin was so raw and was weeping. NOTHING I did was working. The pain and the spasms kept me up or woke me up multiple times per night. I had lost a very small amount of blood a few times, and after everything I've been through, one drop and I am in an internal panic. I was near a breaking point from exhaustion. My surgeon comes in the room and I just started crying. He didn't know what to do. I launched into my tirade about my misery and exhaustion and just kept crying. He looks at me after I stopped for a second, and says, "Lisa, I don't know how to handle this with you. You are one of the strongest people I have ever treated, with one of the worst cases of UC, and you always have humor and a joke. I can't handle this side of you. I'm going to fix it". Well, naturally that made me cry harder and then lucky me....... I got to have an internal exam. It was my lucky day. Whoop whoop. Once again I will reiterate, I have no shame, dignity or modesty left... LONG GONE!!
So, he prescribes me Valium, more Flexeril(yeah, who knew digestive diseases would get you the good stuff), lidocaine gel(use your imagination) and a topical cream. I'm seriously a walking pharmacy. Want to know how often I fill prescriptions? They don't even glance at my license for a controlled substance anymore because THEY KNOW ME. Crazy. But I digress....
I felt better after leaving the office because my surgeon is great. He will listen, and keep trying to fix whatever the problem is. So many doctors dismiss their patients and are arrogant. I get none of that with mine and it's wonderful.
In the meantime I started classes and it is kicking my ass. A lot of work. A lot of material. It's scary. I am having my moments of being overwhelmed especially when my 18 month old is going nuts, tearing through the house and I'm trying to study tissues samples!! Yikes. No bueno. On top of it, my sleep is very broken which makes the mornings feel like torture. I'm trying to adjust. One thing that is so awesome that most will find weird is that Hubs installed a retro fit Bidet on our master bathroom toilet. OMG seriously, it is amazing!! Everyone should have one. Seriously. Go Bidet. It has changed my life now that I have a JPouch and the skin issues that go along with it as I've explained before.
Anyway- that's been my big exciting news. So great.
Oh, another awesome thing is I am going to be a guest blogger for http://thegreatbowelmovement.org/. I am so excited. They are a great little thing with awesome Tshirts like the one I have that says, "Ask me about my Ostomy". Awareness, awareness and conversation. So important to us IBD activists. As soon as it's up and posted I will link it! So cool.
It's things like that that make me so happy I started blogging.

Well, I am going back to some studying before bed. Test on Monday and I never maximize my weekend as much as I'd like. Have a great night everyone. Thanks for reading. XO

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.

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.

So Giddy!! Kinda...

Well, well- I saw my surgeon today. Good news! We are moving ahead with the enema thing(if enemas can be good news), to check if my j pouch healed correctly and there are no issues. I'm very anxious and stressed about it, not gonna lie. Someone giving you an enema is not pleasant. It out right sucks. IBD sucks because it's generally a part of some treatment plans, or in my case, was needed when I was admitted and required a scope ASAP. No time to prep!! I'd take prep over a forced water enema while bleeding, and in pain ANYDAY!!!
So, as exciting as that is because it's one step closer to my reversal, it is still horrifying. Don't worry. I got my 5mg Valium script all ready to go to calm me the eff down. So, assuming everything is just swell in my newly, custom built 'semi-colon', we are on to scheduling surgery!! Humpty Dumpty Lisa is going to get put back together. Rock on!
Ideally, he'll be able to fit me into his schedule the first week of September so I can travel sans bag and not deal with the TSA(I have a previous blog about this concern).  Let's get real...there's no way that's going to happen. He's pretty busy. If I can't have surgery that first week than it will be after my trip. It won't kill me to wait, but I was looking forward to traveling without all my ostomy gear, in addition to, two kids. It would have been a nice early birthday present to be put back together!
So I haven't blogged in a bit as summer is winding down. Trying to fit some stuff in now that it's not 105 everyday. The 90s feel refreshing! Have had some great T storms. I never liked rain until I moved here. I love when it absolutely pours!
Here was the sunset the other night through the storm clouds.

It was a pretty cool sky. One of these nights I'll pull the serious camera out and try to catch some lightening. I swear.
It's so nice to feel 'normal'. My surgeon today said I looked so healthy. I feel healthy. I went for a walk/run the other morning. I seriously almost died. Full on respiratory failure pushing a jogging stroller. I'm such an out of shape fatty. I hurt for two days. It was *awesome*.  Once the next surgery is done I need to get on track.
I'm already stressed about my trip to NY. Vacation shouldn't be stressful leading up to it. I don't know where we are staying. Carseat and #2 sleeping arrangements are still up in the air. No plans are made. I have very little time to fit in what I want to do and who I want to see. STRESSED. Something's not right with that scenario. Hoping it all works out and comes together. I'm a planner. I can't stand not knowing what's going on. Makes me nuts.
We went to the pool the other morning before it got too hot (that might not make sense to a lot of people but 100 degrees is too hot to swim. Seriously). It was nice. #2 loves the water. Was testing out what # can do because I'm taking her to try out for the McKinney swim club. It's the one activity she really really enjoys and she's pretty good so I need to move on it. She's gotten LAZY! It's obnoxious.
Here's me at the pool, rocking my ostomy bag, decorated and in your face!!

It's amazing what a little zebra print duck tape will do! ;-) I am pasty looking... but I'm actually tan. Luckily I'm not anemic anymore because I can't afford to lose anymore color!
Ok, I'm off to watch a movie with my man.
Be confident. Don't let the little things get you down. Give yourself some credit and be your own cheerleader.
And to all the young(er) girls--- you are not fat. You are not ugly. One day when you are *old* and 34 like me, you will wonder when you got fine lines and why in the world you hated your body when you were 20! Enjoy it. Life is good. You're too young to hate what you see in the mirror. Love yourself or no one will love you like you deserve to be loved.
That's all. I'm out.
XO

Well, well- I saw my surgeon today. Good news! We are moving ahead with the enema thing(if enemas can be good news), to check if my j pouch healed correctly and there are no issues. I'm very anxious and stressed about it, not gonna lie. Someone giving you an enema is not pleasant. It out right sucks. IBD sucks because it's generally a part of some treatment plans, or in my case, was needed when I was admitted and required a scope ASAP. No time to prep!! I'd take prep over a forced water enema while bleeding, and in pain ANYDAY!!!
So, as exciting as that is because it's one step closer to my reversal, it is still horrifying. Don't worry. I got my 5mg Valium script all ready to go to calm me the eff down. So, assuming everything is just swell in my newly, custom built 'semi-colon', we are on to scheduling surgery!! Humpty Dumpty Lisa is going to get put back together. Rock on!
Ideally, he'll be able to fit me into his schedule the first week of September so I can travel sans bag and not deal with the TSA(I have a previous blog about this concern).  Let's get real...there's no way that's going to happen. He's pretty busy. If I can't have surgery that first week than it will be after my trip. It won't kill me to wait, but I was looking forward to traveling without all my ostomy gear, in addition to, two kids. It would have been a nice early birthday present to be put back together!
So I haven't blogged in a bit as summer is winding down. Trying to fit some stuff in now that it's not 105 everyday. The 90s feel refreshing! Have had some great T storms. I never liked rain until I moved here. I love when it absolutely pours!
Here was the sunset the other night through the storm clouds.

It was a pretty cool sky. One of these nights I'll pull the serious camera out and try to catch some lightening. I swear.
It's so nice to feel 'normal'. My surgeon today said I looked so healthy. I feel healthy. I went for a walk/run the other morning. I seriously almost died. Full on respiratory failure pushing a jogging stroller. I'm such an out of shape fatty. I hurt for two days. It was *awesome*.  Once the next surgery is done I need to get on track.
I'm already stressed about my trip to NY. Vacation shouldn't be stressful leading up to it. I don't know where we are staying. Carseat and #2 sleeping arrangements are still up in the air. No plans are made. I have very little time to fit in what I want to do and who I want to see. STRESSED. Something's not right with that scenario. Hoping it all works out and comes together. I'm a planner. I can't stand not knowing what's going on. Makes me nuts.
We went to the pool the other morning before it got too hot (that might not make sense to a lot of people but 100 degrees is too hot to swim. Seriously). It was nice. #2 loves the water. Was testing out what # can do because I'm taking her to try out for the McKinney swim club. It's the one activity she really really enjoys and she's pretty good so I need to move on it. She's gotten LAZY! It's obnoxious.
Here's me at the pool, rocking my ostomy bag, decorated and in your face!!

It's amazing what a little zebra print duck tape will do! ;-) I am pasty looking... but I'm actually tan. Luckily I'm not anemic anymore because I can't afford to lose anymore color!
Ok, I'm off to watch a movie with my man.
Be confident. Don't let the little things get you down. Give yourself some credit and be your own cheerleader.
And to all the young(er) girls--- you are not fat. You are not ugly. One day when you are *old* and 34 like me, you will wonder when you got fine lines and why in the world you hated your body when you were 20! Enjoy it. Life is good. You're too young to hate what you see in the mirror. Love yourself or no one will love you like you deserve to be loved.
That's all. I'm out.
XO

I seriously forgot...I like that.

The last few days I've had quite a few moments where I have forgotten about my ostomy and my bag. Granted, it has been when the bag was empty so there was no pull or weight to it on my abdomen. But truly, my body was not in the forefront of my mind on various occasions. To 'normal' people it probably doesn't mean much, but as a sick person who for almost 4 years, has been so physically self aware at all times it's unbelievable. Everything you see, and do is secondary to how you feel.  Let me explain. For going on 4 years I have 24/7 been keenly aware of my body, my intestinal processes, my pain level and the proximity to the nearest bathroom. For the most part I knew exactly what part of my guts were working, when. Who can say that? Even at night when I slept, the pain from my disease has crept in to my dreams. If I went to bed pain free, I would dream I was being stabbed or hurt and in severe pain, and wake up in pain. It had started while I was asleep. I guess my body wanted me to pop a pain pill!!
 Going to a mall was very often, not an option, because we all know you need to take a cab to the bathrooms in malls and department stores. They are always half a mile a way. When you have IBD that is a half mile too far. Sometimes, 2 feet is too far, too late. Every decision I made during that time was weighed and measured carefully in terms of the situation. Car ride? How far, how long? Go for a walk? Sure, up and down our block because if I'm too far it might be a disaster. A movie? Nah- I'll rent that shit!! Theatre bathrooms are always gross!!The smallest and most basic activities and decisions were shadowed by how bad my flare was that day. It controlled my life. If you could even say I had a life.
 When you are chronically ill you are aware of the most minuscule bump in the road while driving. I seriously used to get shooting intestinal pains from it. The bounce. The seatbelt. I've had canker sores so bad that it was all I could do all day was be overwhelmed by the pain. I couldn't think, or accomplish anything. Forget speaking. Anytime I would attempt to eat out it was a game of what would work, and what would kill me. Many times I would not make it home after eating out. Hell, I wouldn't make it out of the restaurant. Eating was Russian Roulette.
I had never been a self conscious person, but being sick gave that to me as a big lame gift. I was self conscious when I was 98lbs, underweight and bony. I had bruises from IVs and I could feel every eye wondering what my story was. I was self conscious when I was on steroids and then my weight swung the other way and I was the heaviest I had ever been. Bigger than when I was pregnant. My face blew up until I would stare at myself and not know who I was. I was self conscious of how uncomfortable I was in that body. It didn't feel like mine. I felt trapped. Even now, I'm a little lighter than my normal, but I am aware (not self conscious) everyday of my bag and my ostomy. Especially when it's burning or itching. I feel it puff up and alter how my clothes fit. If I'm wearing the belt, I feel that especially in the heat.
All this is why it has been so amazing that the fact that I have an ostomy has disappeared from my mind, even for a second, more than once. It's not like I forgot, it's just that I stopped being hyper aware for that moment. I think it is because I have my life back, for the most part. The pain is gone, the fatigue, the arthritis, the canker sores, the blood loss, the urgency. Gone. Life is as it was. It's like I never had UC. In those few fleeting moments I let it go. The history disappeared. Looking at my body right now is the only way I know I was that sick. Looking at the scar and ostomy. Otherwise, it's like my health hit rewind. I'm not 100%, don't get me wrong, but if I had to stay at this point and this moment I would be happy.
It is incredible to think that a few weeks ago I was crying and frustrated and not knowing if I could make it. Now I could probably change my wafer and bag in the dark with one hand. No kidding. I don't even think about it anymore.
I've learned my self awareness and self consciousness are not always partners in crime. As I've gotten healthier the self consciousness has dropped off. Even the physical awareness has tapered. I still know more about guts, autoimmune disease and meds than I ever imagined I would but at least for the moment,
I have more a level playing field. My guts (or lack of) don't determine my days anymore. I can focus on real life stuff, and not the pain. I don't have to be afraid to be across the mall from the restroom. I'm not afraid to go out to dinner or sit through a 3 hour class.
I could easily still be fighting, and losing. I was losing physically, mentally and emotionally. I was just barely going through days. I wasn't enjoying them. I couldn't enjoy them. Now, I'm taking back over. Me forgetting my Stupid Stoma for a moment showed me that. I've got more going on than my ailments. They ride shotgun now. I'm back behind the wheel. =-)

Healing is a matter of time, but it is sometimes also a matter of opportunity.
Hippocrates

Me, not aware of my stoma or bag. For the moment! ------->

The last few days I've had quite a few moments where I have forgotten about my ostomy and my bag. Granted, it has been when the bag was empty so there was no pull or weight to it on my abdomen. But truly, my body was not in the forefront of my mind on various occasions. To 'normal' people it probably doesn't mean much, but as a sick person who for almost 4 years, has been so physically self aware at all times it's unbelievable. Everything you see, and do is secondary to how you feel.  Let me explain. For going on 4 years I have 24/7 been keenly aware of my body, my intestinal processes, my pain level and the proximity to the nearest bathroom. For the most part I knew exactly what part of my guts were working, when. Who can say that? Even at night when I slept, the pain from my disease has crept in to my dreams. If I went to bed pain free, I would dream I was being stabbed or hurt and in severe pain, and wake up in pain. It had started while I was asleep. I guess my body wanted me to pop a pain pill!!
 Going to a mall was very often, not an option, because we all know you need to take a cab to the bathrooms in malls and department stores. They are always half a mile a way. When you have IBD that is a half mile too far. Sometimes, 2 feet is too far, too late. Every decision I made during that time was weighed and measured carefully in terms of the situation. Car ride? How far, how long? Go for a walk? Sure, up and down our block because if I'm too far it might be a disaster. A movie? Nah- I'll rent that shit!! Theatre bathrooms are always gross!!The smallest and most basic activities and decisions were shadowed by how bad my flare was that day. It controlled my life. If you could even say I had a life.
 When you are chronically ill you are aware of the most minuscule bump in the road while driving. I seriously used to get shooting intestinal pains from it. The bounce. The seatbelt. I've had canker sores so bad that it was all I could do all day was be overwhelmed by the pain. I couldn't think, or accomplish anything. Forget speaking. Anytime I would attempt to eat out it was a game of what would work, and what would kill me. Many times I would not make it home after eating out. Hell, I wouldn't make it out of the restaurant. Eating was Russian Roulette.
I had never been a self conscious person, but being sick gave that to me as a big lame gift. I was self conscious when I was 98lbs, underweight and bony. I had bruises from IVs and I could feel every eye wondering what my story was. I was self conscious when I was on steroids and then my weight swung the other way and I was the heaviest I had ever been. Bigger than when I was pregnant. My face blew up until I would stare at myself and not know who I was. I was self conscious of how uncomfortable I was in that body. It didn't feel like mine. I felt trapped. Even now, I'm a little lighter than my normal, but I am aware (not self conscious) everyday of my bag and my ostomy. Especially when it's burning or itching. I feel it puff up and alter how my clothes fit. If I'm wearing the belt, I feel that especially in the heat.
All this is why it has been so amazing that the fact that I have an ostomy has disappeared from my mind, even for a second, more than once. It's not like I forgot, it's just that I stopped being hyper aware for that moment. I think it is because I have my life back, for the most part. The pain is gone, the fatigue, the arthritis, the canker sores, the blood loss, the urgency. Gone. Life is as it was. It's like I never had UC. In those few fleeting moments I let it go. The history disappeared. Looking at my body right now is the only way I know I was that sick. Looking at the scar and ostomy. Otherwise, it's like my health hit rewind. I'm not 100%, don't get me wrong, but if I had to stay at this point and this moment I would be happy.
It is incredible to think that a few weeks ago I was crying and frustrated and not knowing if I could make it. Now I could probably change my wafer and bag in the dark with one hand. No kidding. I don't even think about it anymore.
I've learned my self awareness and self consciousness are not always partners in crime. As I've gotten healthier the self consciousness has dropped off. Even the physical awareness has tapered. I still know more about guts, autoimmune disease and meds than I ever imagined I would but at least for the moment,
I have more a level playing field. My guts (or lack of) don't determine my days anymore. I can focus on real life stuff, and not the pain. I don't have to be afraid to be across the mall from the restroom. I'm not afraid to go out to dinner or sit through a 3 hour class.
I could easily still be fighting, and losing. I was losing physically, mentally and emotionally. I was just barely going through days. I wasn't enjoying them. I couldn't enjoy them. Now, I'm taking back over. Me forgetting my Stupid Stoma for a moment showed me that. I've got more going on than my ailments. They ride shotgun now. I'm back behind the wheel. =-)

Healing is a matter of time, but it is sometimes also a matter of opportunity.
Hippocrates

Me, not aware of my stoma or bag. For the moment! ------->

Ostomy, Travel, and the Ever Questionable TSA.

I have a flight booked to go to NY in September to visit family and friends. It's also my Gram's 90th bday. I'm leaving the end of September so me getting my reversal done really is of the essence. If I can't the time won't put me off as much as the knowledge that I will have to deal with the TSA with an ostomy. I have started researching and reading to see where their boundaries lay and to see what kinds of instances pop up with them being outside of their rights. It really has me on edge, primarily for my return flight as I will be flying alone with a 7 year old and a 1 year old. The last thing I need is them pulling me to the side and messing with me and my stupid stoma. I have seriously begun running scenarios in my head. Almost as if practicing responses and what not. Anyone ever do that??
Trust me, I have read what they can't do and if they attempt I will probably end up on the no fly list!! I know I could be stressing myself out for nothing but it's just something I have to prepare for. As of this moment, all I know, is that I will still have my ileostomy. So I am planning accordingly. I found a couple of good sites and of course the TSA site that states their boundaries. Naturally, I have also found the horror stories of them causing bag leaks, demanding people undressing, asking to examine in the bag and the stoma.... Those did not help my frame of mind.
Travelling with kids is stressful enough without this additional worry. And like I said, I will be taking one leg of the trip alone with two kids. I don't even know how I'm going to carry and manage gear much less deal with a TSA agent trying to molest my stoma! I'm the only one that can mess with my stoma. Even my surgeon hasn't seen it in months!!
Ugh- STRESS! And seriously for no reason. Hoping for some good news regarding letdown surgery in the next few weeks. Maybe all this worry is for nothing. Ideally that will be the case. What's that saying- Plan for the worst, hope for the best. Yep- that's all me. I'm apparently planning defensive tactics in the event Lisa Vs TSA. Lisa always wins! ;-)

I have a flight booked to go to NY in September to visit family and friends. It's also my Gram's 90th bday. I'm leaving the end of September so me getting my reversal done really is of the essence. If I can't the time won't put me off as much as the knowledge that I will have to deal with the TSA with an ostomy. I have started researching and reading to see where their boundaries lay and to see what kinds of instances pop up with them being outside of their rights. It really has me on edge, primarily for my return flight as I will be flying alone with a 7 year old and a 1 year old. The last thing I need is them pulling me to the side and messing with me and my stupid stoma. I have seriously begun running scenarios in my head. Almost as if practicing responses and what not. Anyone ever do that??
Trust me, I have read what they can't do and if they attempt I will probably end up on the no fly list!! I know I could be stressing myself out for nothing but it's just something I have to prepare for. As of this moment, all I know, is that I will still have my ileostomy. So I am planning accordingly. I found a couple of good sites and of course the TSA site that states their boundaries. Naturally, I have also found the horror stories of them causing bag leaks, demanding people undressing, asking to examine in the bag and the stoma.... Those did not help my frame of mind.
Travelling with kids is stressful enough without this additional worry. And like I said, I will be taking one leg of the trip alone with two kids. I don't even know how I'm going to carry and manage gear much less deal with a TSA agent trying to molest my stoma! I'm the only one that can mess with my stoma. Even my surgeon hasn't seen it in months!!
Ugh- STRESS! And seriously for no reason. Hoping for some good news regarding letdown surgery in the next few weeks. Maybe all this worry is for nothing. Ideally that will be the case. What's that saying- Plan for the worst, hope for the best. Yep- that's all me. I'm apparently planning defensive tactics in the event Lisa Vs TSA. Lisa always wins! ;-)

Questions, comments, and concerns are useless.

I've been having some anxiety driven days. A lot of self doubt and maybe a little mourning for the time I've lost. I have been sick for over three years. I'll never get that time back. I know there are many who have been sick much longer but for me this has been enough. It was enough a year ago. I can't imagine letting this shit drag on for 10+ years and not putting my foot down and surgically doing something about it. Even with the minor issues I have dealing with post OP stuff, it beats the hell out of active UC every single day of my life. The worst part about severe UC wasn't the pain. It wasn't the blood loss. It wasn't the lightheadedness or the meds or hundreds of dollars in copays. It wasn't even my hospitalizations or the urgency to go so intensely that you are running to the bathroom, pants half off almost in tears, begging the universe to hold off until you sit down. Nope. The worst part is the ignorance. The uninformed, the lack of understanding and the assumptions.
For instance, I applied for disability and was denied because the government says I should be able to work in a medical office as a receptionist. Well, I don't know what doctor who would keep a receptionist who is always in the bathroom multiple times a day in pain, for up to 45 minutes at a time. Hard to answer phones and interact with patients from the shitter. When I say I used to be in the bathroom all day, I'm not exaggerating. People hear and make mention of IBD and it's dismissed as a tummy ache and some diarrhea. No one gets how disabling this effing disease is. I've missed years of working, travel, and normal life.
As nice as having no agenda is, I miss the financial independence and freedom I had when I worked. I decided to go back to school for nursing because I wanted to impact people who are in unfortunate circumstances. I want to help people with new ostomies feel OK and move forward in a positive manner. I can be an ostomy nurse better than anyone and I have the scars to prove it. My doubts are filtering in. School will be a few years. This coming semester is dead because of another surgery. Is it realistic to pursue it? Do you ever feel you are supposed to be doing something amazing and impactful but you don't know how to get there? I'm going to be 35 in just over a month. What have I done with my blank slate of life? I don't know anymore. I'm beginning to wonder what the hell I'm supposed to do. What am I contributing. What strengths do I have that I can really put to use? So many things feel just beyond my reach. Life gets in the way. My illness gets in the way. I have big things I want to do but not sure what they are. Vague dreams perhaps. It's hard to fine tune and make things happen through pain and weakness and illness. I guess I'm pissed off about it. There is no comment box in life. No one will get back to me to resolve the problem. Sometimes it isn't fair. I have grown a bit stronger but at the same time more doubtful and hesitant. I keep waiting for some complication or setback. Something to once more, derail my life. Who can I email about all this? I need tech support for my life.

I've been having some anxiety driven days. A lot of self doubt and maybe a little mourning for the time I've lost. I have been sick for over three years. I'll never get that time back. I know there are many who have been sick much longer but for me this has been enough. It was enough a year ago. I can't imagine letting this shit drag on for 10+ years and not putting my foot down and surgically doing something about it. Even with the minor issues I have dealing with post OP stuff, it beats the hell out of active UC every single day of my life. The worst part about severe UC wasn't the pain. It wasn't the blood loss. It wasn't the lightheadedness or the meds or hundreds of dollars in copays. It wasn't even my hospitalizations or the urgency to go so intensely that you are running to the bathroom, pants half off almost in tears, begging the universe to hold off until you sit down. Nope. The worst part is the ignorance. The uninformed, the lack of understanding and the assumptions.
For instance, I applied for disability and was denied because the government says I should be able to work in a medical office as a receptionist. Well, I don't know what doctor who would keep a receptionist who is always in the bathroom multiple times a day in pain, for up to 45 minutes at a time. Hard to answer phones and interact with patients from the shitter. When I say I used to be in the bathroom all day, I'm not exaggerating. People hear and make mention of IBD and it's dismissed as a tummy ache and some diarrhea. No one gets how disabling this effing disease is. I've missed years of working, travel, and normal life.
As nice as having no agenda is, I miss the financial independence and freedom I had when I worked. I decided to go back to school for nursing because I wanted to impact people who are in unfortunate circumstances. I want to help people with new ostomies feel OK and move forward in a positive manner. I can be an ostomy nurse better than anyone and I have the scars to prove it. My doubts are filtering in. School will be a few years. This coming semester is dead because of another surgery. Is it realistic to pursue it? Do you ever feel you are supposed to be doing something amazing and impactful but you don't know how to get there? I'm going to be 35 in just over a month. What have I done with my blank slate of life? I don't know anymore. I'm beginning to wonder what the hell I'm supposed to do. What am I contributing. What strengths do I have that I can really put to use? So many things feel just beyond my reach. Life gets in the way. My illness gets in the way. I have big things I want to do but not sure what they are. Vague dreams perhaps. It's hard to fine tune and make things happen through pain and weakness and illness. I guess I'm pissed off about it. There is no comment box in life. No one will get back to me to resolve the problem. Sometimes it isn't fair. I have grown a bit stronger but at the same time more doubtful and hesitant. I keep waiting for some complication or setback. Something to once more, derail my life. Who can I email about all this? I need tech support for my life.

30 day self esteem challenge. Days 1-9

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


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


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


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




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


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


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


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




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


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


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


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

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

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


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


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

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


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




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

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


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


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


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




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


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


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


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




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


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


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


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

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

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


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


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

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


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




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

Grey out? Say what??

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

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

Here's the mini bag----->

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

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

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

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

Here's a FrankenBelly update...I know you've all been on the edge of your seat so I will oblige. =)

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

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

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

Here's the mini bag----->

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

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

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

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

Here's a FrankenBelly update...I know you've all been on the edge of your seat so I will oblige. =)

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