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....