I had a very disgusting night.

I'm giving everyone fair warning. I'm about to talk about some gross shit. As opposed to not gross shit I guess. Whatever.

It's been a month since I've written. The one fabulous thing I did was get LASIK!! OMG! So freakin' great. My eyes weren't bad to begin with but to me they were. I was about 20/40 and -2.50 in contacts. My last checkup was 20/10!!! It is unreal to wake up and be able to see, and shower and not be blind or me to think I'm going to get some bacterial infection every time I would shower with contacts in. Yes, I know, but it happens. So now I can SEE!! I have a part of my body that isn't failing and causing me issues. I don't even know what to do about it. Wow. And daughter #2 broke my glasses the day after surgery. And I didn't even care!! =)


*** Grossness beginning***

So aside from my spectacular vision,  I have had the usual nonsense with living with a temporary ileostomy. Trying to figure out how to slow my output so it's not nasty water pouring out of me but not so thick that it'll cause issues. Yeah, I haven't found the right fix yet unless you count eating potato chips everyday. No kidding. The lomotil I have as a Rx doesn't quite do it. The Imodium is a joke. But if I eat chips everyday I am the closest thing to comfortable as I can get. Sleeping with an ostomy bag full of liquid is impossible. It sloshes around. It weighs 2lbs. No joke. It is truly disgusting and you are aware of it for every single second you are trying to "relax" and get some sleep. It doesn't go together well, hence I'm a #tiredhag.
Traveling with an ostomy is a nightmare for me. We went away for spring break for a week and I have to plan and think about so many things with an ostomy. I have yet to find wafers that don't blow and leak constantly so needing to travel and carry with me enough supplies by guessing what I could possibly need is a lot. You can't get anything at a drugstore. So I get paranoid and half a suitcase is ostomy supplies. I came close to not having enough this time. I started to panic over the weekend and came up with a plan to contact an ostomy nurse at a hospital in town. It would have been my only option in a pinch.

My ostomy was at the forefront of my mind every minute I was away. At the beach(especially), while we spent the day at a theme park, when we went to dinner at my parent's friend's house. Dealing with an ostomy incident away from my house makes me crazy. It makes me neurotic and upset and just so AWARE that I have issues. I love the beach. I could park my ass in the sand for 5 days straight and be fine. It's not the same dealing with this. It's hard to handle a wafer blowout in the sand. My enjoyment level is down. I feel restricted in my life. I know so many of my IBDer friends have permanent ostomies that they chose, or in some cases, had no choice. And I commend them for their day to day. I am amazed by those that scuba dive, run marathons, go camping etc... I can't picture myself doing any of that. Not in my condition. Not with the skin issues I have, the wafer issues I have and the output I have. Some days I'm afraid to run to the store because my wafers have been leaking nonstop.
So vacation was fun. I LOVE going away but at the same time felt the impact of what I have going on with an ostomy. We went to Universal and I had an explosion before we got into the park. That doesn't set my confidence level very high for the day. I hate that. But I enjoyed Butter Beer in the World of Harry Potter. ;)

So we get to the last few days. My rectal spasms are back and are so uncomfortable. They bring me to tears and it takes A LOT of pain to bring me to tears. I've built up a pretty high tolerance for pain over the years. My skin is raw. It's weeping, it's bleeding. My output is water. (Keep in mind "they" say a good output is mush like oatmeal. Yeah, right. Maybe about an hour every few days if I eat chips consistantly.) So I've been going through wafers like crazy. I try to hold off changing them very soon even if I know I have fluid that has leaked under and is eating my skin. The tradeoff is my skin getting eaten off in one small spot, or my skin getting ripped off from the wax in a larger area.(The wafer is wax and it melts onto your skin to seal it. They are meant to stay on easily up to 5 days so getting one off after a few hours is horrible.) It all sounds so fun doesn't it?? Wooooo-friggon-Hooooo!
All of these supplies are VERY expensive so making them last is important. I spend way too much money on all these supplies. So sometimes I suffer through the pain of a leaking wafer just to get another day out of it. I know that sounds nuts but I've become so accustomed to some sort of pain or discomfort that it isn't a big deal anymore.
Well today was just the suck of the suck. Burning skin. Spasms. Water output nonstop. Those things and changing a wafer DO NOT MIX. On a good day, once I get the old wafer off I can get cleaned, prepped and a new wafer on in 60 seconds. On a day like today I have no chance against the power of the small intestine's peristalsis. It won't stop. And with it being all liquid it makes it impossible to get the area dry before putting the new wafer on. So tonight with my skin burning so bad I couldn't take anymore, I managed to peel the wafer off, taking some skin with it. Here's a nice visual.

 So my skin's bleeding. I'm trying to get everything ready with one hand and deal with my skin with the other. Well, then the explosions started. I am not kidding when I say the force of the smooth muscle in your guts is insane. You will never see it unless you are *lucky* enough to have part of it sticking out of your abdomen. Mind you, you can't feel it doing it. It's creepy. There are no nerve endings. So I don't know its leaking until it hits skin or I see it. Tonight I was lucky enough to have that pain in the ass spray 2 feet across the bathroom. More than once. Absolutely amazing and completely disgusting at the same time. There is nothing to do to stop it. It was everywhere. Like a gross horror movie.
So after showering, barely getting the new wafer on before it sprayed again, I had to bleach the bathroom. I'm living the dream. Some days, like today, it is so apparent that this is my life.
 I will never NOT have issues. I know that sounds so negative but even getting reversed to my JPouch will not be fool proof. If it was I wouldn't have this ostomy again. It's a crap shoot, so to speak, and some days it feels like I have a short term issue and I'm just waiting for it to resolve itself. But the truth is, I have an autoimmune disease, I'm missing a major organ that you need to live well and be healthy. NOTHING will replace my colon or do it's job. And most people don't realize how important digestion is to their health. They don't know the impact of IBD. I know I've said in the past but, I've had people ask me very confused HOW I was anemic. Shitting blood in ridiculous amounts for months straight isn't something that occurs to people and even if it did they don't really get how much damage it causes.

But to all my healthy readers, how horrible do you feel from one night of diarrhea? From a week of the flu? Run down. Weak. Fatigued. Hurting internally. Imagine that every day of your life. With blood. With abdominal pain that sears through you like a hot poker. It's devastating. It's debilitating. It can be embarrassing. I'm generally a pretty confident person, but I will say my ostomy reduces that. My weak, fatigued body reduces that. My poor body image from weight fluctuations reduces that. And for me that is huge. SO when I have to fight with an ostomy, and have it halt my life the way it can, I know pushing to get reversed is what I need. I can be in pain anywhere. I can deal with that. I've done it. When an ileostomy wafer blows, and you have a mess and you are in the car, in the mall, at the beach, in a plane, that's what is halting and what is beyond my scope of handling.

I've been dreaming of my reversal. I'm so miserable like this. Hoping to get scoped in April. If it looks good, I want my reversal as soon as my finals are done. I'll leave school and drive to the O.R.
Sorry for my long windedness. Sorry for being Josie Grossie. I guess sometimes I glaze over the reality and how much it can suck and I just needed to put this out there. I smile and live my life and TRY not to let this whole mess of my life hold me back. I think I do pretty well, but tonight just hit me too hard. When you have a moment when you are alone and feel humiliated to yourself, you know that's something big.
Live well everyone. Be well. Love your guts and don't take your health for granted. Don't take having nothing hindering you for granted. Thanks for reading. XO.

I'm giving everyone fair warning. I'm about to talk about some gross shit. As opposed to not gross shit I guess. Whatever.

It's been a month since I've written. The one fabulous thing I did was get LASIK!! OMG! So freakin' great. My eyes weren't bad to begin with but to me they were. I was about 20/40 and -2.50 in contacts. My last checkup was 20/10!!! It is unreal to wake up and be able to see, and shower and not be blind or me to think I'm going to get some bacterial infection every time I would shower with contacts in. Yes, I know, but it happens. So now I can SEE!! I have a part of my body that isn't failing and causing me issues. I don't even know what to do about it. Wow. And daughter #2 broke my glasses the day after surgery. And I didn't even care!! =)


*** Grossness beginning***

So aside from my spectacular vision,  I have had the usual nonsense with living with a temporary ileostomy. Trying to figure out how to slow my output so it's not nasty water pouring out of me but not so thick that it'll cause issues. Yeah, I haven't found the right fix yet unless you count eating potato chips everyday. No kidding. The lomotil I have as a Rx doesn't quite do it. The Imodium is a joke. But if I eat chips everyday I am the closest thing to comfortable as I can get. Sleeping with an ostomy bag full of liquid is impossible. It sloshes around. It weighs 2lbs. No joke. It is truly disgusting and you are aware of it for every single second you are trying to "relax" and get some sleep. It doesn't go together well, hence I'm a #tiredhag.
Traveling with an ostomy is a nightmare for me. We went away for spring break for a week and I have to plan and think about so many things with an ostomy. I have yet to find wafers that don't blow and leak constantly so needing to travel and carry with me enough supplies by guessing what I could possibly need is a lot. You can't get anything at a drugstore. So I get paranoid and half a suitcase is ostomy supplies. I came close to not having enough this time. I started to panic over the weekend and came up with a plan to contact an ostomy nurse at a hospital in town. It would have been my only option in a pinch.

My ostomy was at the forefront of my mind every minute I was away. At the beach(especially), while we spent the day at a theme park, when we went to dinner at my parent's friend's house. Dealing with an ostomy incident away from my house makes me crazy. It makes me neurotic and upset and just so AWARE that I have issues. I love the beach. I could park my ass in the sand for 5 days straight and be fine. It's not the same dealing with this. It's hard to handle a wafer blowout in the sand. My enjoyment level is down. I feel restricted in my life. I know so many of my IBDer friends have permanent ostomies that they chose, or in some cases, had no choice. And I commend them for their day to day. I am amazed by those that scuba dive, run marathons, go camping etc... I can't picture myself doing any of that. Not in my condition. Not with the skin issues I have, the wafer issues I have and the output I have. Some days I'm afraid to run to the store because my wafers have been leaking nonstop.
So vacation was fun. I LOVE going away but at the same time felt the impact of what I have going on with an ostomy. We went to Universal and I had an explosion before we got into the park. That doesn't set my confidence level very high for the day. I hate that. But I enjoyed Butter Beer in the World of Harry Potter. ;)

So we get to the last few days. My rectal spasms are back and are so uncomfortable. They bring me to tears and it takes A LOT of pain to bring me to tears. I've built up a pretty high tolerance for pain over the years. My skin is raw. It's weeping, it's bleeding. My output is water. (Keep in mind "they" say a good output is mush like oatmeal. Yeah, right. Maybe about an hour every few days if I eat chips consistantly.) So I've been going through wafers like crazy. I try to hold off changing them very soon even if I know I have fluid that has leaked under and is eating my skin. The tradeoff is my skin getting eaten off in one small spot, or my skin getting ripped off from the wax in a larger area.(The wafer is wax and it melts onto your skin to seal it. They are meant to stay on easily up to 5 days so getting one off after a few hours is horrible.) It all sounds so fun doesn't it?? Wooooo-friggon-Hooooo!
All of these supplies are VERY expensive so making them last is important. I spend way too much money on all these supplies. So sometimes I suffer through the pain of a leaking wafer just to get another day out of it. I know that sounds nuts but I've become so accustomed to some sort of pain or discomfort that it isn't a big deal anymore.
Well today was just the suck of the suck. Burning skin. Spasms. Water output nonstop. Those things and changing a wafer DO NOT MIX. On a good day, once I get the old wafer off I can get cleaned, prepped and a new wafer on in 60 seconds. On a day like today I have no chance against the power of the small intestine's peristalsis. It won't stop. And with it being all liquid it makes it impossible to get the area dry before putting the new wafer on. So tonight with my skin burning so bad I couldn't take anymore, I managed to peel the wafer off, taking some skin with it. Here's a nice visual.

 So my skin's bleeding. I'm trying to get everything ready with one hand and deal with my skin with the other. Well, then the explosions started. I am not kidding when I say the force of the smooth muscle in your guts is insane. You will never see it unless you are *lucky* enough to have part of it sticking out of your abdomen. Mind you, you can't feel it doing it. It's creepy. There are no nerve endings. So I don't know its leaking until it hits skin or I see it. Tonight I was lucky enough to have that pain in the ass spray 2 feet across the bathroom. More than once. Absolutely amazing and completely disgusting at the same time. There is nothing to do to stop it. It was everywhere. Like a gross horror movie.
So after showering, barely getting the new wafer on before it sprayed again, I had to bleach the bathroom. I'm living the dream. Some days, like today, it is so apparent that this is my life.
 I will never NOT have issues. I know that sounds so negative but even getting reversed to my JPouch will not be fool proof. If it was I wouldn't have this ostomy again. It's a crap shoot, so to speak, and some days it feels like I have a short term issue and I'm just waiting for it to resolve itself. But the truth is, I have an autoimmune disease, I'm missing a major organ that you need to live well and be healthy. NOTHING will replace my colon or do it's job. And most people don't realize how important digestion is to their health. They don't know the impact of IBD. I know I've said in the past but, I've had people ask me very confused HOW I was anemic. Shitting blood in ridiculous amounts for months straight isn't something that occurs to people and even if it did they don't really get how much damage it causes.

But to all my healthy readers, how horrible do you feel from one night of diarrhea? From a week of the flu? Run down. Weak. Fatigued. Hurting internally. Imagine that every day of your life. With blood. With abdominal pain that sears through you like a hot poker. It's devastating. It's debilitating. It can be embarrassing. I'm generally a pretty confident person, but I will say my ostomy reduces that. My weak, fatigued body reduces that. My poor body image from weight fluctuations reduces that. And for me that is huge. SO when I have to fight with an ostomy, and have it halt my life the way it can, I know pushing to get reversed is what I need. I can be in pain anywhere. I can deal with that. I've done it. When an ileostomy wafer blows, and you have a mess and you are in the car, in the mall, at the beach, in a plane, that's what is halting and what is beyond my scope of handling.

I've been dreaming of my reversal. I'm so miserable like this. Hoping to get scoped in April. If it looks good, I want my reversal as soon as my finals are done. I'll leave school and drive to the O.R.
Sorry for my long windedness. Sorry for being Josie Grossie. I guess sometimes I glaze over the reality and how much it can suck and I just needed to put this out there. I smile and live my life and TRY not to let this whole mess of my life hold me back. I think I do pretty well, but tonight just hit me too hard. When you have a moment when you are alone and feel humiliated to yourself, you know that's something big.
Live well everyone. Be well. Love your guts and don't take your health for granted. Don't take having nothing hindering you for granted. Thanks for reading. XO.

Spring Break of Yuck

PHEW!! Here I am.. so completely late with a post but after I got back from our Spring Break trip to Florida, school went into overdrive and I had no time at all. School has been a killer. Rethinking my options and coming up with a Plan B. I am just not intuitively a "science person". I am struggling. Big time. What I want to do and what I'm cut out to do don't seem to be meshing very well. It is such a vigorous and competitive program, it's unreal. Lots of frustration. It's making me crazy!
I had load of work due right before break that was just overwhelming. I was so happy to have class end that Thursday and was looking forward to flying to Florida for a few days and have no stress, no agenda. Sounds perfect, right? Too good to be true? Well, duh. Naturally!!
Me with the girls on the plane----->

We got into Daytona Beach on Friday and had a great weekend. It was a bit colder than I like but we got to the beach and everything was going great. I rocked a bikini with my scars and my near death skin tone. Exhibit A--->

Then Monday hit. The 19 month old was exploding out of both ends. No fever. Super clingy and barfing so I was in luck and she was puking all over me. After being covered in crap and poop for about 24 hours, I basically was just waiting for me to get it. How could I avoid a virus that I was essentially covered in? I hoped it would pass quickly for Daughter #2 and skip me so we could have the last day or so of a nice vacay. Hahahahahahahaah, YEAH RIGHT!!! I got it. Bad. D #2's had stopped by Tuesday morning for the most part. I was still feeling A-OK Tuesday evening. Then 1am hit and the queasiness started. Awesome. I laid there just hoping it would pass. Maybe I ate too much. Anything. Nope. By 2am I was a wreck. Violently throwing up and running for the john. Sometimes simultaneously. I know. Isn't that a great visual. You're welcome. =)
By 7am I found out my mom had it too. By 730am I was seeing spots and could barely stand up. Let's keep in mind I have no colon, which is your water, salt and electrolyte absorber. So I'm already prone to dehydration on a good day. The Norovirus explosions were killing me. If I took one sip of Gatorade, I would throw it right up. It wasn't looking good. After years of being malnourished, dehydrated and anemic, I know when I need medical attention and when I'm within seconds of blacking out. It's not even a scary feeling anymore. Being a chronically ill person makes you weird. But I digress. Let's keep in mind that I was supposed to fly out at 230p. Doubtful. So a plan was made for me to get IV fluids and my Hubs back in TX was calling Delta to find out how to change my flight due to medical reasons. I was so out of it I couldn't form a comprehensive thought. HORRIBLE. Luckily my mom works for a primary care doctor who does IVs at the office so they awesomely fit me in during their lunch hour to top off my fluids. My BP was 84/62 and resting HR 119. None of which is a good thing combined. So yeah- and naturally my crap ass veins coupled with the dehydration made it so it took 5 sticks and an hour to even get the IV in. I was hurting. Those of you with good veins should feel lucky. Having someone dig around in a vein to get it hurts like a BITCH. Not to mention the sweet junkie bruises that get left behind. I had some tears of frustration, not going to lie. I get so pissed off at times like that. The simplest thing like getting an IV threaded turns into a hour long nightmare.
I was having horrible cramps and spasms which led my brain into a spiral of fear because it felt like I was flaring again. Freaked me out. I was really upset. Laying there that day does nothing but solidify the fact that I'll never be "NORMAL". I will always be fighting and battling something because my body is down one major organ. My anatomy is forever altered which brings on it's own set of bullshit problems.  Anyone looking at me would never guess my internal issues. I'm sure people rolled their eyes that I needed fluids that easily. Whatever. I'm over what people think. That 24 hour Norovirus knocked me down for easily a week. Even going on two weeks later, my spasms are continuing worse than before and I am hurting. I've upped my muscle relaxers and got more pain pills from my surgeon who I happened to see the day after I got back. All from that stupid virus. I joked that I didn't even puke that much on Spring Break in college. Seriously. Nasty business. If you don't know much about it, I'm including a link my Hubs found. It's a very smart virus. Too smart. My oldest daughter never got sick, but Hubs did a few days after I got home. Misery.
Here's the link--->>>>   http://phenomena.nationalgeographic.com/2013/01/02/the-norovirus-a-study-in-puked-perfection/
It's a very interesting read and scary all at once. These tiny little bastards could wipe us out if they wanted to.

Here are some pics from the trip before everyone started hurling. Enjoy and thanks for reading! XO

PHEW!! Here I am.. so completely late with a post but after I got back from our Spring Break trip to Florida, school went into overdrive and I had no time at all. School has been a killer. Rethinking my options and coming up with a Plan B. I am just not intuitively a "science person". I am struggling. Big time. What I want to do and what I'm cut out to do don't seem to be meshing very well. It is such a vigorous and competitive program, it's unreal. Lots of frustration. It's making me crazy!
I had load of work due right before break that was just overwhelming. I was so happy to have class end that Thursday and was looking forward to flying to Florida for a few days and have no stress, no agenda. Sounds perfect, right? Too good to be true? Well, duh. Naturally!!
Me with the girls on the plane----->

We got into Daytona Beach on Friday and had a great weekend. It was a bit colder than I like but we got to the beach and everything was going great. I rocked a bikini with my scars and my near death skin tone. Exhibit A--->

Then Monday hit. The 19 month old was exploding out of both ends. No fever. Super clingy and barfing so I was in luck and she was puking all over me. After being covered in crap and poop for about 24 hours, I basically was just waiting for me to get it. How could I avoid a virus that I was essentially covered in? I hoped it would pass quickly for Daughter #2 and skip me so we could have the last day or so of a nice vacay. Hahahahahahahaah, YEAH RIGHT!!! I got it. Bad. D #2's had stopped by Tuesday morning for the most part. I was still feeling A-OK Tuesday evening. Then 1am hit and the queasiness started. Awesome. I laid there just hoping it would pass. Maybe I ate too much. Anything. Nope. By 2am I was a wreck. Violently throwing up and running for the john. Sometimes simultaneously. I know. Isn't that a great visual. You're welcome. =)
By 7am I found out my mom had it too. By 730am I was seeing spots and could barely stand up. Let's keep in mind I have no colon, which is your water, salt and electrolyte absorber. So I'm already prone to dehydration on a good day. The Norovirus explosions were killing me. If I took one sip of Gatorade, I would throw it right up. It wasn't looking good. After years of being malnourished, dehydrated and anemic, I know when I need medical attention and when I'm within seconds of blacking out. It's not even a scary feeling anymore. Being a chronically ill person makes you weird. But I digress. Let's keep in mind that I was supposed to fly out at 230p. Doubtful. So a plan was made for me to get IV fluids and my Hubs back in TX was calling Delta to find out how to change my flight due to medical reasons. I was so out of it I couldn't form a comprehensive thought. HORRIBLE. Luckily my mom works for a primary care doctor who does IVs at the office so they awesomely fit me in during their lunch hour to top off my fluids. My BP was 84/62 and resting HR 119. None of which is a good thing combined. So yeah- and naturally my crap ass veins coupled with the dehydration made it so it took 5 sticks and an hour to even get the IV in. I was hurting. Those of you with good veins should feel lucky. Having someone dig around in a vein to get it hurts like a BITCH. Not to mention the sweet junkie bruises that get left behind. I had some tears of frustration, not going to lie. I get so pissed off at times like that. The simplest thing like getting an IV threaded turns into a hour long nightmare.
I was having horrible cramps and spasms which led my brain into a spiral of fear because it felt like I was flaring again. Freaked me out. I was really upset. Laying there that day does nothing but solidify the fact that I'll never be "NORMAL". I will always be fighting and battling something because my body is down one major organ. My anatomy is forever altered which brings on it's own set of bullshit problems.  Anyone looking at me would never guess my internal issues. I'm sure people rolled their eyes that I needed fluids that easily. Whatever. I'm over what people think. That 24 hour Norovirus knocked me down for easily a week. Even going on two weeks later, my spasms are continuing worse than before and I am hurting. I've upped my muscle relaxers and got more pain pills from my surgeon who I happened to see the day after I got back. All from that stupid virus. I joked that I didn't even puke that much on Spring Break in college. Seriously. Nasty business. If you don't know much about it, I'm including a link my Hubs found. It's a very smart virus. Too smart. My oldest daughter never got sick, but Hubs did a few days after I got home. Misery.
Here's the link--->>>>   http://phenomena.nationalgeographic.com/2013/01/02/the-norovirus-a-study-in-puked-perfection/
It's a very interesting read and scary all at once. These tiny little bastards could wipe us out if they wanted to.

Here are some pics from the trip before everyone started hurling. Enjoy and thanks for reading! XO