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.

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! ------->