More Hurdles.

****** I started this entry about a week ago and just couldn't get my mind around it. There was a lot more to my hospital stay but I'm so mentally exhausted I can't recall details and all of it. I'm just too tired. So here's the gist of it anyway. ******


Hello all. I haven't written since my surgery on the 23rd. Recovery while in the hospital was brutal and since being home I just haven't had it in me. I'm hurting. I'm tired. Everything I do wipes me out for two days. My incision is hot pain. I'm sure the scar tissue adds to that. But I'll back the story up.
I went home to NY and ate like a pig the week before surgery and it was glorious. Pizza, Greek food, more pizza, chicken finger subs, oh my!! I had the best time with my cousins and seeing my Gram and a bunch of girls I miss a lot.
I came home Sunday and needed to be on liquids all day. I cheated and had breakfast Sunday morning b/c by now I know it was safe and I had time for it to be a nonissue. So let's just reference my meal at about 1130am Sunday.
My surgery was Monday morning. I arrived and got my IV and everything ready to go. All my Hossie flair and "fall risk" bracelet which is my personal fave.

Hospitals are cold. Yes, that's a scarf. I know it's summer.

Apparently they used some new pain blocking situation( the name escapes me) and has been shown to reduce use of opiates after surgery as it dulls/hinders pain receptors for 72 hours after surgery. If that's the case, I don't want to know what it would have felt like without it. I woke from surgery hurting and groggy. I had my PCA that allowed me to use it for a mini amount of Dilaudid every 8 minutes. It's such a low amount it's practically useless. Something like 1/100th of a milligram. I was allowed a push of .5mg of Dilaudid every 4 hours which would have been great except for lucky me, my blood pressure was way too low for them to give it to me. So for the most part I was suffering the first 3 days post Op. BP being 88/56 isn't gonna fly. Nope. So yeah. Just total shit. It didn't matter that my normal BP is like 90/70 on a good day. They wouldn't give me anything. So it wasn't until I was about 3-4 post OP when I finally got some relief. And they had me up and moving already. And was still nothing by mouth(NPO). Not even ice. Yeah. So fun. My first attempt at liquids with a bunch of Zofran was a disaster so that redid the clock in terms of me eating. The popsicle didn't make it and neither did the 3 tablespoons of broth. By then I was 5 days with nothing to eat. So I was pissed. And once again facing the possibility of an NG shoved down my nose and throat. Oh did I mention my hemoglobin level dropped to 7. Yeah that's transfusion level low. So all this was happening at once. IT NEVER GETS EASIER. Ever. NO matter how many times I've gone through this and am mentally prepared for starving for 4-5 days easily and then the pain of your guts working and/or NOT working, it is never easy. It is just horrible every time. Being attached to an IV pole and having no choice but to drop to the hospital floor and barf in the garbage can is insane. Because hospital floors #1 are so clean. I hit the call button and basically jumped. They raced in because they answered the call and I didn't respond.  #2 Meeting your next RN for the next 12 hours while face first in the trash is swell.
Luckily I didn't need a transfusion although I wouldn't have minded getting topped off because it makes me feel so great!
Finally-- 4 days after surgery I could handle liquids. Well, a sip here and there. GI surgery is just so brutal. Your guts don't have to work for months, the surgery shuts them down even more and then trying to get them to work again and not get sick is such a slow road. I've done it way too many times. So on day 5 post OP I got FULL liquids which is still slop but better than unidentifiable broth.
It's all just so exhausting. Being hungry and thirsty makes you nuts. I can't even remember how many times now I've gone 4,5,6 days with nothing to eat or drink. An ice chip here or there. It breaks you. It continually amazes me what I have gone through. I know I'm different now. I try hard not to let it happen but when so many days you have the shit end of a situation you get bitter. No matter how hard you try sometimes, it creeps in. You see things differently and react differently. You resent what you can't do normally anymore. You hate yourself. You feel betrayed by your own body. I have always lived my life in the moment. Ok, today I'm flaring. Ok right now I need surgery etc... but it's always been with a given idea that the funk will pass and things will be good again. After THIS surgery. AFTER this gets better. After 5 years of thinking things will be good after yet another issue, I don't know if I have IT anymore. I don't know how to explain it other than I've defeated myself. Kinda. I'm not done yet but I'm 3 weeks post Op and it's not like everything is perfect. I'm happier without the ostomy but I can't lie. I have moments where I definitely weigh the pros of having one. There are cons even with the best case scenario it would seem. Bummer.

But I'm pushing on. Dealing with being wiped out after doing something normal for a few hours. I have to. Being normal is costly. 1-2 days afterwards are useless. I'm a slug. I just need to get through THIS recovery and everything will be ok... right???

Thanks for reading. XO

****** I started this entry about a week ago and just couldn't get my mind around it. There was a lot more to my hospital stay but I'm so mentally exhausted I can't recall details and all of it. I'm just too tired. So here's the gist of it anyway. ******


Hello all. I haven't written since my surgery on the 23rd. Recovery while in the hospital was brutal and since being home I just haven't had it in me. I'm hurting. I'm tired. Everything I do wipes me out for two days. My incision is hot pain. I'm sure the scar tissue adds to that. But I'll back the story up.
I went home to NY and ate like a pig the week before surgery and it was glorious. Pizza, Greek food, more pizza, chicken finger subs, oh my!! I had the best time with my cousins and seeing my Gram and a bunch of girls I miss a lot.
I came home Sunday and needed to be on liquids all day. I cheated and had breakfast Sunday morning b/c by now I know it was safe and I had time for it to be a nonissue. So let's just reference my meal at about 1130am Sunday.
My surgery was Monday morning. I arrived and got my IV and everything ready to go. All my Hossie flair and "fall risk" bracelet which is my personal fave.

Hospitals are cold. Yes, that's a scarf. I know it's summer.

Apparently they used some new pain blocking situation( the name escapes me) and has been shown to reduce use of opiates after surgery as it dulls/hinders pain receptors for 72 hours after surgery. If that's the case, I don't want to know what it would have felt like without it. I woke from surgery hurting and groggy. I had my PCA that allowed me to use it for a mini amount of Dilaudid every 8 minutes. It's such a low amount it's practically useless. Something like 1/100th of a milligram. I was allowed a push of .5mg of Dilaudid every 4 hours which would have been great except for lucky me, my blood pressure was way too low for them to give it to me. So for the most part I was suffering the first 3 days post Op. BP being 88/56 isn't gonna fly. Nope. So yeah. Just total shit. It didn't matter that my normal BP is like 90/70 on a good day. They wouldn't give me anything. So it wasn't until I was about 3-4 post OP when I finally got some relief. And they had me up and moving already. And was still nothing by mouth(NPO). Not even ice. Yeah. So fun. My first attempt at liquids with a bunch of Zofran was a disaster so that redid the clock in terms of me eating. The popsicle didn't make it and neither did the 3 tablespoons of broth. By then I was 5 days with nothing to eat. So I was pissed. And once again facing the possibility of an NG shoved down my nose and throat. Oh did I mention my hemoglobin level dropped to 7. Yeah that's transfusion level low. So all this was happening at once. IT NEVER GETS EASIER. Ever. NO matter how many times I've gone through this and am mentally prepared for starving for 4-5 days easily and then the pain of your guts working and/or NOT working, it is never easy. It is just horrible every time. Being attached to an IV pole and having no choice but to drop to the hospital floor and barf in the garbage can is insane. Because hospital floors #1 are so clean. I hit the call button and basically jumped. They raced in because they answered the call and I didn't respond.  #2 Meeting your next RN for the next 12 hours while face first in the trash is swell.
Luckily I didn't need a transfusion although I wouldn't have minded getting topped off because it makes me feel so great!
Finally-- 4 days after surgery I could handle liquids. Well, a sip here and there. GI surgery is just so brutal. Your guts don't have to work for months, the surgery shuts them down even more and then trying to get them to work again and not get sick is such a slow road. I've done it way too many times. So on day 5 post OP I got FULL liquids which is still slop but better than unidentifiable broth.
It's all just so exhausting. Being hungry and thirsty makes you nuts. I can't even remember how many times now I've gone 4,5,6 days with nothing to eat or drink. An ice chip here or there. It breaks you. It continually amazes me what I have gone through. I know I'm different now. I try hard not to let it happen but when so many days you have the shit end of a situation you get bitter. No matter how hard you try sometimes, it creeps in. You see things differently and react differently. You resent what you can't do normally anymore. You hate yourself. You feel betrayed by your own body. I have always lived my life in the moment. Ok, today I'm flaring. Ok right now I need surgery etc... but it's always been with a given idea that the funk will pass and things will be good again. After THIS surgery. AFTER this gets better. After 5 years of thinking things will be good after yet another issue, I don't know if I have IT anymore. I don't know how to explain it other than I've defeated myself. Kinda. I'm not done yet but I'm 3 weeks post Op and it's not like everything is perfect. I'm happier without the ostomy but I can't lie. I have moments where I definitely weigh the pros of having one. There are cons even with the best case scenario it would seem. Bummer.

But I'm pushing on. Dealing with being wiped out after doing something normal for a few hours. I have to. Being normal is costly. 1-2 days afterwards are useless. I'm a slug. I just need to get through THIS recovery and everything will be ok... right???

Thanks for reading. XO

Thankful November

There seems to be a thing going around on social media where every day someone writes something they are thankful for this month. The idea is great. Truly it is. I don't have the dedication or attention span to do something every single day like that. I tried the October photo challenge on Instagram and failed miserably. Day 5. Oh, Day 17? Ok.
I will say this for this post. I am thankful for a lot. Despite the shitty hand I've been dealt and continue to get dealt I have some very wonderful things going on. There are so many days it is hard to see them through the fog of pain, the reality of illness and doctor's appointments and focusing on the negative. I'm sick of being tired and in pain. I'm sick of not going to beautiful places and traveling. I miss the salt air. I actually miss working out. I hate running one errand and being wiped out for an entire day. Then there comes a day that pulls the veil and makes everything feel so wonderful and in that moment, I forget I have anything to bitch about to begin with.
As much as I'm thankful that I had many years without so much as a sprained ankle, migraine etc... the last few years have definitely made up for it. So I'm thankful for a pain-free childhood and lived my 20s like I had to burn myself out on purpose.
I have my supportive husband who puts up with all this drama, and me being crabby and in pain, and not fun on many occasions. We don't go on vacation because I suck. Our outings are short lived. I'm pretty useless with heavy lifting situations and I'm usually in a drug induced coma at night if Daughter #2 wakes up. I have two healthy, beautiful, perfect girls. They are goofy and crack me up. I have a great family that I don't see nearly enough because we are scattered all over the country. I have childhood friends that I will always have a bond with and no matter how much time or distance, I know they will always be there.
Since moving to Texas I've met some really great people. I have friends I've met through my kids and through my Husband and I love those couple of gals. They know who they are. I enjoy the sunshine almost everyday, and Daughter #1 loves her school and all her friends. If this state wasn't run by a bunch of conservative, Republican douchebags and was on the ocean it would be perfect.
Specifically, today I am thankful for the internet and my IBD struggle. Yes. Thankful. Friday I got to meet up with a fellow gutsy girl that I met online through a support page. We slowly formed a friendship and we came to realize some similar interests outside of our guts.
Both of us being JFK nuts was one of our common threads. We met to see the movie "Parkland" and seriously it couldn't have been a better way to transition to "real life" friendship. It was like we'd been friends for years. We went to lunch and we probably could have sat there for 3 hours shooting the shit about whatever. And yes, we DID talk about our issues, but the best part is we didn't HAVE to. In fact we talked about that at the very end. After lunch, she left and I wandered around some shops killing time before a doctor's appointment and I realized, at one point, I felt really light. I just felt GOOD. I mean, I was still in pain and what not but I felt this weird sense of completeness I haven't felt in a while. Then it struck me that this was someone that understood me on more levels than anyone I'd met or known in a long time. There wasn't just the our-kids-go-to-school-connection, or the IBD connection, or the our-husbands-know-each-other-connection. It was really that sweet spot of both of us having this illness that brought us together and yet, if that illness disappeared we'd still be cool. It was almost as if you have this friend and then you both get diagnosed with the same thing so you just "get it". But you can still just be because you each understand so you don't need to explain it. I don't know. I hope that makes sense. Whatever I'm saying is, I'm thankful for my IBD and the internet for bringing me to this point where I have this friend I never would have known otherwise. She's not the first "friend" I have now because of my illness, but she's the first I got to meet up with. I had a pretty shitty couple of days around that pocket of a couple of hours, but somehow it wasn't so bad. I won't even get into those details right now. Thanks, Casey. Glad to now really know you in real life, so when I say "my friend" it doesn't just mean a name or face in my laptop. So I'm thankful. =) Have a great day everyone. Happy Birthday to the USMC today and a big thanks to all the Veterans tomorrow.

There seems to be a thing going around on social media where every day someone writes something they are thankful for this month. The idea is great. Truly it is. I don't have the dedication or attention span to do something every single day like that. I tried the October photo challenge on Instagram and failed miserably. Day 5. Oh, Day 17? Ok.
I will say this for this post. I am thankful for a lot. Despite the shitty hand I've been dealt and continue to get dealt I have some very wonderful things going on. There are so many days it is hard to see them through the fog of pain, the reality of illness and doctor's appointments and focusing on the negative. I'm sick of being tired and in pain. I'm sick of not going to beautiful places and traveling. I miss the salt air. I actually miss working out. I hate running one errand and being wiped out for an entire day. Then there comes a day that pulls the veil and makes everything feel so wonderful and in that moment, I forget I have anything to bitch about to begin with.
As much as I'm thankful that I had many years without so much as a sprained ankle, migraine etc... the last few years have definitely made up for it. So I'm thankful for a pain-free childhood and lived my 20s like I had to burn myself out on purpose.
I have my supportive husband who puts up with all this drama, and me being crabby and in pain, and not fun on many occasions. We don't go on vacation because I suck. Our outings are short lived. I'm pretty useless with heavy lifting situations and I'm usually in a drug induced coma at night if Daughter #2 wakes up. I have two healthy, beautiful, perfect girls. They are goofy and crack me up. I have a great family that I don't see nearly enough because we are scattered all over the country. I have childhood friends that I will always have a bond with and no matter how much time or distance, I know they will always be there.
Since moving to Texas I've met some really great people. I have friends I've met through my kids and through my Husband and I love those couple of gals. They know who they are. I enjoy the sunshine almost everyday, and Daughter #1 loves her school and all her friends. If this state wasn't run by a bunch of conservative, Republican douchebags and was on the ocean it would be perfect.
Specifically, today I am thankful for the internet and my IBD struggle. Yes. Thankful. Friday I got to meet up with a fellow gutsy girl that I met online through a support page. We slowly formed a friendship and we came to realize some similar interests outside of our guts.
Both of us being JFK nuts was one of our common threads. We met to see the movie "Parkland" and seriously it couldn't have been a better way to transition to "real life" friendship. It was like we'd been friends for years. We went to lunch and we probably could have sat there for 3 hours shooting the shit about whatever. And yes, we DID talk about our issues, but the best part is we didn't HAVE to. In fact we talked about that at the very end. After lunch, she left and I wandered around some shops killing time before a doctor's appointment and I realized, at one point, I felt really light. I just felt GOOD. I mean, I was still in pain and what not but I felt this weird sense of completeness I haven't felt in a while. Then it struck me that this was someone that understood me on more levels than anyone I'd met or known in a long time. There wasn't just the our-kids-go-to-school-connection, or the IBD connection, or the our-husbands-know-each-other-connection. It was really that sweet spot of both of us having this illness that brought us together and yet, if that illness disappeared we'd still be cool. It was almost as if you have this friend and then you both get diagnosed with the same thing so you just "get it". But you can still just be because you each understand so you don't need to explain it. I don't know. I hope that makes sense. Whatever I'm saying is, I'm thankful for my IBD and the internet for bringing me to this point where I have this friend I never would have known otherwise. She's not the first "friend" I have now because of my illness, but she's the first I got to meet up with. I had a pretty shitty couple of days around that pocket of a couple of hours, but somehow it wasn't so bad. I won't even get into those details right now. Thanks, Casey. Glad to now really know you in real life, so when I say "my friend" it doesn't just mean a name or face in my laptop. So I'm thankful. =) Have a great day everyone. Happy Birthday to the USMC today and a big thanks to all the Veterans tomorrow.

Broken. Just broken. For now.

I guess my goal lately is to go at least a month in between posts. Not intentionally but it keeps happening. Pretty much health wise things are chugging along. Got another scope by a different doc to tell me the same thing as last time. Severe ulceration still. Some nasty fissures causing pain. Muscle spasms are back to piss me off. Couple that with the abdominal pain from my engorged fallopian tube and I'm just in pain daily. Basically nonstop. Discomfort in so many areas. There are days I'm not leaving the house unless necessary. My pain pills dull it and I'm content to be under my electric blanket and zoning out. Some days it takes everything out of me to go to class. Running errands wipes me out for the day. It's just so pathetic and ridiculous. I had to take Daughter #1 to the doctor and it struck me how much time in the last four years has been eaten up by my medical issues. I've put in some solid time. Time I could be traveling. Reading. Hell, vacuuming would be better. Ok, maybe not, but it's just such bullshit. I was driving along thinking what do I have to show for four years? Let's not reduce the importance of having my child, naturally, but really. Not much. A lot of laying on my ass with zero drive or with too much pain to accomplish anything. I got pissed. Just that angry, upset pissed and the tears just come.
I'm 36. My time has slipped through my fingers. So much of it without any joy in it. Just days of pain. Hospitals. Doctors. Driving to doctors. Filling scripts. Getting tests. I've fucking had it. There's nothing I can do either but keep going and keep thinking that there will be a point where I'm just real and whole and healthy and not broken anymore.
As shitty as it's all been, that is still MY intention. I don't look at myself as this sickly, forever disabled person who will be trapped with this crap forever. My reality speaks to the contrary but maybe I'm an idiot. I do feel broken many, many days. It makes me sad. It's this weird feeling of losing life. Your 30s are FAR from old. This is prime time baby, and I don't have the body to make it happen. That pisses me off more than I can describe. You know when you get so drunk on Friday night and you sleep all day Saturday and all of a sudden it's Sunday and you are pissed that you basically missed your whole weekend? Well, that's my life. Saturday night I went out for a friend's birthday. I laid around all day to conserve energy so I would actually make it out(Yes, if I had so much as gone out to eat, run to the store etc... there would have been a good chance it just would have used my reserves and I would have bailed). We met for food(I didn't eat. Just not worth the risk) and then went to a bar with a DJ and a band for 80s night. We all had crimped hair and looked crazy and it was fun. We get there and the music was just so great. Those of you who know my drinking/partying/out all night/dance all night days know I loved it and it was my favorite thing to do. We would go dance for hours! Well, seriously two songs in and I'm lightheaded. I've got pain shooting through my abdomen. I'm just trying, trying to smother it and be ME and have fun. But I can only fake it so much. There were a couple points I thought I may hit the floor either from pain or exhaustion. In the middle of all those people smiling and dancing and drinking and LIVING, I was HATING myself. I just felt so broken. Like who the hell am I kidding? I almost left in that moment but I couldn't. I wanted to make it as long as I could because me being there was so rare. I don't go out and I don't even mean drinking or whatever. I don't really have many friends here or go to dinner or happy hour or yoga class or book club or whatever else normal, social people do.
Not too many years ago I had things to do every night. I was either out doing things with Dillan or out doing things with friends. I was rarely home. I have NEVER been a sit at home person. I was actually surprised I got invited because I had only met everyone once prior to being invited out. It felt nice. I didn't want to be lame and let my defective body win. So I milked my Captain and coke and danced as much as I could and had a lot of fun. I'm glad I went. I miss that part of me but indulging in the old me just casts resentment on the bullshit I deal with now.
Three years after filing for SSDI and being denied three times, I finally won at my hearing in August. So in two years my case will get reviewed to see if my heath has changed. It's a weird feeling. It felt good to win after fighting so long and them being so stupid in denying that IBD can affect a person's life so much. On the flip side, I don't think of myself as being so useless. Even though it's reality. I tried to work part time and I was in so much pain and it was so hard. To be this young and have the smallest things drain you is so difficult. <sigh>  But I guess it's nice to be justified in this way. I expect in two years at the review I'm going to be perfect, and healthy and as figured out and normal as possible and pick up my life where I left off a few years back. I have vacations to take and shit to do, people. Big time. I'm less than a month out from another surgery. I've got issues separate from that that I don't see resolving before then. So this should be interesting to say the least. Nothing I can do but meet it head on but it doesn't mean I have to like it. Thanks for listening to my boo-hooing. I've had over 10, 000 hits on my blog now. That amazes me, so thank you! XO

I guess my goal lately is to go at least a month in between posts. Not intentionally but it keeps happening. Pretty much health wise things are chugging along. Got another scope by a different doc to tell me the same thing as last time. Severe ulceration still. Some nasty fissures causing pain. Muscle spasms are back to piss me off. Couple that with the abdominal pain from my engorged fallopian tube and I'm just in pain daily. Basically nonstop. Discomfort in so many areas. There are days I'm not leaving the house unless necessary. My pain pills dull it and I'm content to be under my electric blanket and zoning out. Some days it takes everything out of me to go to class. Running errands wipes me out for the day. It's just so pathetic and ridiculous. I had to take Daughter #1 to the doctor and it struck me how much time in the last four years has been eaten up by my medical issues. I've put in some solid time. Time I could be traveling. Reading. Hell, vacuuming would be better. Ok, maybe not, but it's just such bullshit. I was driving along thinking what do I have to show for four years? Let's not reduce the importance of having my child, naturally, but really. Not much. A lot of laying on my ass with zero drive or with too much pain to accomplish anything. I got pissed. Just that angry, upset pissed and the tears just come.
I'm 36. My time has slipped through my fingers. So much of it without any joy in it. Just days of pain. Hospitals. Doctors. Driving to doctors. Filling scripts. Getting tests. I've fucking had it. There's nothing I can do either but keep going and keep thinking that there will be a point where I'm just real and whole and healthy and not broken anymore.
As shitty as it's all been, that is still MY intention. I don't look at myself as this sickly, forever disabled person who will be trapped with this crap forever. My reality speaks to the contrary but maybe I'm an idiot. I do feel broken many, many days. It makes me sad. It's this weird feeling of losing life. Your 30s are FAR from old. This is prime time baby, and I don't have the body to make it happen. That pisses me off more than I can describe. You know when you get so drunk on Friday night and you sleep all day Saturday and all of a sudden it's Sunday and you are pissed that you basically missed your whole weekend? Well, that's my life. Saturday night I went out for a friend's birthday. I laid around all day to conserve energy so I would actually make it out(Yes, if I had so much as gone out to eat, run to the store etc... there would have been a good chance it just would have used my reserves and I would have bailed). We met for food(I didn't eat. Just not worth the risk) and then went to a bar with a DJ and a band for 80s night. We all had crimped hair and looked crazy and it was fun. We get there and the music was just so great. Those of you who know my drinking/partying/out all night/dance all night days know I loved it and it was my favorite thing to do. We would go dance for hours! Well, seriously two songs in and I'm lightheaded. I've got pain shooting through my abdomen. I'm just trying, trying to smother it and be ME and have fun. But I can only fake it so much. There were a couple points I thought I may hit the floor either from pain or exhaustion. In the middle of all those people smiling and dancing and drinking and LIVING, I was HATING myself. I just felt so broken. Like who the hell am I kidding? I almost left in that moment but I couldn't. I wanted to make it as long as I could because me being there was so rare. I don't go out and I don't even mean drinking or whatever. I don't really have many friends here or go to dinner or happy hour or yoga class or book club or whatever else normal, social people do.
Not too many years ago I had things to do every night. I was either out doing things with Dillan or out doing things with friends. I was rarely home. I have NEVER been a sit at home person. I was actually surprised I got invited because I had only met everyone once prior to being invited out. It felt nice. I didn't want to be lame and let my defective body win. So I milked my Captain and coke and danced as much as I could and had a lot of fun. I'm glad I went. I miss that part of me but indulging in the old me just casts resentment on the bullshit I deal with now.
Three years after filing for SSDI and being denied three times, I finally won at my hearing in August. So in two years my case will get reviewed to see if my heath has changed. It's a weird feeling. It felt good to win after fighting so long and them being so stupid in denying that IBD can affect a person's life so much. On the flip side, I don't think of myself as being so useless. Even though it's reality. I tried to work part time and I was in so much pain and it was so hard. To be this young and have the smallest things drain you is so difficult. <sigh>  But I guess it's nice to be justified in this way. I expect in two years at the review I'm going to be perfect, and healthy and as figured out and normal as possible and pick up my life where I left off a few years back. I have vacations to take and shit to do, people. Big time. I'm less than a month out from another surgery. I've got issues separate from that that I don't see resolving before then. So this should be interesting to say the least. Nothing I can do but meet it head on but it doesn't mean I have to like it. Thanks for listening to my boo-hooing. I've had over 10, 000 hits on my blog now. That amazes me, so thank you! XO

#sickmomfail

Guilt. So much guilt comes with being chronically sick and in pain. This is the summer of #sickmomfail. Last summer I was recovering from surgery. This summer was supposed to be my "all in" summer. Nope. In pain. Stoned on pain meds. Laying on my bed playing word games on my phone. I can't imagine being sick like this prior to the digital age. I would have gone nuts. Daughter #1 loves to just GO... and I'm in park. As in parked on my sore ass. I feel like my chronic lameness makes her sad. I know she gets so disappointed. I hate it. I hate not being me. I feel trapped in a body that is defying me. I'm not eating much. I feel lethargic from meds. But let me back up a minute.
I left off needing to see my surgeon about my biopsy and scope results.  So I went last Wednesday and naturally there couldn't be good news. The basic rundown is as follows: I have Pouchitis in my JPouch. I have inflammation and ulceration of the 1cm that's left of my rectum, called the rectal cuff. So it's Cuffitis. My fistula that was opened is still healing and open and painful. And the cherry on top is that I have dysplasia somewhere up in there. By the time he got to that I was upset and didn't get the specifics of where. For those who don't know, dysplasia is abnormal cell growth. Often it is precancerous in nature so the area needs to be taken care of so it doesn't progress to cancer. For those that haven't been reading my blog, I had advanced cervical dysplasia over about 50% of my cervix in 2011 and had to have the area scraped away to prevent it from manifesting into cancer. So now I'm dealing with it somewhere else. Seriously..I have zero shame and modesty left. This must be how porn stars feel... nothing left to hide. So, now my surgeon wants to confer with some super specialist and double check the labs and maybe re-scope me and take new biopsies. HOW FUN!!! WoooooHoooooo! What a fan-fucking-tastic summer so far.
So, now I'm back on a steroid three times a day. This time Entocort. So far I don't notice much change other than the night sweats and being on edge 24/7. I'm used to being on Prednisone which kicks in fast so I know I'm being impatient. I'm also using a nightly suppository which is just a regular party in my ass. Yeah--- so painful, open wound ass and I need to put that through that. It SUCKS. Big time. It's hard too. Like plastic. So all you "I do anal stuff for sexy fun" people are OUT OF YOUR DAMN MINDS. Holy shit. Never.
I'm also still taking Norco for pain and Flagyl for the pouchitis. So, that's my day. Pill popping. Barely eating because it's just not worth it right now. It is truly a big struggle to pull myself together and be normal. I'm not succeeding. I feel useless. I am sad. I hate disappointing my kids. Lots of movies with Daughter #1. I feel so guilty not being 100%. I would love to run around. Can't swim because of the fistula healing. Can't ride bikes. Hurts to move a whole lot. Hurts to sit. The pain pills that normally knock me out at night are now fighting against the steroid induced night sweats. That's a lot of fun. :-/
My big outings have been a swim meet, fireworks on the 4th and the drive in movie. The last two I was parked in the back of Hub's truck trying to stay comfortable. Not an easy thing to do. So yeah. It's been tough. I need to find out where we go from here. I will have to be scoped again and they will need to surgically remove all the precancer cells and then monitor me. For now just trying to get rid of the pouchitis and treat the cuffitis that is causing me pain and issues. And I'm starving. I love food and this sucks. I had some rice yesterday and some marshmallows. I think that's it. But I had made a tomato cream sauce the night before and ate it and was in MISERY all that night into yesterday so that makes me pull back on eating. I knew acidic tomato would be bad, but I just wanted to EAT! It's really hard to cook and NOT eat what you made. It was yummy but it made me want to die for 6-12 hours later. NOT WORTH IT! But I'll do it again. It's hard just not eating what you like. Or cooking one thing and knowing you are eating something lame. It erases any motivation to make something. So at 4pm when I have no dinner plan, it sucks. I know all IBDers struggle with this. We just want something real and want what we want. If we feel ok we push the envelope and we suffer. I'm no exception. My diet is crap. Many fruits are bad. Most vegetables. I could live on potato chips and junk and be fine. One helping of something healthy and I'm in misery. I never thought I'd miss salad so much. And broccoli. It's ridiculous.
Enjoy your day everyone. Run and play with your kids. Or without your kids. Take advantage of being able to just 'Do'. When you can't it royally sucks.

Guilt. So much guilt comes with being chronically sick and in pain. This is the summer of #sickmomfail. Last summer I was recovering from surgery. This summer was supposed to be my "all in" summer. Nope. In pain. Stoned on pain meds. Laying on my bed playing word games on my phone. I can't imagine being sick like this prior to the digital age. I would have gone nuts. Daughter #1 loves to just GO... and I'm in park. As in parked on my sore ass. I feel like my chronic lameness makes her sad. I know she gets so disappointed. I hate it. I hate not being me. I feel trapped in a body that is defying me. I'm not eating much. I feel lethargic from meds. But let me back up a minute.
I left off needing to see my surgeon about my biopsy and scope results.  So I went last Wednesday and naturally there couldn't be good news. The basic rundown is as follows: I have Pouchitis in my JPouch. I have inflammation and ulceration of the 1cm that's left of my rectum, called the rectal cuff. So it's Cuffitis. My fistula that was opened is still healing and open and painful. And the cherry on top is that I have dysplasia somewhere up in there. By the time he got to that I was upset and didn't get the specifics of where. For those who don't know, dysplasia is abnormal cell growth. Often it is precancerous in nature so the area needs to be taken care of so it doesn't progress to cancer. For those that haven't been reading my blog, I had advanced cervical dysplasia over about 50% of my cervix in 2011 and had to have the area scraped away to prevent it from manifesting into cancer. So now I'm dealing with it somewhere else. Seriously..I have zero shame and modesty left. This must be how porn stars feel... nothing left to hide. So, now my surgeon wants to confer with some super specialist and double check the labs and maybe re-scope me and take new biopsies. HOW FUN!!! WoooooHoooooo! What a fan-fucking-tastic summer so far.
So, now I'm back on a steroid three times a day. This time Entocort. So far I don't notice much change other than the night sweats and being on edge 24/7. I'm used to being on Prednisone which kicks in fast so I know I'm being impatient. I'm also using a nightly suppository which is just a regular party in my ass. Yeah--- so painful, open wound ass and I need to put that through that. It SUCKS. Big time. It's hard too. Like plastic. So all you "I do anal stuff for sexy fun" people are OUT OF YOUR DAMN MINDS. Holy shit. Never.
I'm also still taking Norco for pain and Flagyl for the pouchitis. So, that's my day. Pill popping. Barely eating because it's just not worth it right now. It is truly a big struggle to pull myself together and be normal. I'm not succeeding. I feel useless. I am sad. I hate disappointing my kids. Lots of movies with Daughter #1. I feel so guilty not being 100%. I would love to run around. Can't swim because of the fistula healing. Can't ride bikes. Hurts to move a whole lot. Hurts to sit. The pain pills that normally knock me out at night are now fighting against the steroid induced night sweats. That's a lot of fun. :-/
My big outings have been a swim meet, fireworks on the 4th and the drive in movie. The last two I was parked in the back of Hub's truck trying to stay comfortable. Not an easy thing to do. So yeah. It's been tough. I need to find out where we go from here. I will have to be scoped again and they will need to surgically remove all the precancer cells and then monitor me. For now just trying to get rid of the pouchitis and treat the cuffitis that is causing me pain and issues. And I'm starving. I love food and this sucks. I had some rice yesterday and some marshmallows. I think that's it. But I had made a tomato cream sauce the night before and ate it and was in MISERY all that night into yesterday so that makes me pull back on eating. I knew acidic tomato would be bad, but I just wanted to EAT! It's really hard to cook and NOT eat what you made. It was yummy but it made me want to die for 6-12 hours later. NOT WORTH IT! But I'll do it again. It's hard just not eating what you like. Or cooking one thing and knowing you are eating something lame. It erases any motivation to make something. So at 4pm when I have no dinner plan, it sucks. I know all IBDers struggle with this. We just want something real and want what we want. If we feel ok we push the envelope and we suffer. I'm no exception. My diet is crap. Many fruits are bad. Most vegetables. I could live on potato chips and junk and be fine. One helping of something healthy and I'm in misery. I never thought I'd miss salad so much. And broccoli. It's ridiculous.
Enjoy your day everyone. Run and play with your kids. Or without your kids. Take advantage of being able to just 'Do'. When you can't it royally sucks.

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.

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....

happy colonlessiversary...or something.

One year. About the same exact time I sit here typing I was waking up from anesthesia. It seems nearly dreamlike, but I can say it was the most intense pain I have ever experienced. There are no words to explain it. Naturally they wake you up, you feel pain and then they get you going with the good meds. But in the time they moved me from a gurney to my bed, I thought I was dying. Hubs said I made animal sounds. Just primal, hurting sounds. I remember them telling me to roll and shift so they could move me. I remember just crying and saying I couldn't. I had just been cut open from above my belly button to my pelvic bone. My guts were separated from the surrounding organs and tissue. He pulled out my small intestines and looked them over for signs of Crohn's. He then put all of that back in and proceeded to remove all five feet of my large intestines and almost all of my rectum. Just enough was left to attach my J Pouch later. The loose end of my small bowel was formed into a reservoir shaped like a "J" and that was attached to what was left of my rectum. A portion of my small intestines much closer to the stomach was then disconnected from the rest and rerouted out through my abdomen at a stoma site so nothing would pass to the J Pouch while it healed. I was then stapled shut. All that shit hurts. The incision hurt. The stoma site hurt. The internal pain hurt. I felt like I got run over. Getting gutted is no joke. I just looked through my post op pics. I remember thinking my scar was so intense. In one year I almost forget it's there. But I don't hide it.

From being stapled shut after surgery---->

40 staples

Early scar, about 2 weeks post op after staples came out --->

FrankenBelly

Two days ago on World IBD Day.

I remember wondering if it was going to look like train tracks forever.
One year ago was the end of one long battle that changed me, crushed a lot of my spirit, messed with my self esteem, altered my body image, made me fear food, and made me doubt what I can do. It has been a very different type of battle this year, especially my time with an ostomy. There were nights I struggled and cried and said I couldn't do it. Hubs would say, "Well, it's too late. You have to. They can't put your colon back in now". My post surgical pain only ever came close to my UC flare pain the first few days post op. By the time I was home my flare pain put my recovery to shame.'
I still struggle. I will never be normal. Some days are worse than others. Some days are so great I forget I'm missing a major organ. Other days I swear I don't know how I can live this way. In terms of having colitis, no I technically don't have it anymore since Ulcerative colitis is only in the colon. But I struggle. My life is impacted everyday by this change in my anatomy. There are some foods I'll never eat again. There are other foods I just can't say no to and I pay for it for almost two days. I may have issues forever. They will never compare to a flare but regardless, they are there. My scar tissue pain has finally started subsiding. My fear that I have Crohn's and not UC is slowly fading as time goes on. I still have symptoms I am dealing with daily that keep me on alert. I can dehydrate very quickly and some days I get lightheaded fast because of it. I spent my first day out in the heat the other day and it didn't go so well. It hit me fast. Summers will be a continuous effort to stay hydrated and keep myself from blacking out. My absorption probably isn't the best and when my levels drop I feel it pretty quickly. I don't want to say I may have limitations forever. I hope not. I hate that thought and I hate when my body holds me back and betrays me. I don't want to be afraid to go for a bike ride. Or wonder if my spasms will shackle me for the day, or keep me up all night. I can only take it and it comes and play the hand I'm dealt. Being back at work part time has already been impacted by it. I hate that. I don't like feeling like maybe I can't hold up my end because my stupid body has other plans. It's hard. It hurts. It frustrates me and creates a lot of self doubt. Hoping that will lessen as time goes by.
 Anyway- Happy one year to me being colonless and getting to tell my story. Thanks everyone for being supportive and reading and sharing. Love to all.
XO from one gutsy broad. =-)

One year. About the same exact time I sit here typing I was waking up from anesthesia. It seems nearly dreamlike, but I can say it was the most intense pain I have ever experienced. There are no words to explain it. Naturally they wake you up, you feel pain and then they get you going with the good meds. But in the time they moved me from a gurney to my bed, I thought I was dying. Hubs said I made animal sounds. Just primal, hurting sounds. I remember them telling me to roll and shift so they could move me. I remember just crying and saying I couldn't. I had just been cut open from above my belly button to my pelvic bone. My guts were separated from the surrounding organs and tissue. He pulled out my small intestines and looked them over for signs of Crohn's. He then put all of that back in and proceeded to remove all five feet of my large intestines and almost all of my rectum. Just enough was left to attach my J Pouch later. The loose end of my small bowel was formed into a reservoir shaped like a "J" and that was attached to what was left of my rectum. A portion of my small intestines much closer to the stomach was then disconnected from the rest and rerouted out through my abdomen at a stoma site so nothing would pass to the J Pouch while it healed. I was then stapled shut. All that shit hurts. The incision hurt. The stoma site hurt. The internal pain hurt. I felt like I got run over. Getting gutted is no joke. I just looked through my post op pics. I remember thinking my scar was so intense. In one year I almost forget it's there. But I don't hide it.

From being stapled shut after surgery---->

40 staples

Early scar, about 2 weeks post op after staples came out --->

FrankenBelly

Two days ago on World IBD Day.

I remember wondering if it was going to look like train tracks forever.
One year ago was the end of one long battle that changed me, crushed a lot of my spirit, messed with my self esteem, altered my body image, made me fear food, and made me doubt what I can do. It has been a very different type of battle this year, especially my time with an ostomy. There were nights I struggled and cried and said I couldn't do it. Hubs would say, "Well, it's too late. You have to. They can't put your colon back in now". My post surgical pain only ever came close to my UC flare pain the first few days post op. By the time I was home my flare pain put my recovery to shame.'
I still struggle. I will never be normal. Some days are worse than others. Some days are so great I forget I'm missing a major organ. Other days I swear I don't know how I can live this way. In terms of having colitis, no I technically don't have it anymore since Ulcerative colitis is only in the colon. But I struggle. My life is impacted everyday by this change in my anatomy. There are some foods I'll never eat again. There are other foods I just can't say no to and I pay for it for almost two days. I may have issues forever. They will never compare to a flare but regardless, they are there. My scar tissue pain has finally started subsiding. My fear that I have Crohn's and not UC is slowly fading as time goes on. I still have symptoms I am dealing with daily that keep me on alert. I can dehydrate very quickly and some days I get lightheaded fast because of it. I spent my first day out in the heat the other day and it didn't go so well. It hit me fast. Summers will be a continuous effort to stay hydrated and keep myself from blacking out. My absorption probably isn't the best and when my levels drop I feel it pretty quickly. I don't want to say I may have limitations forever. I hope not. I hate that thought and I hate when my body holds me back and betrays me. I don't want to be afraid to go for a bike ride. Or wonder if my spasms will shackle me for the day, or keep me up all night. I can only take it and it comes and play the hand I'm dealt. Being back at work part time has already been impacted by it. I hate that. I don't like feeling like maybe I can't hold up my end because my stupid body has other plans. It's hard. It hurts. It frustrates me and creates a lot of self doubt. Hoping that will lessen as time goes by.
 Anyway- Happy one year to me being colonless and getting to tell my story. Thanks everyone for being supportive and reading and sharing. Love to all.
XO from one gutsy broad. =-)

WEGO challenge Day #11 -- social media, what, who, when, wow!

Today's prompt. 

Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I love the internet. I can not imagine what life would have been like in High School or college(the first time) with the 24/7 connection to the world. 

Those who know me, know I love them all. Facebook can be oh so annoying, but the positives of what I have gotten from it, make me hang in there. I have reconnected with people who I lost touch with. I get to see where their lives have gone, see their beautiful kids, faces that bring back great memories, and it's effortless to connect and share pics and info with many people at once. Plus, I have a built in IBD network of so many wonderful people that I have never met, and may never meet, who get it and understand and have been in my shoes and me in their's. My facebook IBD groups made me feel less scared and isolated and singular. It allowed me to own my struggle with IBD. It's brilliant!

I also love Twitter. I love getting all my news headlines, traffic issues, funny tidbits, my IBD community exchanges blurbs about their shitty days or their successes. I love the simplicity of the retweet. I love seeing the randomness that celebrities come up with on their accounts. 

On my old macbook. I'm sure my smartphone was with me too.

I'm much newer to Pinterest but I do enjoy it. It is unreal the ideas and recipes and home decor and outfits and picture scenarios can be in one place. It really seems endless and could take up an entire day. I like that everything is on it's own little boards and it becomes it's own little way of passing ideas and stories. 

I use all three to share my blog and share my journey and pass along details and stories of people that I admire or connect with and feel others should read about. 

I love it. I love that you can find out virtually anything in a matter of seconds. I love video chatting and think there should be more of that. I remember dial up with a phone cord stretched into the spare room of my parents house. I remember when AOL disks came in the mail every other day. Amazing how much has changed. I still write thank you cards though. You know, the ones you put a stamp on and mail?! =)

Today's prompt. 

Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I love the internet. I can not imagine what life would have been like in High School or college(the first time) with the 24/7 connection to the world. 

Those who know me, know I love them all. Facebook can be oh so annoying, but the positives of what I have gotten from it, make me hang in there. I have reconnected with people who I lost touch with. I get to see where their lives have gone, see their beautiful kids, faces that bring back great memories, and it's effortless to connect and share pics and info with many people at once. Plus, I have a built in IBD network of so many wonderful people that I have never met, and may never meet, who get it and understand and have been in my shoes and me in their's. My facebook IBD groups made me feel less scared and isolated and singular. It allowed me to own my struggle with IBD. It's brilliant!

I also love Twitter. I love getting all my news headlines, traffic issues, funny tidbits, my IBD community exchanges blurbs about their shitty days or their successes. I love the simplicity of the retweet. I love seeing the randomness that celebrities come up with on their accounts. 

On my old macbook. I'm sure my smartphone was with me too.

I'm much newer to Pinterest but I do enjoy it. It is unreal the ideas and recipes and home decor and outfits and picture scenarios can be in one place. It really seems endless and could take up an entire day. I like that everything is on it's own little boards and it becomes it's own little way of passing ideas and stories. 

I use all three to share my blog and share my journey and pass along details and stories of people that I admire or connect with and feel others should read about. 

I love it. I love that you can find out virtually anything in a matter of seconds. I love video chatting and think there should be more of that. I remember dial up with a phone cord stretched into the spare room of my parents house. I remember when AOL disks came in the mail every other day. Amazing how much has changed. I still write thank you cards though. You know, the ones you put a stamp on and mail?! =)

WEGO Writing challenge Day #10. --- Picture Perfect.

Here's the prompt---->

HAWMC Day 10: Wordless Wednesday!

It’s often hard to like pictures of ourselves – post your favorite picture of yourself.  

I rarely like a picture of myself, especially since getting sick. My hair is different, my face looks different, my body composition is different, all the weight fluctuations have created a skewed body image in my head. It sucks. Every once in a while I'll see a picture taken that reminds me of the 'old' me and where I think, "Ok, I look pretty good!". I don't know. My hair had grown in a bit and I had a good cut, most of my fat prednisone face was gone, my eyelashes look nice and it was date night! It's few and far between. Anyway, here's one from a while ago I really like..... 

HAHAHAHAHAH-- JUST KIDDING!!!! I do love leopard print shoes though. Ok, here it is for real! ;-)

Here's the prompt---->

HAWMC Day 10: Wordless Wednesday!

It’s often hard to like pictures of ourselves – post your favorite picture of yourself.  

I rarely like a picture of myself, especially since getting sick. My hair is different, my face looks different, my body composition is different, all the weight fluctuations have created a skewed body image in my head. It sucks. Every once in a while I'll see a picture taken that reminds me of the 'old' me and where I think, "Ok, I look pretty good!". I don't know. My hair had grown in a bit and I had a good cut, most of my fat prednisone face was gone, my eyelashes look nice and it was date night! It's few and far between. Anyway, here's one from a while ago I really like..... 

HAHAHAHAHAH-- JUST KIDDING!!!! I do love leopard print shoes though. Ok, here it is for real! ;-)

WEGO Health writers challenge Day #9-- parenting while sick.

Here is today's prompt. I know, I'm totally late--->

HAWMC Day 9:

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

The hardest thing about being sick wasn't the pain. It wasn't losing a job I loved. It wasn't the meds that made me ugly and crazy. It wasn't the hospitalizations. It was how many times I had to tell my daughter, "No". Her PreK, Kinder and 1st grade was consumed with a mom who was always in bed, in pain, in the bathroom, half asleep, on pain meds, in the hospital, at the doctor.... the list goes on. I stopped making promises because I couldn't keep them. I knew if I said we would go to the park tomorrow, chances were that I would in no way be able to handle that. Seeing disappointment on her face so many times killed me. She hated when I was in the hospital. I don't know how much it freaked her out. I know she hated seeing all my IVs and the PICC line and she saw at least one blood transfusion. It was very, very difficult to explain. After my surgery she became more curious as I got better. She would ask to see my stoma. It didn't gross her out. She asked if she would have to get her large intestines taken out. Again, I didn't want to give a false promise so I just said that I hoped not. She told her teacher last year that her Mommy got her large intestines taken out. Her teacher didn't believe her. I'm not sure where she thought a 7 year old would come up with that on her own!! Things are better now. I felt guilty for not being fully present for so long. I felt guilty of the days I was missing. I hated UC for making me unable to be involved with my child. 

Family visits in the big H.

What I hope I did and continue to do right, is just be honest. I never lied about how I felt or what I was going through. She knew my pain. She knew my wounds. Saw my hair fall out. Saw me stapled shut. I always try to be as honest as it is appropriate for her age. I think it makes her understand and not be resentful. If I had hid it, she wouldn't have really 'gotten' it and then possibly would have just resented that I never wanted to play with her.
I hope anyway. I know having surgery gave me my life back. If I lay in bed now, it's a choice, not a necessity. Things have improved. My daughter hasn't forgotten. She's happy I'm better and can be more involved and I think I've disolved any leftover fears she might have had. I hope. 

Here is today's prompt. I know, I'm totally late--->

HAWMC Day 9:

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

The hardest thing about being sick wasn't the pain. It wasn't losing a job I loved. It wasn't the meds that made me ugly and crazy. It wasn't the hospitalizations. It was how many times I had to tell my daughter, "No". Her PreK, Kinder and 1st grade was consumed with a mom who was always in bed, in pain, in the bathroom, half asleep, on pain meds, in the hospital, at the doctor.... the list goes on. I stopped making promises because I couldn't keep them. I knew if I said we would go to the park tomorrow, chances were that I would in no way be able to handle that. Seeing disappointment on her face so many times killed me. She hated when I was in the hospital. I don't know how much it freaked her out. I know she hated seeing all my IVs and the PICC line and she saw at least one blood transfusion. It was very, very difficult to explain. After my surgery she became more curious as I got better. She would ask to see my stoma. It didn't gross her out. She asked if she would have to get her large intestines taken out. Again, I didn't want to give a false promise so I just said that I hoped not. She told her teacher last year that her Mommy got her large intestines taken out. Her teacher didn't believe her. I'm not sure where she thought a 7 year old would come up with that on her own!! Things are better now. I felt guilty for not being fully present for so long. I felt guilty of the days I was missing. I hated UC for making me unable to be involved with my child. 

Family visits in the big H.

What I hope I did and continue to do right, is just be honest. I never lied about how I felt or what I was going through. She knew my pain. She knew my wounds. Saw my hair fall out. Saw me stapled shut. I always try to be as honest as it is appropriate for her age. I think it makes her understand and not be resentful. If I had hid it, she wouldn't have really 'gotten' it and then possibly would have just resented that I never wanted to play with her.
I hope anyway. I know having surgery gave me my life back. If I lay in bed now, it's a choice, not a necessity. Things have improved. My daughter hasn't forgotten. She's happy I'm better and can be more involved and I think I've disolved any leftover fears she might have had. I hope. 

WEGO Health writer's challenge Day #8--- Tigress

Here is WEGO's prompt for Day #8--->
If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe?  

This one is a tough one. The days that are symptom free are few and far between. Almost nonexistent. 
For the most part, having UC has sucked big time. I'm going to have to say my UC was/is a Tiger. 

Meow- good kitty.

Sometimes Tigers just lay around all lazy soaking up some sun, doing a whole lot of nothing. And then out of no where it can attack quickly reaching up to 40mph to catch it's prey which it proceeds to strangle by locking it's jaws around it until it dies. I definitely felt UC strangling the life out of me. Out of nowhere. One minute I was just chilling, having some water and -BAM- Tiger ambush is complete. Then it proceeded to tear me apart. Being sick was always two extremes for me. The half asleep lazy sunbather and the wild attacking killer. No in between. Even now with my JPouch I have days it feels like I was never sick and then the next day I can feel horrible and there aren't enough muscle relaxers in the world that can help me. 

Here is WEGO's prompt for Day #8--->
If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe?  

This one is a tough one. The days that are symptom free are few and far between. Almost nonexistent. 
For the most part, having UC has sucked big time. I'm going to have to say my UC was/is a Tiger. 

Meow- good kitty.

Sometimes Tigers just lay around all lazy soaking up some sun, doing a whole lot of nothing. And then out of no where it can attack quickly reaching up to 40mph to catch it's prey which it proceeds to strangle by locking it's jaws around it until it dies. I definitely felt UC strangling the life out of me. Out of nowhere. One minute I was just chilling, having some water and -BAM- Tiger ambush is complete. Then it proceeded to tear me apart. Being sick was always two extremes for me. The half asleep lazy sunbather and the wild attacking killer. No in between. Even now with my JPouch I have days it feels like I was never sick and then the next day I can feel horrible and there aren't enough muscle relaxers in the world that can help me. 

Day #7 WEGO writer's challenge-- People have no filter.

So I was a bit negligent this weekend and missed a few days and here I am picking up on day #7.
Here are the challenge details---

HAWMC Day 7 – Sensationalize!

Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

Do I really have to pick ONE ridiculous thing??? There's no way so I will just go ahead and throw a few out there. Note, my comments following would be written in a sarcasm font if available. 

* "Try eating more vegetables. If you eat healthier you'll have less digestive issues." Oh yes Obiwan. I should eat more fiber and ruffage and increase the activity in my ulcerated, bleeding and inflamed colon. Spot on!!! Why didn't my two GIs think of that? Hell, it could have been that easy!? It makes COMPLETE sense that my diseased guts would heal by sending rougher material through it. I feel like such a fool. :-/

* "Oh my god, THAT sucks. I would HATE to be that sick." Oh no, I freaking love it. Nothing like a week in the hospital for a good time. 

* "Try changing your diet." Yep. To what? Let me know what foods magically cure my immune system attacking my colon. 

* "You don't look sick."  This one is a classic among the IBD community. What does sick look like? Have you actually seen my colonoscopy pics? No? Well here, I'll show you what sick looks like from the inside. 

* "It's autoimmune? So you mean, like AIDS?"  That is a syndrome that develops from HIV. Nothing else is affiliated with your immune system besides AIDS. You guessed it. 

* "I wish I could not work and lay in bed all day." Oh do you? You wish you could have excruciating intestinal cramping where you can't stand up? You wish you had the arthritis that comes and goes where my knees feel like someone is stabbing them with a knife and my fingers hurt so bad I can't make a fist? Oh, you wish you were so anemic and malnourished that you can't stand up without blacking out and can't raise your arms over your head to wash your own hair? Really? You do? Hmmmm..that's an odd thing to wish for.

Those are just a few. People are ignorant and thoughtless. Do people really think that if something would work, we wouldn't TRY IT!!! If yoga could cure me, don't you think I'd be at a yoga studio 2 times a day, 7 days a week?? So frustrating. Even more reason to talk and tell my story and attempt to make people more familiar with IBD. 

I went out to a golf facility called Top Golf today. I used to golf a lot before I got sick. Afterward it was too painful to continuously twist and swing a club. It felt so great to do it and I felt so normal!!! Longest drive was only 103 but I'll take it!

Here's me! =)

Hope everyone had a great weekend!! Xo

So I was a bit negligent this weekend and missed a few days and here I am picking up on day #7.
Here are the challenge details---

HAWMC Day 7 – Sensationalize!

Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

Do I really have to pick ONE ridiculous thing??? There's no way so I will just go ahead and throw a few out there. Note, my comments following would be written in a sarcasm font if available. 

* "Try eating more vegetables. If you eat healthier you'll have less digestive issues." Oh yes Obiwan. I should eat more fiber and ruffage and increase the activity in my ulcerated, bleeding and inflamed colon. Spot on!!! Why didn't my two GIs think of that? Hell, it could have been that easy!? It makes COMPLETE sense that my diseased guts would heal by sending rougher material through it. I feel like such a fool. :-/

* "Oh my god, THAT sucks. I would HATE to be that sick." Oh no, I freaking love it. Nothing like a week in the hospital for a good time. 

* "Try changing your diet." Yep. To what? Let me know what foods magically cure my immune system attacking my colon. 

* "You don't look sick."  This one is a classic among the IBD community. What does sick look like? Have you actually seen my colonoscopy pics? No? Well here, I'll show you what sick looks like from the inside. 

* "It's autoimmune? So you mean, like AIDS?"  That is a syndrome that develops from HIV. Nothing else is affiliated with your immune system besides AIDS. You guessed it. 

* "I wish I could not work and lay in bed all day." Oh do you? You wish you could have excruciating intestinal cramping where you can't stand up? You wish you had the arthritis that comes and goes where my knees feel like someone is stabbing them with a knife and my fingers hurt so bad I can't make a fist? Oh, you wish you were so anemic and malnourished that you can't stand up without blacking out and can't raise your arms over your head to wash your own hair? Really? You do? Hmmmm..that's an odd thing to wish for.

Those are just a few. People are ignorant and thoughtless. Do people really think that if something would work, we wouldn't TRY IT!!! If yoga could cure me, don't you think I'd be at a yoga studio 2 times a day, 7 days a week?? So frustrating. Even more reason to talk and tell my story and attempt to make people more familiar with IBD. 

I went out to a golf facility called Top Golf today. I used to golf a lot before I got sick. Afterward it was too painful to continuously twist and swing a club. It felt so great to do it and I felt so normal!!! Longest drive was only 103 but I'll take it!

Here's me! =)

Hope everyone had a great weekend!! Xo

Health Activist Writer's challenge #1- Writing about UC

Hello out there everyone. This is my first attempt at participating in the #HAWMC! I am going to give it my best shot despite being busy with school and kids yadda yadda yadda....
I am not a newbie to WEGO health. My blog was so awesomely nominated as Rookie of the Year for 2012. WEGO is a great community of people who write about health issues.
I know with me I had wanted to start my blog when I first got sick but just didn't have it in me. I was lucky to be barely functioning as a mom while constantly being in a UC flare. Somehow I was dragging my diseased ass to work 40 hours and trying my damnedest to lead a normal life. Hello! Crazy person!! I shouldn't have been driving half the days I did. I was so weak and light headed. Anemic constantly. Malnourished constantly. I should have had a chauffer. So needless to say I was not  up to adding one more thing on my plate by blogging. Once I was scheduled for surgery last year I realized even more how I wish I had chronicled my journey. I had already forgotten details. I mixed up what happened in which hospitalization(like it really matters!) and I wish I had more pictures of what the disease had done to me physically. Hubs refers to me at my worst as Skeletor. Those of you old enough to remember He-Man know what I'm talking about. I have some random pics here and there but I kick myself for not documenting my journey on a bigger scale.
So in early 2012, with my surgery scheduled for May, I figured I would start so that way I could at least tell my story of surgery and recovery. I know a lot of people are so afraid of surgery they'd rather suffer for years and have their body destroyed by meds, so I wanted to make it real. I knew there would be dreadful days, but I also knew there would be many victories. I had the mindset that I would kick some ass in recovery and wanted to put a happy ending of sorts out into the IBD community. I wanted to write about how my health and surgery and recovery impacted my life, good and bad. So that's where I am today. I am closing in on having my blog one year and in that time have had almost 7,500 visitors to my little page. That is amazing to me since for the most part my blog was a little bit of therapy so to be that well received is a bonus.

Worst IV location EVER!!

I'm glad I did it. My story isn't the prettiest, my pictures are kinda gross and shocking, but I don't plan on stopping. I know my story is helping someone out there and I love it.
Until tomorrow, everyone!! Have a great night. XO

Hello out there everyone. This is my first attempt at participating in the #HAWMC! I am going to give it my best shot despite being busy with school and kids yadda yadda yadda....
I am not a newbie to WEGO health. My blog was so awesomely nominated as Rookie of the Year for 2012. WEGO is a great community of people who write about health issues.
I know with me I had wanted to start my blog when I first got sick but just didn't have it in me. I was lucky to be barely functioning as a mom while constantly being in a UC flare. Somehow I was dragging my diseased ass to work 40 hours and trying my damnedest to lead a normal life. Hello! Crazy person!! I shouldn't have been driving half the days I did. I was so weak and light headed. Anemic constantly. Malnourished constantly. I should have had a chauffer. So needless to say I was not  up to adding one more thing on my plate by blogging. Once I was scheduled for surgery last year I realized even more how I wish I had chronicled my journey. I had already forgotten details. I mixed up what happened in which hospitalization(like it really matters!) and I wish I had more pictures of what the disease had done to me physically. Hubs refers to me at my worst as Skeletor. Those of you old enough to remember He-Man know what I'm talking about. I have some random pics here and there but I kick myself for not documenting my journey on a bigger scale.
So in early 2012, with my surgery scheduled for May, I figured I would start so that way I could at least tell my story of surgery and recovery. I know a lot of people are so afraid of surgery they'd rather suffer for years and have their body destroyed by meds, so I wanted to make it real. I knew there would be dreadful days, but I also knew there would be many victories. I had the mindset that I would kick some ass in recovery and wanted to put a happy ending of sorts out into the IBD community. I wanted to write about how my health and surgery and recovery impacted my life, good and bad. So that's where I am today. I am closing in on having my blog one year and in that time have had almost 7,500 visitors to my little page. That is amazing to me since for the most part my blog was a little bit of therapy so to be that well received is a bonus.

Worst IV location EVER!!

I'm glad I did it. My story isn't the prettiest, my pictures are kinda gross and shocking, but I don't plan on stopping. I know my story is helping someone out there and I love it.
Until tomorrow, everyone!! Have a great night. 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

curves, swerves, and milestones.

Hey everyone... I have been a bad blog mommy. It has been way too long and it's because I'm back in school and the last few weeks most of my free time has been studying for my A&P exam, practical and writing a lab report. This weekend I need to do some reviewing but I can't make myself pick my book up yet.
Hubs was organizing and getting some of the taxes done earlier today and I had to give him all the miles I had driven for medical reasons. As I was going through the list, todays date from last year popped up and it was the day I had my last Remicade infusion!! It wasn't supposed to be my last but after the debacle the new hospital put me through and how long it took I never rescheduled the one more I should have gotten before I had my colectomy. I survived, even though I took a chance that my flare would get worse and cause issues going into surgery. I just couldn't bring myself to go back another time and pump myself full of chemicals that weren't even doing their job. Not to mention the pneumonia I was fighting (not fighting) to no avail because I had zero immune system from the Remi. Choosing to skip that last infusion was a toss up for me because it meant chancing my flare getting worse, but on the flip side, prolonging my pneumonia and possible postponing my surgery because I couldn't get better. So I decided to give my immune system a go when by March, I still had pneumonia from the end of January and had been on roughly four rounds of antibiotic and two steroid shots. I could not get rid of it and as April approached I was getting really nervous that my colectomy would have to be rescheduled because I couldn't fight stupid pneumonia.
It all worked out in the end after a few more rounds of antibiotic, another steroid shot, a set of chest x rays and two CT scans. I'm pretty sure the outcome would have been different had I bombarded my body with more Remi at the end of April.
Needless to say, I haven't been sick since. Stuffed up a few days here and there but not sick! Finally... after constantly being rundown, feverish, achy, and coughing for a year at a time, I've got nothing even close. AMAZING!! So, I felt the need to write a little something commemorating this first milestone of a few more that will come this year.
School has been crazy, trying to handle it the best I can with everything else that goes on day to day. Every day there's something with kids...there are days I have to choose what to make a priority and obviously it's my kids. I'm not too happy with my first test score but I made the class average so I guess it could be worse. A lot worse.
My 18 month old is basically out of control. Everyday I think she's going to bounce her way out of her crib a la Tigger. It's nuts. No sitting still. Unless she's asleep. And she really doesn't like me studying. She prefers to take my pens and pencils and attempt to make graffiti on my $180 lab book. AWESOME.
Oh and I'm blonde again. So many exciting things. My head's swimming with all the activity around here. =)
I'm really excited that the girls and I are heading to Florida for a few days over spring break.  Daytona bound! Whenever I go back it's like I go home a bit. I loved living down there. I had the best time. I miss the beach. I miss the salt air. I can't wait. It'll be nice. My sister will be going down too and I'll get to meet my little niece. Can't wait. I have roughly two weeks to get my body bikini ready... totally possible, right??!! Right..... ;-) Ok good. I'll start on that tomorrow. Or maybe Monday. We'll see. I don't know. Maybe some self tanner will hide everything. Kinda like photoshop. Sounds perfect.
My oldest turns 8 a week from today. I can't even believe it. Too much to process. An 8 year old. Holy crap. How am I old enough to have an 8 year old??? No birthday plans yet because school has been consuming my life, but as the song says... "Life throws you curves. You learn to swerve". Thanks, Rascal Flatts. That sums up the last few years perfectly.
Have a great weekend everyone. Thanks for reading. XO

Hey everyone... I have been a bad blog mommy. It has been way too long and it's because I'm back in school and the last few weeks most of my free time has been studying for my A&P exam, practical and writing a lab report. This weekend I need to do some reviewing but I can't make myself pick my book up yet.
Hubs was organizing and getting some of the taxes done earlier today and I had to give him all the miles I had driven for medical reasons. As I was going through the list, todays date from last year popped up and it was the day I had my last Remicade infusion!! It wasn't supposed to be my last but after the debacle the new hospital put me through and how long it took I never rescheduled the one more I should have gotten before I had my colectomy. I survived, even though I took a chance that my flare would get worse and cause issues going into surgery. I just couldn't bring myself to go back another time and pump myself full of chemicals that weren't even doing their job. Not to mention the pneumonia I was fighting (not fighting) to no avail because I had zero immune system from the Remi. Choosing to skip that last infusion was a toss up for me because it meant chancing my flare getting worse, but on the flip side, prolonging my pneumonia and possible postponing my surgery because I couldn't get better. So I decided to give my immune system a go when by March, I still had pneumonia from the end of January and had been on roughly four rounds of antibiotic and two steroid shots. I could not get rid of it and as April approached I was getting really nervous that my colectomy would have to be rescheduled because I couldn't fight stupid pneumonia.
It all worked out in the end after a few more rounds of antibiotic, another steroid shot, a set of chest x rays and two CT scans. I'm pretty sure the outcome would have been different had I bombarded my body with more Remi at the end of April.
Needless to say, I haven't been sick since. Stuffed up a few days here and there but not sick! Finally... after constantly being rundown, feverish, achy, and coughing for a year at a time, I've got nothing even close. AMAZING!! So, I felt the need to write a little something commemorating this first milestone of a few more that will come this year.
School has been crazy, trying to handle it the best I can with everything else that goes on day to day. Every day there's something with kids...there are days I have to choose what to make a priority and obviously it's my kids. I'm not too happy with my first test score but I made the class average so I guess it could be worse. A lot worse.
My 18 month old is basically out of control. Everyday I think she's going to bounce her way out of her crib a la Tigger. It's nuts. No sitting still. Unless she's asleep. And she really doesn't like me studying. She prefers to take my pens and pencils and attempt to make graffiti on my $180 lab book. AWESOME.
Oh and I'm blonde again. So many exciting things. My head's swimming with all the activity around here. =)
I'm really excited that the girls and I are heading to Florida for a few days over spring break.  Daytona bound! Whenever I go back it's like I go home a bit. I loved living down there. I had the best time. I miss the beach. I miss the salt air. I can't wait. It'll be nice. My sister will be going down too and I'll get to meet my little niece. Can't wait. I have roughly two weeks to get my body bikini ready... totally possible, right??!! Right..... ;-) Ok good. I'll start on that tomorrow. Or maybe Monday. We'll see. I don't know. Maybe some self tanner will hide everything. Kinda like photoshop. Sounds perfect.
My oldest turns 8 a week from today. I can't even believe it. Too much to process. An 8 year old. Holy crap. How am I old enough to have an 8 year old??? No birthday plans yet because school has been consuming my life, but as the song says... "Life throws you curves. You learn to swerve". Thanks, Rascal Flatts. That sums up the last few years perfectly.
Have a great weekend everyone. 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

What's left behind..

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

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