Lucky #7 and the mental beatings of IBD.

Yeah yeah it's been a while. Things have been crap and I wasn't going to keep regurgitating the same whiny stuff over and over. In my last post I referenced my surgeon going in to clean out adhesions and check things out. Well, the time has come. I've done pain management. I've tried every med to change my system and alter how my guts process. Muscle relaxers. Opiates. Injections. Cholesterol meds to reduce stomach acid. You name it. It hurts when I starve. It hurts when I eat. It hurts when I Stretch in the morning. You know that glorious morning stretch!? Nope for me it's like hot pokers. And that's just my internal abdominal pain.

 I'm not even getting into digestive issues, skin issues, chronic fatigue, dehydration, being lightheaded. I haven't even blogged about my surgical procedure a few months back to heal up fissures in places that shall not be named and the horrifying, humiliating side effects that brought on. And who knew Botox went in your butt!? It can.  

I won't bore you with what has become my mundane health issues that for the average person aren't mundane. Pain that I suffer through at home that would drive most to the ER. Health issues that a few years ago I so naively thought would be taken care of and I could move on. Now I have given in to the fact that this is a life style. I have finally resigned that IBD isn't what I'm getting over. 

My exhaustion and inability to avoid recovery time from a day out. I've been told to do yoga, do Pilates, work on the scar tissue, try to regain my muscle mass. How the hell can I do that when a trip to Target and lunch wipes me out for a day and a half? Seriously. A big ole WTF with that.  

So it has come to me getting opened back up. Again. He'll be starting higher up, above my belly button so he can get in at a clean area without scar tissue and work down through it. He'll clean me out, load my guts up with some Seprafilm which adheres to tissue and prevents adhesions from forming and attaching. That's key because the catch 22 with an adhesion surgery is, every time you have surgery, you are bound to develop adhesions. My surgeon never goes in to do this JUST for this reason but he's making an exception for me. I'm that special. And we are hoping for the best. Risks of another Ostomy, injury to surrounding organs, resections etc...have not discouraged me in any way. Something has to give and open abdominal surgery does not scare me or intimidate me anymore. I'll have a bigger scar and more badassery.  So my date is October 16th. One month to mentally prepare for recovery and enhanced FrankenBelly. He's going to poke around and shoot up my Lavator muscle with some Botox too while he's in there to hopefully knock out the excruciating spasms I have that stop me in my tracks on a daily basis. 

It has been a rough patch for me since the spring. I finished the Paralegal degree program despite all this crap going on, but the nagging in the back of my head regarding my self worth, and the continuous battle to maintain a smidgen of self esteem is exhausting. Looking in the mirror and questioning yourself and your worth because you are so beat down and defeated day in and day out is indescribable. I'm my own worst critic. My own worst enemy. I think that has become harder than the daily pain- the self esteem issues and body issues. It is just not possible to have your body go through that many things and be able to feel confident at the same time. Not for me anyway. As women we generally don't like many things about ourselves, but this goes deeper than "I'm so fat" because you are a size 8 and are allowing advertising to tell you what a gorgeous body is. This is mental. Like seriously mental and so skewed I have no real idea what I look like. Logically I know I'm small based on my clothing size. But I look and am disgusted at what I see. I think I need to lose easily 10 pounds. I weigh 115. Yeah. I know. Insane. But it's the way IBD is a mind fuck. Full on no escape. Years of weight flux and meds and food issues drags you over the coals. 

I know this post went all over on you and I'm sorry. I basically wanted to update but once I hit something the feels flood and I go with it. 

My 4 year old had to draw her family at school. Mommy was laying in bed. I can't tell you how much of a shot to the heart that was. Just devastating. There's my mommy. The lump in bed with the heat pad. I feel like a let down. A bum deal for my kids and my husband. I know they don't feel that but I do. I resent myself for them. I have guilt about things they don't consider. It eats away at me. It makes me feel empty. It makes life feel like it's vanishing and those moments I am supposed to jump at are just out of reach. I see them but I'm just so exhausted. 

Sorry this was a long one but it's been a bit and it's been months of a lot of emotional and mental shit to process. And now some physical recovery again. I'm gambling on this but my odds are good. Lucky 7. They have to be. I've got nothing but time until then. Not appointments. Just playing the hand I'm dealt until it's go time. So in case I don't write before then, I'll see ya on the other side from an uncomfortable hospital bed getting no sleep but with some glorious IV dilaudid. 

Be thankful for your health. Love your guts and don't take for granted all those mornings you are able to jump up and go with zero struggle. Thanks for reading. 

Yeah yeah it's been a while. Things have been crap and I wasn't going to keep regurgitating the same whiny stuff over and over. In my last post I referenced my surgeon going in to clean out adhesions and check things out. Well, the time has come. I've done pain management. I've tried every med to change my system and alter how my guts process. Muscle relaxers. Opiates. Injections. Cholesterol meds to reduce stomach acid. You name it. It hurts when I starve. It hurts when I eat. It hurts when I Stretch in the morning. You know that glorious morning stretch!? Nope for me it's like hot pokers. And that's just my internal abdominal pain.

 I'm not even getting into digestive issues, skin issues, chronic fatigue, dehydration, being lightheaded. I haven't even blogged about my surgical procedure a few months back to heal up fissures in places that shall not be named and the horrifying, humiliating side effects that brought on. And who knew Botox went in your butt!? It can.  

I won't bore you with what has become my mundane health issues that for the average person aren't mundane. Pain that I suffer through at home that would drive most to the ER. Health issues that a few years ago I so naively thought would be taken care of and I could move on. Now I have given in to the fact that this is a life style. I have finally resigned that IBD isn't what I'm getting over. 

My exhaustion and inability to avoid recovery time from a day out. I've been told to do yoga, do Pilates, work on the scar tissue, try to regain my muscle mass. How the hell can I do that when a trip to Target and lunch wipes me out for a day and a half? Seriously. A big ole WTF with that.  

So it has come to me getting opened back up. Again. He'll be starting higher up, above my belly button so he can get in at a clean area without scar tissue and work down through it. He'll clean me out, load my guts up with some Seprafilm which adheres to tissue and prevents adhesions from forming and attaching. That's key because the catch 22 with an adhesion surgery is, every time you have surgery, you are bound to develop adhesions. My surgeon never goes in to do this JUST for this reason but he's making an exception for me. I'm that special. And we are hoping for the best. Risks of another Ostomy, injury to surrounding organs, resections etc...have not discouraged me in any way. Something has to give and open abdominal surgery does not scare me or intimidate me anymore. I'll have a bigger scar and more badassery.  So my date is October 16th. One month to mentally prepare for recovery and enhanced FrankenBelly. He's going to poke around and shoot up my Lavator muscle with some Botox too while he's in there to hopefully knock out the excruciating spasms I have that stop me in my tracks on a daily basis. 

It has been a rough patch for me since the spring. I finished the Paralegal degree program despite all this crap going on, but the nagging in the back of my head regarding my self worth, and the continuous battle to maintain a smidgen of self esteem is exhausting. Looking in the mirror and questioning yourself and your worth because you are so beat down and defeated day in and day out is indescribable. I'm my own worst critic. My own worst enemy. I think that has become harder than the daily pain- the self esteem issues and body issues. It is just not possible to have your body go through that many things and be able to feel confident at the same time. Not for me anyway. As women we generally don't like many things about ourselves, but this goes deeper than "I'm so fat" because you are a size 8 and are allowing advertising to tell you what a gorgeous body is. This is mental. Like seriously mental and so skewed I have no real idea what I look like. Logically I know I'm small based on my clothing size. But I look and am disgusted at what I see. I think I need to lose easily 10 pounds. I weigh 115. Yeah. I know. Insane. But it's the way IBD is a mind fuck. Full on no escape. Years of weight flux and meds and food issues drags you over the coals. 

I know this post went all over on you and I'm sorry. I basically wanted to update but once I hit something the feels flood and I go with it. 

My 4 year old had to draw her family at school. Mommy was laying in bed. I can't tell you how much of a shot to the heart that was. Just devastating. There's my mommy. The lump in bed with the heat pad. I feel like a let down. A bum deal for my kids and my husband. I know they don't feel that but I do. I resent myself for them. I have guilt about things they don't consider. It eats away at me. It makes me feel empty. It makes life feel like it's vanishing and those moments I am supposed to jump at are just out of reach. I see them but I'm just so exhausted. 

Sorry this was a long one but it's been a bit and it's been months of a lot of emotional and mental shit to process. And now some physical recovery again. I'm gambling on this but my odds are good. Lucky 7. They have to be. I've got nothing but time until then. Not appointments. Just playing the hand I'm dealt until it's go time. So in case I don't write before then, I'll see ya on the other side from an uncomfortable hospital bed getting no sleep but with some glorious IV dilaudid. 

Be thankful for your health. Love your guts and don't take for granted all those mornings you are able to jump up and go with zero struggle. Thanks for reading. 

Post #90. Suck it, IBD. Still.

I haven't written a blog post since October. I don't really have a very good reason for it. Mostly, I'm sick of myself and my issues and have nothing new to say. I'm in pain daily. In multiple spots. Abdominal. Rectal from fissures and hopefully not more cuffitis. It has been concluded that all my abdominal pain is from adhesions(bands of scar tissue) from being opened up a bazillion times. They can go in and remove them, but guess what?! It creates the risk of MORE adhesions!!! Woooohoooooo. What an awesome catch 22.

So I starting seeing pain management last week. I can't even believe I need to deal with this. I got some injections on Monday. So there's that. Needles jabbed an inch and a half into my incision scars with the hopes that it'll help the widespread pain. I'm doubtful. My pain is not superficial. It's deep. This is not incision pain spreading out. It's a nice effort to start but screw that shit. I hate when I KNOW because it's MY BODY but my lack of a medical degree means I have no idea. So there's that. It's pretty fun.

My surgeon is not one to just cut. I respect him for that. And he specifically won't just go in for adhesions, but he has told me he may break his rule for me. Which is sweet in a weird surgical, chronically ill kinda way. I actually looked at him when he said it and said, "awwww, you would?". Being sick skews how completely whacked something is. Like what normal person would think someone offering to reopen you midline, was sweet? Uhhhh no one. That would sound like torture. But eh, just another day.

I've been having serious self esteem and motivation issues. I'm just sad that this is what is STILL happening. I went back and read some old blogs recently. Especially the ones immediately after my colectomy. I cried. The optimism in those words is long gone. It almost sounds ridiculous. I really thought this would be an easy peasy fix. JPouches are common enough. Colectomies happen all the time. People move on and live life and are active and happy. And then there's me. Still with this bullshit. My colectomy anniversary is 3 years next month. Seriously WTF. I always knew I'd never be normal but I never imagined I'd still be fighting the pain daily for this long. It's not fair.
I barely eat because it's not worth the pain to do so. My days are clouded from meds. I can't get out of bed. If I have a 9am appointment it is nearly impossible for me to make that happen.
I suck. I'm useless. That's how I feel. My entire existence has become completely inconvenient to everyone around me. For me to be "normal" and get dressed and go out and do things requires a level of will power I can't explain in words. And then that outing wipes me out for 2 days. And when I say outing I mean a day I go grocery shopping and lunch. Going to brunch. Hell, I went to the zoo Saturday and it's Wednesday and I'm still wiped out. And a raging sore throat and body aches have started which is letting me know I over did it. BY WALKING AROUND THE ZOO.
My immune system sucks. I've been over this shit for 2 years. Everyday I have a mantra in my head, "Just get through today". Isn't that the most pathetic thing you've ever heard?! Just get through life. Everyday. I don't know what I'm getting through it for because saying that usually means there's something better after you get through it. I don't feel that anymore. I don't feel that "It'll all be worth it" feeling. It sucks.
This is life with IBD. Real life. Not some stupid Crohns and Colitis foundation ad of people looking all healthy and "managing" their IBD. It's such bullshit. I can't manage a shower much less manage a "normal" daily life. THINKING about doing things exhausts me. So when you see me and I'm put together and dressed and my face is on and I'm smiling, just know how much effort I am putting in to not see my pain. When I'm out or on vacation, know how much it took for me to make that happen. Not eating the day before. A lot of meds. Giving up the next few days. It's hard but I've become a pro. I don't want to be but apparently this is what I have to work with. I'm just tired of doing it but I can't exactly quit. It's like being stuck with some soul sucking job you fucking hate and resent having to go to every single day including unpaid overtime and that's just your lot in life. Suck it Ulcerative Colitis. Just suck it.

I haven't written a blog post since October. I don't really have a very good reason for it. Mostly, I'm sick of myself and my issues and have nothing new to say. I'm in pain daily. In multiple spots. Abdominal. Rectal from fissures and hopefully not more cuffitis. It has been concluded that all my abdominal pain is from adhesions(bands of scar tissue) from being opened up a bazillion times. They can go in and remove them, but guess what?! It creates the risk of MORE adhesions!!! Woooohoooooo. What an awesome catch 22.

So I starting seeing pain management last week. I can't even believe I need to deal with this. I got some injections on Monday. So there's that. Needles jabbed an inch and a half into my incision scars with the hopes that it'll help the widespread pain. I'm doubtful. My pain is not superficial. It's deep. This is not incision pain spreading out. It's a nice effort to start but screw that shit. I hate when I KNOW because it's MY BODY but my lack of a medical degree means I have no idea. So there's that. It's pretty fun.

My surgeon is not one to just cut. I respect him for that. And he specifically won't just go in for adhesions, but he has told me he may break his rule for me. Which is sweet in a weird surgical, chronically ill kinda way. I actually looked at him when he said it and said, "awwww, you would?". Being sick skews how completely whacked something is. Like what normal person would think someone offering to reopen you midline, was sweet? Uhhhh no one. That would sound like torture. But eh, just another day.

I've been having serious self esteem and motivation issues. I'm just sad that this is what is STILL happening. I went back and read some old blogs recently. Especially the ones immediately after my colectomy. I cried. The optimism in those words is long gone. It almost sounds ridiculous. I really thought this would be an easy peasy fix. JPouches are common enough. Colectomies happen all the time. People move on and live life and are active and happy. And then there's me. Still with this bullshit. My colectomy anniversary is 3 years next month. Seriously WTF. I always knew I'd never be normal but I never imagined I'd still be fighting the pain daily for this long. It's not fair.
I barely eat because it's not worth the pain to do so. My days are clouded from meds. I can't get out of bed. If I have a 9am appointment it is nearly impossible for me to make that happen.
I suck. I'm useless. That's how I feel. My entire existence has become completely inconvenient to everyone around me. For me to be "normal" and get dressed and go out and do things requires a level of will power I can't explain in words. And then that outing wipes me out for 2 days. And when I say outing I mean a day I go grocery shopping and lunch. Going to brunch. Hell, I went to the zoo Saturday and it's Wednesday and I'm still wiped out. And a raging sore throat and body aches have started which is letting me know I over did it. BY WALKING AROUND THE ZOO.
My immune system sucks. I've been over this shit for 2 years. Everyday I have a mantra in my head, "Just get through today". Isn't that the most pathetic thing you've ever heard?! Just get through life. Everyday. I don't know what I'm getting through it for because saying that usually means there's something better after you get through it. I don't feel that anymore. I don't feel that "It'll all be worth it" feeling. It sucks.
This is life with IBD. Real life. Not some stupid Crohns and Colitis foundation ad of people looking all healthy and "managing" their IBD. It's such bullshit. I can't manage a shower much less manage a "normal" daily life. THINKING about doing things exhausts me. So when you see me and I'm put together and dressed and my face is on and I'm smiling, just know how much effort I am putting in to not see my pain. When I'm out or on vacation, know how much it took for me to make that happen. Not eating the day before. A lot of meds. Giving up the next few days. It's hard but I've become a pro. I don't want to be but apparently this is what I have to work with. I'm just tired of doing it but I can't exactly quit. It's like being stuck with some soul sucking job you fucking hate and resent having to go to every single day including unpaid overtime and that's just your lot in life. Suck it Ulcerative Colitis. Just suck it.