Time disappears. Faster the less you use to live.

**I started this in midSeptember and never came back.  I just didn't want to put it out there. I have since turned 40. I don’t feel much different. But I have to speak my truth and let it fall. I obviously never finished this. I’ve done a few vlogs since and find it’s easier even though they can be longer. For World IBD day I'll finally post.   GutsyLisa919** https://www.youtube.com/channel/UCoG5ntpAUYkK_YyceAdgBcQ

So I've been meaning to write since the spring. I don't know why I never came back. It's been almost a year. Does anyone give a shit? Notice I haven't written? Probably not. Let's be real. I don't exactly keep quiet. Not much has changed but seems everything. I feel overwhelmed by this feeling of time lately. What I've missed. What I didn't do with so much of it. Maybe it's this looming 40. Anyone who knows me knows my birthday is basically a holiday and should be a week. I always imagined this one would be something amazing. I feel like I'm due. I lost a decade so quickly. It almost doesn't seem fair for this to be a thing. I try not to compare my life to others but, when I see what people are making happen and experiencing while I take 4 hour naps and see my surgeon or am not up to leaving the house, it's hard to not feel disappointed. No jealously. I'm happy for people. Amazed. I dislike myself. I dislike my inability to be who I was. I am disappointed that my internal drive and personality is no longer reflected in my life. I've become complacent and I suppose too accepting. And yet it's heartbreaking despite the realistic way I see myself. I feel very lonely. That's probably not the word. I guess I feel invisible. After years of inability I know I'm not considered. I don't have my tribe, as people like to say. And that's contrary to the first 31 years of my life. It's this thing I can't come to grips with. So it just makes me feel empty. Which makes me less ambitious if that is even possible.
In the current situation I've been home w the girls alone for 2 weeks bc husband is in NY handling family things. So I'm planning what I can do alone Tuesday. A great lunch? Somewhere I've been meaning to try or see. It is a fact that is upsetting. More than I can describe. This will be posted after to avoid possible sympathy plans etc... Me saying this isn't looking for pity or attention. If someone hasn't asked or planned something then that's authentic. And hey, I suppose that's fine. Out of sight out of mind. Not a person in people's lives enough to plan anything. It just makes me sad. The stark reality of what my life really is. What it might not be. My thoughts and goals just wrecked.
I've started journaling again when I can remember. I hesitate to really empty out like I used to Bc I had someone in the past decide to read all of them one day(going back to Middle School) and creating drama so I got rid of them all. I regret that. At this age I'd love to be able and read what was in my head at 14. But I can't. Nothing like an adult being jealous of me and what I did at 16 when they didn't even know me. And attempt to make me feel guilty for life already done that has zero impact. I’ll never trust my thoughts on paper completely unfiltered anymore.  But I digress.
I'm still fatigued. I'm less than 100# daily(Bc I'm nuts and weigh myself every morning.) Usually 97# in the morning. I'm just not healthy. Pain still. Definitely adhesions and muscle spasms. There are just certain places a muscle spasm should  NEVER happen. But I'm lucky like that.
It’s been really hard to hear people’s complaints lately. I’m not in a good place for sympathy. Especially when it comes in response to me trying to vent my disappointment and sadness. I don’t know. Maybe that’s selfish or bitchy. But it is. It's hard to here people's lives "suck" when they have no clue what an ideal situation they are in. Big picture. But it's all relative. I get it.

**I started this in midSeptember and never came back.  I just didn't want to put it out there. I have since turned 40. I don’t feel much different. But I have to speak my truth and let it fall. I obviously never finished this. I’ve done a few vlogs since and find it’s easier even though they can be longer. For World IBD day I'll finally post.   GutsyLisa919** https://www.youtube.com/channel/UCoG5ntpAUYkK_YyceAdgBcQ

So I've been meaning to write since the spring. I don't know why I never came back. It's been almost a year. Does anyone give a shit? Notice I haven't written? Probably not. Let's be real. I don't exactly keep quiet. Not much has changed but seems everything. I feel overwhelmed by this feeling of time lately. What I've missed. What I didn't do with so much of it. Maybe it's this looming 40. Anyone who knows me knows my birthday is basically a holiday and should be a week. I always imagined this one would be something amazing. I feel like I'm due. I lost a decade so quickly. It almost doesn't seem fair for this to be a thing. I try not to compare my life to others but, when I see what people are making happen and experiencing while I take 4 hour naps and see my surgeon or am not up to leaving the house, it's hard to not feel disappointed. No jealously. I'm happy for people. Amazed. I dislike myself. I dislike my inability to be who I was. I am disappointed that my internal drive and personality is no longer reflected in my life. I've become complacent and I suppose too accepting. And yet it's heartbreaking despite the realistic way I see myself. I feel very lonely. That's probably not the word. I guess I feel invisible. After years of inability I know I'm not considered. I don't have my tribe, as people like to say. And that's contrary to the first 31 years of my life. It's this thing I can't come to grips with. So it just makes me feel empty. Which makes me less ambitious if that is even possible.
In the current situation I've been home w the girls alone for 2 weeks bc husband is in NY handling family things. So I'm planning what I can do alone Tuesday. A great lunch? Somewhere I've been meaning to try or see. It is a fact that is upsetting. More than I can describe. This will be posted after to avoid possible sympathy plans etc... Me saying this isn't looking for pity or attention. If someone hasn't asked or planned something then that's authentic. And hey, I suppose that's fine. Out of sight out of mind. Not a person in people's lives enough to plan anything. It just makes me sad. The stark reality of what my life really is. What it might not be. My thoughts and goals just wrecked.
I've started journaling again when I can remember. I hesitate to really empty out like I used to Bc I had someone in the past decide to read all of them one day(going back to Middle School) and creating drama so I got rid of them all. I regret that. At this age I'd love to be able and read what was in my head at 14. But I can't. Nothing like an adult being jealous of me and what I did at 16 when they didn't even know me. And attempt to make me feel guilty for life already done that has zero impact. I’ll never trust my thoughts on paper completely unfiltered anymore.  But I digress.
I'm still fatigued. I'm less than 100# daily(Bc I'm nuts and weigh myself every morning.) Usually 97# in the morning. I'm just not healthy. Pain still. Definitely adhesions and muscle spasms. There are just certain places a muscle spasm should  NEVER happen. But I'm lucky like that.
It’s been really hard to hear people’s complaints lately. I’m not in a good place for sympathy. Especially when it comes in response to me trying to vent my disappointment and sadness. I don’t know. Maybe that’s selfish or bitchy. But it is. It's hard to here people's lives "suck" when they have no clue what an ideal situation they are in. Big picture. But it's all relative. I get it.

It's been a long time coming...

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Long time running...and I'm shot.

More I never updated this after my most recent surgery in October. My recovery was slow going. Getting opened up again and again takes its toll and I'm that much older, weaker and fatigued since it all began. 

I was in the hospital for a week. Pretty standard. Was on oxygen for a while because when they dig around in your abdomen it hurts to expand to full breathing. So you are suddenly a case for respiratory therapy and their visits. Oh and my white blood cell count dropped so everyone went crazy with masks and what not. It didn't help I was recovering on the oncology floor where something like that is very serious. My surgeon walked in and doubted it was an issue and he was right. The mask is a good look though. 

 

I had clumps of guts scarred together. A nice one that made a 4 months pregnant bulge when looking on my left is now gone! So bonus. Guts adhered to organs. Adhered to my abdominal wall. No wonder anything past liquids hurt to ingest. My guts couldn't move. They couldn't move the food. I'm lucky I didn't get an obstruction. Other than the adhesion removal that was planned and pretty much a mess, apparently I had some surprises in there. Who knew. What's left!? I had an ovarian cyst that was pretty substantial but hard to distinguish that pain when your entire abdominal cavity is in pain. I wouldn't have known if it burst. Keep in mind, those little egg makers are all that's left. They better keep it together. Well, then they realized, "oh, she has multiple small bowel tears" or what was coded as "perforated ulcers". So those needed to be closed. Which put a wedge in the whole, "Let's load you up with Seprafilm which will block scarring and more adhesions from forming". So yeah. And I'm proud to announce I'm pretty sure I have scar pain coming back. Pain in new places. So having mixed feelings about basically everything. Coming to terms with "constant" and "perpetual" issues, pain, treatment is not a fun concept. At all. Open abdominal surgery many times is horrible to recover from. 

Here is me I think 2 days post Op. Still in the hospital. Nice stapling through the belly button that was going to be questionable. 

FrankenBelly in full effect. My surgeon does a great job of cutting in the same spot. Like no kidding his cut is amazing. I still wish I had video of my guts out. So many opportunities. Told no every time. I wondered how this would all turn out. The last one healed well. This is today. 

It's not as flat as in the past but what can you expect when the same spot gets reopened again and again. And yes it's at an angle. And my belly button is there but  below the indentation at the very top of incision. It's very small. Amazed it survived. 

So now almost 3 months post Op I don't know anymore. Every time is supposed to be the big fix. I know this is how it goes with IBD and I've been dealing w it long enough to not be naive. But you come to a point where the fatigue is depressing. Being dehydrated limits you. The pain is just, well believe it or not, I'm so used to it that it's not even the biggest hinderance. I'll see my surgeon in a few days. Tell him about the new pain and he'll be ready to lose it. I'm his PITA patients bc my original surgery(colectomy and jpouch creation), was textbook. Apparently my pouch is gorgeous. As gorgeous as guts go. 

Most everything now is mental or emotional. IBD is like abuse you can never escape. This shadow of unknown and surprise. Can I grocery shop today? Can I drive or am I shot? It's like a crap shoot. Feeling like you have no control over what you can accomplish and plan has the most devastating impact. I'm hoping maybe this pain is recovery. My abdominal wall is clearly very weak. So maybe that's it. 

I have to remember I can't fall off the floor. And I'm better off than I have been for many years. But in the big picture isn't saying much. 

Many thanks for reading. Don't take your energy, health and capabilities for granted. XO

More I never updated this after my most recent surgery in October. My recovery was slow going. Getting opened up again and again takes its toll and I'm that much older, weaker and fatigued since it all began. 

I was in the hospital for a week. Pretty standard. Was on oxygen for a while because when they dig around in your abdomen it hurts to expand to full breathing. So you are suddenly a case for respiratory therapy and their visits. Oh and my white blood cell count dropped so everyone went crazy with masks and what not. It didn't help I was recovering on the oncology floor where something like that is very serious. My surgeon walked in and doubted it was an issue and he was right. The mask is a good look though. 

 

I had clumps of guts scarred together. A nice one that made a 4 months pregnant bulge when looking on my left is now gone! So bonus. Guts adhered to organs. Adhered to my abdominal wall. No wonder anything past liquids hurt to ingest. My guts couldn't move. They couldn't move the food. I'm lucky I didn't get an obstruction. Other than the adhesion removal that was planned and pretty much a mess, apparently I had some surprises in there. Who knew. What's left!? I had an ovarian cyst that was pretty substantial but hard to distinguish that pain when your entire abdominal cavity is in pain. I wouldn't have known if it burst. Keep in mind, those little egg makers are all that's left. They better keep it together. Well, then they realized, "oh, she has multiple small bowel tears" or what was coded as "perforated ulcers". So those needed to be closed. Which put a wedge in the whole, "Let's load you up with Seprafilm which will block scarring and more adhesions from forming". So yeah. And I'm proud to announce I'm pretty sure I have scar pain coming back. Pain in new places. So having mixed feelings about basically everything. Coming to terms with "constant" and "perpetual" issues, pain, treatment is not a fun concept. At all. Open abdominal surgery many times is horrible to recover from. 

Here is me I think 2 days post Op. Still in the hospital. Nice stapling through the belly button that was going to be questionable. 

FrankenBelly in full effect. My surgeon does a great job of cutting in the same spot. Like no kidding his cut is amazing. I still wish I had video of my guts out. So many opportunities. Told no every time. I wondered how this would all turn out. The last one healed well. This is today. 

It's not as flat as in the past but what can you expect when the same spot gets reopened again and again. And yes it's at an angle. And my belly button is there but  below the indentation at the very top of incision. It's very small. Amazed it survived. 

So now almost 3 months post Op I don't know anymore. Every time is supposed to be the big fix. I know this is how it goes with IBD and I've been dealing w it long enough to not be naive. But you come to a point where the fatigue is depressing. Being dehydrated limits you. The pain is just, well believe it or not, I'm so used to it that it's not even the biggest hinderance. I'll see my surgeon in a few days. Tell him about the new pain and he'll be ready to lose it. I'm his PITA patients bc my original surgery(colectomy and jpouch creation), was textbook. Apparently my pouch is gorgeous. As gorgeous as guts go. 

Most everything now is mental or emotional. IBD is like abuse you can never escape. This shadow of unknown and surprise. Can I grocery shop today? Can I drive or am I shot? It's like a crap shoot. Feeling like you have no control over what you can accomplish and plan has the most devastating impact. I'm hoping maybe this pain is recovery. My abdominal wall is clearly very weak. So maybe that's it. 

I have to remember I can't fall off the floor. And I'm better off than I have been for many years. But in the big picture isn't saying much. 

Many thanks for reading. Don't take your energy, health and capabilities for granted. XO

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.

I have purple hair and am not at my best.

Hello interweb friends. I hope everyone had a glorious end to their summer. Mine went by really fast even with recovery. It is now "fall" here in Texas at 80 degrees.
It's been way too long since I've written for various reasons I am too tired and too drained to recount here. For those that don't know me personally, my summer after surgery was a struggle, my trip was AMAZING with my family at the beach and school started with little fuss.

I have purple hair because, why not? If not now, when? So let's do this. 
I just had my 2 year anniversary of my original JPouch connection. So many mixed emotions and struggles continue to this day. Never having answers. Daily pain. Not feeling like I can plan or do what I want way too often and just continuous issues. Well, I am missing a major organ so my surprise is pretty naive. Life and your body functioning just can't work correctly missing something like a colon. My Jpouch is a slight replacement for it. The shittiest of substitutes and lacking functionality. It's annoying. I'm pissed. I'm tired. My pouchitis was/is back along with another fissure. So that would be approximately 3 months post op. Way too fast for that to have happened. Again. Considering my last ostomy was to rest my guts from chronic pouchitis. Discouraging isn't quite the word for any of it. In fact, I have nothing in my vocabulary arsenal to adequately describe my feelings to all you "normal" people.
I went into this blog post considering whether to express my positive "go get 'em" face or the real shit I have been struggling with the last 6 months or so. Not to say everything was great prior, but the last 6 months have just been eating at me. In terms of therapy, getting to be with my parents and siblings and all the nonsense that goes with our families was above and beyond anything else I could have tried. That week went too fast. I think I needed two. If I had to move back to the beach and breath the salt air daily it would be so great. I felt so much better too. Salt air fixes everything. And a giant, insane Italian family.
Anyway, I feel like I'm in this shitty, dark place in my head. I don't like myself much. After being out here almost 5 years, I have a handful of acquaintances who are great and I see now and then but don't have that support system of people that everyone needs. I don't have girls I go out with or call to whine or complain to or go get my nails done with or shop with. I don't have a hobby bc honestly after the time I put into school, my pain, my kids, the house, a hobby is more energy than I can spend.  I don't even know who I am anymore many times. I say "me" but in my head I'm referring to this pre-sick person not the current person. The current me is no where near the me in my head that I refer to in a delusion. It's maddening. It makes me sad. Illness aside, I went from always jumping at opportunity and being busy living, to not living my life. To limiting my experiences. And I hate it to my core.
I will never get my sick time back. I feel like I need to double down on time now. Make up for time in the hossie, time recovering from surgery and time where pain just wore me out. There's way too much I want to do. Too many places to see and things to experience. Laughter to be had and people to meet. I don't know. I feel like my life has been in limbo for quite a while. It was one thing being really sick, or in the hospital or with surgery recovery, but now it's just "chronic every single day, I can't win" pain and issues that impact my life. The mental exhaustion from the realization of how long it's been going on, what things I've missed or what I avoid, is huge. 

I don't mean to be a Debbie downer but it is exhausting trying to be "ok" all the time. To smile and make small talk when you want to lay in bed and wait for five minutes of feeling ok. It just sucks the life out of you. So there you have it. I really would love to always be upbeat and positive and looking forward to things but in all honesty that's rare and I'm miserable and life can suck it, big time. In the best way possible of course. I see my surgeon Thursday to tell him things still suck. Trying to live while in pain is the biggest suckfest. I think about going to Europe one day and it's depressing because of all the food I will not enjoy because if I do my trip will be ruined.  I swear there are days I could scream. But I'm too damn tired. 

Hello interweb friends. I hope everyone had a glorious end to their summer. Mine went by really fast even with recovery. It is now "fall" here in Texas at 80 degrees.
It's been way too long since I've written for various reasons I am too tired and too drained to recount here. For those that don't know me personally, my summer after surgery was a struggle, my trip was AMAZING with my family at the beach and school started with little fuss.

I have purple hair because, why not? If not now, when? So let's do this. 
I just had my 2 year anniversary of my original JPouch connection. So many mixed emotions and struggles continue to this day. Never having answers. Daily pain. Not feeling like I can plan or do what I want way too often and just continuous issues. Well, I am missing a major organ so my surprise is pretty naive. Life and your body functioning just can't work correctly missing something like a colon. My Jpouch is a slight replacement for it. The shittiest of substitutes and lacking functionality. It's annoying. I'm pissed. I'm tired. My pouchitis was/is back along with another fissure. So that would be approximately 3 months post op. Way too fast for that to have happened. Again. Considering my last ostomy was to rest my guts from chronic pouchitis. Discouraging isn't quite the word for any of it. In fact, I have nothing in my vocabulary arsenal to adequately describe my feelings to all you "normal" people.
I went into this blog post considering whether to express my positive "go get 'em" face or the real shit I have been struggling with the last 6 months or so. Not to say everything was great prior, but the last 6 months have just been eating at me. In terms of therapy, getting to be with my parents and siblings and all the nonsense that goes with our families was above and beyond anything else I could have tried. That week went too fast. I think I needed two. If I had to move back to the beach and breath the salt air daily it would be so great. I felt so much better too. Salt air fixes everything. And a giant, insane Italian family.
Anyway, I feel like I'm in this shitty, dark place in my head. I don't like myself much. After being out here almost 5 years, I have a handful of acquaintances who are great and I see now and then but don't have that support system of people that everyone needs. I don't have girls I go out with or call to whine or complain to or go get my nails done with or shop with. I don't have a hobby bc honestly after the time I put into school, my pain, my kids, the house, a hobby is more energy than I can spend.  I don't even know who I am anymore many times. I say "me" but in my head I'm referring to this pre-sick person not the current person. The current me is no where near the me in my head that I refer to in a delusion. It's maddening. It makes me sad. Illness aside, I went from always jumping at opportunity and being busy living, to not living my life. To limiting my experiences. And I hate it to my core.
I will never get my sick time back. I feel like I need to double down on time now. Make up for time in the hossie, time recovering from surgery and time where pain just wore me out. There's way too much I want to do. Too many places to see and things to experience. Laughter to be had and people to meet. I don't know. I feel like my life has been in limbo for quite a while. It was one thing being really sick, or in the hospital or with surgery recovery, but now it's just "chronic every single day, I can't win" pain and issues that impact my life. The mental exhaustion from the realization of how long it's been going on, what things I've missed or what I avoid, is huge. 

I don't mean to be a Debbie downer but it is exhausting trying to be "ok" all the time. To smile and make small talk when you want to lay in bed and wait for five minutes of feeling ok. It just sucks the life out of you. So there you have it. I really would love to always be upbeat and positive and looking forward to things but in all honesty that's rare and I'm miserable and life can suck it, big time. In the best way possible of course. I see my surgeon Thursday to tell him things still suck. Trying to live while in pain is the biggest suckfest. I think about going to Europe one day and it's depressing because of all the food I will not enjoy because if I do my trip will be ruined.  I swear there are days I could scream. But I'm too damn tired. 

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