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

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

Who's life is this anyway?

Well, it has come to this. I waited a bit after surgery to write because I just wasn't up to it and have not been really happy with everything about myself.
My week in the hospital was HORRIBLE. HORRIBLE. It took forever to get going because my one surgeon AND the anesthesiologist got stuck in another surgery at a different hospital. So I sat around like this, in pain, for HOURS. Hungry. Anxious. Freezing. In asshole Christmas socks.

But then they finally showed up and I got good drugs. Oh and 2 units of blood. Naturally. My hemoglobin was in the 6s. Yeah. How I don't pass out on a regular basis is beyond me. 

****Do me a favor people. Donate blood. Even if it's once a year. I've officially had enough units to replace 100% of my blood volume. And I've never been able to give back because of meds or because it's too close to the most recent transfusion. So please. Go do it for me.****

Then it was go time. Slice and dice. Again. Done. Over it. 

Post OP they could not get my pain under control for almost 48 hours. I was at a 10/10 the first night into the next day. I wanted someone to just shoot me in the head. My PCA wouldn't light up fast enough. My EVA from WALL-E. A little magic button of pain relief. Here I am stoned. Yet still in pain. It just wasn't enough.

I can't even describe it. Internal pain, external incision pain, pain from the new stoma, my stomach screaming at me because it hadn't had anything in it in almost 48 hours. Not even an ice chip. If I could have strangled someone with my IV lines I would have. But it hurt too much to move. Plus it's really tough getting an IV going on me so I didn't want to risk losing one. While I was under the anesthesiologist gave me a "back up" IV because I blow IVs like it's my job with my shitty little veins. Then I crossed into ileus which is when your guts aren't entirely awake yet after surgery. Paralysis. So they gave me the ok for liquids and I couldn't help myself. JELLO!!! The apple juice was the greatest thing I'd ever had. By this time I hadn't eaten or drank in 3 days. Here is what sent me into a personal hell for 48 hours. Mind you that's about all I ate. Maybe 3 tiny bites. And I paid for it for 2 days.

 The intestinal pain started because some things were working and some weren't. Then I started barfing my brains out. Violent and disgusting. It was unlike anything I had ever experienced and I'm pretty sure I wanted to die. Again. I missed getting an NG tube by the skin of my teeth. That's when they put a tube down your nose and throat into your stomach and suck everything out so you aren't getting sick anymore. I just couldn't handle that on top of everything else. So I kept puking and crying and dealing with the pain and sickness hoping it would stop. My colorectal surgeon gave me until the next morning and then I was getting one put in. The ileus has the same symptoms of a blockage so he was getting worried. My nurses must have thought I was nuts. They told me to get one. Easy for them to say. Luckily it passed. I could sip a little bit while on Zofram and Phenergan and be ok, so I got through it without one more invasive event happening.
So then finally after the 5th day I felt like I was moving toward recovery. I was finally walking and Hubs and Daughter #2 joined me with her balloon gloves.

Anyway- I've been crabby. This hospital stay crossed some emotional line with me. Maybe because it was multiple procedures in one. Maybe because I thought the hospital sucked. Half my nurses thought I'd only had a hysterectomy. The other half an ileostomy. In my week there I didn't meet one person (aside from my surgeons) who were aware I had multiple procedures in my surgery. One shift of nurses didn't even acknowledge my OBGYN as a doctor. I needed a new gown and was so out of it. So on one of her visits she buzzed and asked them where the gowns were. They pointed. Oh yeah. Pointed. That went over like a lead balloon. She proceeded to stay with me for an hour just talking to me. Changed my gown herself and took care of me. She is seriously the best doctor I have ever met. Popped in on her off Saturday with her DAUGHTER to check on me. Her partner was on call but she came anyway because she was worried about me. She's amazing. But I digress. I've been feeling beaten and defeated. I don't want to do this shit anymore. I've had it. I've had it with recovery. With being cut open. With scars and pain and hospitals. HAD IT. My FrankenBelly is worse. It is hideous. They cut through scar tissue so it just aches. My stoma is bleeding around the outside. Here's my new Stupid Stoma. I will say having already had one, the adjustment to it has been leaps and bounds better. I'm emotionally removed from the event. I am having some minor skin issues but I think I'm top of it since I've done this before. He moved it closer to my belly button this time which kinda pissed me off because it's really hard getting a good seal on your wafer with the crevice of your belly button so close to the stoma. But I'm small and he has to put it in a certain spot based on abdominals (that I barely have anyway) so his choices are limited.

It hurts all around it internally. I have sharp internal pain where my sausage fallopian tube was. It's probably just tissue that's healing but it hurts likes a bitch. I don't know. Sometimes I seriously don't know how the hell I continually go through this crap and keep it together. I'm close to losing it I think.
I was going to go to NY after Christmas to go to my Aunt's wedding. Then the surgery got pushed to December so I couldn't. The wedding was last night and seeing the pictures today have made me really sad and really prompted me finally writing this post. I'm sick of things interfering with MY life and what I want to do. So I missed my Aunt's wedding and I'm sad about it. I don't DO anything. My pain and surgeries and issues rule my activities, or lack thereof. WTF am I doing? I know I've said it before but it seriously like years of my life have slipped away. There's always something that is a roadblock to me living. This year Christmas was a wreck because I was in recovery mode. So I couldn't do what I wanted. I've lost almost 10lbs and I'm tired. I'm dehydrated. Making dinner killed me for 3 days. I definitely overdid it last week with my mom and stepdad here. I didn't even do much but I overdid it. What was I supposed to do? Lay in bed with people in town? I mean what the hell. Something has to give. Not to mention what I spend on meds and now will be spending on ostomy supplies for the next few months. I'm in a funk. I hate myself. I'm exhausted. I'm hurting. It's another month gone. Another winter I didn't go to a tropical island with my husband. Another event I missed.
On top of it, I have incompletes in my classes because I couldn't take my finals. So I will have to deal with that in the next few weeks. Kind of nervous. The hiatus probably did nothing for my retention. Sucks. Just sucks.
So yeah. That's me. Crabby. Cut up. No motivation. I feel more broken than ever. And you know what literally feels like a stab in the chest? I shouldn't say it because everything is relative but that fact doesn't change how it makes me feel. It kills me when people complain about the smallest thing. It's really hard to hear people complain about how absolutely miserable they are with a head cold, their flight is delayed or whatever when I'm stapled shut AGAIN and my kids and their holiday impacted by that fact. People take their health for granted so much. Take their abilities for granted. Jumping up and playing with their kids. Spending hours making cookies. Shopping for that perfect gift. Actually being able to get on a plane to travel. I'd take a 7 hour delay to be able to go away but it seems I never can. Pop some alka seltzer for your cold. Have some drinks at the airport and people watch. Be grateful you don't have chronic pain. Or have been gutted more than once. Or have kids who are used to you being sick and in the hospital. =(  Sorry, like I said I know everything is relative but I can't help it. I would have killed to have had some of the "problems" some people have had over the holidays. That's my reality. I don't know when it'll change or if it ever will. I don't know that this temporary ostomy will work. Maybe my guts don't know how to be healthy. Maybe my pouchitis and flares will come back after my NEXT surgery. It's all a crap shoot. I know this though... at some point I will do what I want anyway whether it be while in pain or during recovery or whatever because I have had it with my life not feeling like mine. I go days without going outside. I've become the anti-Lisa. I am so far from who I was and I can only hope that these years of bullshit haven't erased all of it. I already feel a big part of me not caring. Of letting opportunities pass by because it will take so much out of me to make it happen. That was never me. If I won a vacation tomorrow there is a part of me that wouldn't care. That would assume I couldn't do it, or it would be too much work or I'd get there and not be able to do what I wanted. It sucks. That negative fog just keeps trying to creep around and win. I just need one good stretch of time where I don't have any issues and I know it would go away. I just need to get there. Maybe in 2014.
Thanks for reading. Hope everyone had a wonderful whatever holiday they celebrate. Happy New Year.
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Well, it has come to this. I waited a bit after surgery to write because I just wasn't up to it and have not been really happy with everything about myself.
My week in the hospital was HORRIBLE. HORRIBLE. It took forever to get going because my one surgeon AND the anesthesiologist got stuck in another surgery at a different hospital. So I sat around like this, in pain, for HOURS. Hungry. Anxious. Freezing. In asshole Christmas socks.

But then they finally showed up and I got good drugs. Oh and 2 units of blood. Naturally. My hemoglobin was in the 6s. Yeah. How I don't pass out on a regular basis is beyond me. 

****Do me a favor people. Donate blood. Even if it's once a year. I've officially had enough units to replace 100% of my blood volume. And I've never been able to give back because of meds or because it's too close to the most recent transfusion. So please. Go do it for me.****

Then it was go time. Slice and dice. Again. Done. Over it. 

Post OP they could not get my pain under control for almost 48 hours. I was at a 10/10 the first night into the next day. I wanted someone to just shoot me in the head. My PCA wouldn't light up fast enough. My EVA from WALL-E. A little magic button of pain relief. Here I am stoned. Yet still in pain. It just wasn't enough.

I can't even describe it. Internal pain, external incision pain, pain from the new stoma, my stomach screaming at me because it hadn't had anything in it in almost 48 hours. Not even an ice chip. If I could have strangled someone with my IV lines I would have. But it hurt too much to move. Plus it's really tough getting an IV going on me so I didn't want to risk losing one. While I was under the anesthesiologist gave me a "back up" IV because I blow IVs like it's my job with my shitty little veins. Then I crossed into ileus which is when your guts aren't entirely awake yet after surgery. Paralysis. So they gave me the ok for liquids and I couldn't help myself. JELLO!!! The apple juice was the greatest thing I'd ever had. By this time I hadn't eaten or drank in 3 days. Here is what sent me into a personal hell for 48 hours. Mind you that's about all I ate. Maybe 3 tiny bites. And I paid for it for 2 days.

 The intestinal pain started because some things were working and some weren't. Then I started barfing my brains out. Violent and disgusting. It was unlike anything I had ever experienced and I'm pretty sure I wanted to die. Again. I missed getting an NG tube by the skin of my teeth. That's when they put a tube down your nose and throat into your stomach and suck everything out so you aren't getting sick anymore. I just couldn't handle that on top of everything else. So I kept puking and crying and dealing with the pain and sickness hoping it would stop. My colorectal surgeon gave me until the next morning and then I was getting one put in. The ileus has the same symptoms of a blockage so he was getting worried. My nurses must have thought I was nuts. They told me to get one. Easy for them to say. Luckily it passed. I could sip a little bit while on Zofram and Phenergan and be ok, so I got through it without one more invasive event happening.
So then finally after the 5th day I felt like I was moving toward recovery. I was finally walking and Hubs and Daughter #2 joined me with her balloon gloves.

Anyway- I've been crabby. This hospital stay crossed some emotional line with me. Maybe because it was multiple procedures in one. Maybe because I thought the hospital sucked. Half my nurses thought I'd only had a hysterectomy. The other half an ileostomy. In my week there I didn't meet one person (aside from my surgeons) who were aware I had multiple procedures in my surgery. One shift of nurses didn't even acknowledge my OBGYN as a doctor. I needed a new gown and was so out of it. So on one of her visits she buzzed and asked them where the gowns were. They pointed. Oh yeah. Pointed. That went over like a lead balloon. She proceeded to stay with me for an hour just talking to me. Changed my gown herself and took care of me. She is seriously the best doctor I have ever met. Popped in on her off Saturday with her DAUGHTER to check on me. Her partner was on call but she came anyway because she was worried about me. She's amazing. But I digress. I've been feeling beaten and defeated. I don't want to do this shit anymore. I've had it. I've had it with recovery. With being cut open. With scars and pain and hospitals. HAD IT. My FrankenBelly is worse. It is hideous. They cut through scar tissue so it just aches. My stoma is bleeding around the outside. Here's my new Stupid Stoma. I will say having already had one, the adjustment to it has been leaps and bounds better. I'm emotionally removed from the event. I am having some minor skin issues but I think I'm top of it since I've done this before. He moved it closer to my belly button this time which kinda pissed me off because it's really hard getting a good seal on your wafer with the crevice of your belly button so close to the stoma. But I'm small and he has to put it in a certain spot based on abdominals (that I barely have anyway) so his choices are limited.

It hurts all around it internally. I have sharp internal pain where my sausage fallopian tube was. It's probably just tissue that's healing but it hurts likes a bitch. I don't know. Sometimes I seriously don't know how the hell I continually go through this crap and keep it together. I'm close to losing it I think.
I was going to go to NY after Christmas to go to my Aunt's wedding. Then the surgery got pushed to December so I couldn't. The wedding was last night and seeing the pictures today have made me really sad and really prompted me finally writing this post. I'm sick of things interfering with MY life and what I want to do. So I missed my Aunt's wedding and I'm sad about it. I don't DO anything. My pain and surgeries and issues rule my activities, or lack thereof. WTF am I doing? I know I've said it before but it seriously like years of my life have slipped away. There's always something that is a roadblock to me living. This year Christmas was a wreck because I was in recovery mode. So I couldn't do what I wanted. I've lost almost 10lbs and I'm tired. I'm dehydrated. Making dinner killed me for 3 days. I definitely overdid it last week with my mom and stepdad here. I didn't even do much but I overdid it. What was I supposed to do? Lay in bed with people in town? I mean what the hell. Something has to give. Not to mention what I spend on meds and now will be spending on ostomy supplies for the next few months. I'm in a funk. I hate myself. I'm exhausted. I'm hurting. It's another month gone. Another winter I didn't go to a tropical island with my husband. Another event I missed.
On top of it, I have incompletes in my classes because I couldn't take my finals. So I will have to deal with that in the next few weeks. Kind of nervous. The hiatus probably did nothing for my retention. Sucks. Just sucks.
So yeah. That's me. Crabby. Cut up. No motivation. I feel more broken than ever. And you know what literally feels like a stab in the chest? I shouldn't say it because everything is relative but that fact doesn't change how it makes me feel. It kills me when people complain about the smallest thing. It's really hard to hear people complain about how absolutely miserable they are with a head cold, their flight is delayed or whatever when I'm stapled shut AGAIN and my kids and their holiday impacted by that fact. People take their health for granted so much. Take their abilities for granted. Jumping up and playing with their kids. Spending hours making cookies. Shopping for that perfect gift. Actually being able to get on a plane to travel. I'd take a 7 hour delay to be able to go away but it seems I never can. Pop some alka seltzer for your cold. Have some drinks at the airport and people watch. Be grateful you don't have chronic pain. Or have been gutted more than once. Or have kids who are used to you being sick and in the hospital. =(  Sorry, like I said I know everything is relative but I can't help it. I would have killed to have had some of the "problems" some people have had over the holidays. That's my reality. I don't know when it'll change or if it ever will. I don't know that this temporary ostomy will work. Maybe my guts don't know how to be healthy. Maybe my pouchitis and flares will come back after my NEXT surgery. It's all a crap shoot. I know this though... at some point I will do what I want anyway whether it be while in pain or during recovery or whatever because I have had it with my life not feeling like mine. I go days without going outside. I've become the anti-Lisa. I am so far from who I was and I can only hope that these years of bullshit haven't erased all of it. I already feel a big part of me not caring. Of letting opportunities pass by because it will take so much out of me to make it happen. That was never me. If I won a vacation tomorrow there is a part of me that wouldn't care. That would assume I couldn't do it, or it would be too much work or I'd get there and not be able to do what I wanted. It sucks. That negative fog just keeps trying to creep around and win. I just need one good stretch of time where I don't have any issues and I know it would go away. I just need to get there. Maybe in 2014.
Thanks for reading. Hope everyone had a wonderful whatever holiday they celebrate. Happy New Year.
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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. =-)

Bionic feet and crafty wonders...

Well, I kinda sorta made the wreath I saw on Pinterest. I did run out of bulbs halfway but I think I did an ok job with what I had. Metal coat hanger that I scrounged from a friend, and some bulbs I bought that never really went with anything but I couldn't throw out. Here is a pic of my ring o'balls.

It's not as I had envisioned it but it works for me. I may rearrange some bulbs if I'm feeling ambitious but probably not. Let's hope the Grinch that stole my other one doesn't strike again.
I finally got all the wrapping and steri-strips off my foot from surgery. I haven't washed that foot since Thanksgiving weekend. Gross. I can finally shower without a bag sealed around my foot.
Here's a before and after.

There's still quite a bit of swelling and my range of motion isn't even close to 100% but I'm getting there. I have to exercise my toe a few times daily to get flexibility back and stop scar tissue from forming so I can use my foot properly. It really hurts to bend a toe that doesn't want to bend. I have two screws in there. So I am bionic. I still hate feet. That won't change. =)

In other news, I am full on raging about doctor's and insurance companies. I am so over it. My foot surgeon used an assistant surgeon. Well, said assistant is out of network. Apparently, I was supposed to ask my surgeon's office if the assistant was in network prior to agreeing to surgery. Would you have asked knowing your actually surgeon is in network?? I didn't even think about it. Why would I? So apparently I owe this assistant surgeon that I had no input about, $1300. Yeah right.... I'm not paying it. Such bullshit. I am so DONE with doctor's and meds, and insurance claims and blood work, and appointments. DONE! I just hung up with my insurance company and apparently I'M the idiot for not being more intuitive that I should have asked. Did I mention I called my insurance company prior to surgery and asked about an assistant surgeon being covered? Oh yeah. I was told I have 100% surgical coverage that covers anyone who needs to be in the OR. Ok... swell... let's move ahead. Now, AFTER THE FACT, the assistant surgeon isn't lumped into that. My cheeks are hot. I'm appealing it naturally, but I'm sure it won't matter. I was having a perfectly fine day until this happening. I'm sick about it. But can you imagine if I had asked and they said, oh the guy who assists is out of network and I said I didn't want him there? I probably would have had to find a new surgeon. It's so ridiculous I could scream.
I'm going to go outside in the cold and look at my crafty ring o'balls and hopefully snap out of my rage so I can call my surgeons office and not sound like someone related to Honey Boo Boo. I'm so mad the F bombs would be flying. So I'm going to take pause. I'll let you know what happens. What a crock of shit.

Well, I kinda sorta made the wreath I saw on Pinterest. I did run out of bulbs halfway but I think I did an ok job with what I had. Metal coat hanger that I scrounged from a friend, and some bulbs I bought that never really went with anything but I couldn't throw out. Here is a pic of my ring o'balls.

It's not as I had envisioned it but it works for me. I may rearrange some bulbs if I'm feeling ambitious but probably not. Let's hope the Grinch that stole my other one doesn't strike again.
I finally got all the wrapping and steri-strips off my foot from surgery. I haven't washed that foot since Thanksgiving weekend. Gross. I can finally shower without a bag sealed around my foot.
Here's a before and after.

There's still quite a bit of swelling and my range of motion isn't even close to 100% but I'm getting there. I have to exercise my toe a few times daily to get flexibility back and stop scar tissue from forming so I can use my foot properly. It really hurts to bend a toe that doesn't want to bend. I have two screws in there. So I am bionic. I still hate feet. That won't change. =)

In other news, I am full on raging about doctor's and insurance companies. I am so over it. My foot surgeon used an assistant surgeon. Well, said assistant is out of network. Apparently, I was supposed to ask my surgeon's office if the assistant was in network prior to agreeing to surgery. Would you have asked knowing your actually surgeon is in network?? I didn't even think about it. Why would I? So apparently I owe this assistant surgeon that I had no input about, $1300. Yeah right.... I'm not paying it. Such bullshit. I am so DONE with doctor's and meds, and insurance claims and blood work, and appointments. DONE! I just hung up with my insurance company and apparently I'M the idiot for not being more intuitive that I should have asked. Did I mention I called my insurance company prior to surgery and asked about an assistant surgeon being covered? Oh yeah. I was told I have 100% surgical coverage that covers anyone who needs to be in the OR. Ok... swell... let's move ahead. Now, AFTER THE FACT, the assistant surgeon isn't lumped into that. My cheeks are hot. I'm appealing it naturally, but I'm sure it won't matter. I was having a perfectly fine day until this happening. I'm sick about it. But can you imagine if I had asked and they said, oh the guy who assists is out of network and I said I didn't want him there? I probably would have had to find a new surgeon. It's so ridiculous I could scream.
I'm going to go outside in the cold and look at my crafty ring o'balls and hopefully snap out of my rage so I can call my surgeons office and not sound like someone related to Honey Boo Boo. I'm so mad the F bombs would be flying. So I'm going to take pause. I'll let you know what happens. What a crock of shit.