Wednesday, April 29, 2015

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.

Monday, October 6, 2014

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. 

Tuesday, July 15, 2014

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

Tuesday, May 20, 2014

It's like this and like that and like this and ah...

So a few things. This is probably NOT going to be a shiny, happy post. Just warning. I'm a BITCH. First things first, yesterday was World IBD day and I posted and retweeted and what not which is fine bc all the other days of the year I do that too so it's cool. I was on a few sites and groups yesterday getting all bent out of shape. EVERY SINGLE THING was "bring awareness TODAY on World IBD day". "Wear your purple TODAY to bring awareness"... blah blah blah. Seriously. These are the same people who hide their illness, are ashamed of their scars, embarrassed by their ostomies and NEVER talk about their illness outside their locked down Facebook group. Hey, we all have our things. Not all of us are as comfortable with things as others are. I get it. BUT DON"T BLAST THE SHIT OUT OF THE INTERWEBS ONE DAY A YEAR IN THE NAME OF IBD AWARENESS. Because you blasting Twitter is NOT bringing awareness. The average person is not following #WorldIBDday. Bringing awareness to our illness is a DAILY job. You want people to "get" what IBD is about so bad? Do you really? Then open your mouth the OTHER 364 days a year in REAL life. I will guarantee I have enlightened more people this year NOT wearing purple and just by peppering my conversation with my struggle and NEVER hiding what I am, than you do wearing your purple that no one looks twice at. Wearing an ostomy bag to the beach and not hiding it will spark more conversation and offer more chances to inform and educate than posting meme's all damn day long on World IBD day. Don't get me wrong, I love that we have a day. But the point of that day is to be impactful!! Can we TRY to do that the right way going forward? All days? Ugh, sorry. I know I'm a bitch.

Here's my second issue. I am SICK and TIRED of being poked, prodded and tested. I mean just totally fed up. I went to the dentist today for a cleaning bc I've been putting it off. It's hard enough dealing with one thing. Dealing with my oral hygiene has not ranked up there lately. I brush multiple times a day, I floss daily. I'm not a negligent toothy person. But the dentist. Not urgent. Not when I have REAL issues. So I go and it was horrible. First off, my teeth have NEVER been the same since I've been sick. The steroids and the meds have ruined my teeth. Steroids destroy bone. My bone is lower in MANY spots under my gums from a few years ago. I have like 4 cavities and I think prior to getting sick I had 4 my whole life. So I had to schedule to go back for more torture with the cavities. In the meantime, my gums in the back were inflamed caused but me not going in for cleanings. It's just impossible to be as thorough brushing back there on your own apparently. So, I needed my gums LASERED today. Yeah. Freakin' smelled so bad. He was burning my face off. I was laying there just thinking, "This shit never ends with me". They got lasered so they could get at the tartar and bacteria that was beneath the inflamed part. So that was awesome. It didn't hurt because he numbed a lot with novacaine gel and what "hurts" for others isn't shit for me to flinch at anymore. BUT----I'm NEVER skipping a cleaning again. A little PSA- GO GET YOUR TEETH CLEANED!!!

Thirdly, I got set up for a surgery date for my second reversal. I am both excited and terrified. There's something really freaky about knowing what kind of pain you are in for. It is truly easier to be surprised by it. The determination hasn't been made about whether he's opening me up again, or going to be able to do everything local through my ostomy site. At this point I don't even care. What's getting cut open all the way for a third time? I basically have no feeling left around the scar so no chance making it worse. There are always risks no matter what. NOT being cut open doesn't even insure a faster recovery because last time my reversal recovery hurt. AND it was local through my ostomy. So flip a coin, doc. Let's do this. Five weeks from now and we are off. I'm having pain around my stoma site and pain passing output so I can't wait to get reversed. Even if I know how bad it's going to be.

I just have a lot going on in my head. Being chronically ill and always having in the back of your head that you'll need to get cut open again is exhausting. Truly exhausting. It's hard not to let it affect every day and the outlook I have in everything in my life. Recovery is exhausting. Pain kicks your ass. The last reversal turned into a slew of other problems which of course led to more complicated surgeries and another ostomy. Knowing that I'm basically going backwards into that situation again is hard because I can't help but have the little nag in my brain wondering if it's going to end up the same way in a vicious cycle of issues. Hoping not. Thanks for letting me vent.
---->> Get your teeth cleaned and don't take your health for granted. XO

Saturday, March 15, 2014

I had a very disgusting night.

I'm giving everyone fair warning. I'm about to talk about some gross shit. As opposed to not gross shit I guess. Whatever.

It's been a month since I've written. The one fabulous thing I did was get LASIK!! OMG! So freakin' great. My eyes weren't bad to begin with but to me they were. I was about 20/40 and -2.50 in contacts. My last checkup was 20/10!!! It is unreal to wake up and be able to see, and shower and not be blind or me to think I'm going to get some bacterial infection every time I would shower with contacts in. Yes, I know, but it happens. So now I can SEE!! I have a part of my body that isn't failing and causing me issues. I don't even know what to do about it. Wow. And daughter #2 broke my glasses the day after surgery. And I didn't even care!! =)

*** Grossness beginning***

So aside from my spectacular vision,  I have had the usual nonsense with living with a temporary ileostomy. Trying to figure out how to slow my output so it's not nasty water pouring out of me but not so thick that it'll cause issues. Yeah, I haven't found the right fix yet unless you count eating potato chips everyday. No kidding. The lomotil I have as a Rx doesn't quite do it. The Imodium is a joke. But if I eat chips everyday I am the closest thing to comfortable as I can get. Sleeping with an ostomy bag full of liquid is impossible. It sloshes around. It weighs 2lbs. No joke. It is truly disgusting and you are aware of it for every single second you are trying to "relax" and get some sleep. It doesn't go together well, hence I'm a #tiredhag.
Traveling with an ostomy is a nightmare for me. We went away for spring break for a week and I have to plan and think about so many things with an ostomy. I have yet to find wafers that don't blow and leak constantly so needing to travel and carry with me enough supplies by guessing what I could possibly need is a lot. You can't get anything at a drugstore. So I get paranoid and half a suitcase is ostomy supplies. I came close to not having enough this time. I started to panic over the weekend and came up with a plan to contact an ostomy nurse at a hospital in town. It would have been my only option in a pinch.

My ostomy was at the forefront of my mind every minute I was away. At the beach(especially), while we spent the day at a theme park, when we went to dinner at my parent's friend's house. Dealing with an ostomy incident away from my house makes me crazy. It makes me neurotic and upset and just so AWARE that I have issues. I love the beach. I could park my ass in the sand for 5 days straight and be fine. It's not the same dealing with this. It's hard to handle a wafer blowout in the sand. My enjoyment level is down. I feel restricted in my life. I know so many of my IBDer friends have permanent ostomies that they chose, or in some cases, had no choice. And I commend them for their day to day. I am amazed by those that scuba dive, run marathons, go camping etc... I can't picture myself doing any of that. Not in my condition. Not with the skin issues I have, the wafer issues I have and the output I have. Some days I'm afraid to run to the store because my wafers have been leaking nonstop.
So vacation was fun. I LOVE going away but at the same time felt the impact of what I have going on with an ostomy. We went to Universal and I had an explosion before we got into the park. That doesn't set my confidence level very high for the day. I hate that. But I enjoyed Butter Beer in the World of Harry Potter. ;)

So we get to the last few days. My rectal spasms are back and are so uncomfortable. They bring me to tears and it takes A LOT of pain to bring me to tears. I've built up a pretty high tolerance for pain over the years. My skin is raw. It's weeping, it's bleeding. My output is water. (Keep in mind "they" say a good output is mush like oatmeal. Yeah, right. Maybe about an hour every few days if I eat chips consistantly.) So I've been going through wafers like crazy. I try to hold off changing them very soon even if I know I have fluid that has leaked under and is eating my skin. The tradeoff is my skin getting eaten off in one small spot, or my skin getting ripped off from the wax in a larger area.(The wafer is wax and it melts onto your skin to seal it. They are meant to stay on easily up to 5 days so getting one off after a few hours is horrible.) It all sounds so fun doesn't it?? Wooooo-friggon-Hooooo!
All of these supplies are VERY expensive so making them last is important. I spend way too much money on all these supplies. So sometimes I suffer through the pain of a leaking wafer just to get another day out of it. I know that sounds nuts but I've become so accustomed to some sort of pain or discomfort that it isn't a big deal anymore.
Well today was just the suck of the suck. Burning skin. Spasms. Water output nonstop. Those things and changing a wafer DO NOT MIX. On a good day, once I get the old wafer off I can get cleaned, prepped and a new wafer on in 60 seconds. On a day like today I have no chance against the power of the small intestine's peristalsis. It won't stop. And with it being all liquid it makes it impossible to get the area dry before putting the new wafer on. So tonight with my skin burning so bad I couldn't take anymore, I managed to peel the wafer off, taking some skin with it. Here's a nice visual.

 So my skin's bleeding. I'm trying to get everything ready with one hand and deal with my skin with the other. Well, then the explosions started. I am not kidding when I say the force of the smooth muscle in your guts is insane. You will never see it unless you are *lucky* enough to have part of it sticking out of your abdomen. Mind you, you can't feel it doing it. It's creepy. There are no nerve endings. So I don't know its leaking until it hits skin or I see it. Tonight I was lucky enough to have that pain in the ass spray 2 feet across the bathroom. More than once. Absolutely amazing and completely disgusting at the same time. There is nothing to do to stop it. It was everywhere. Like a gross horror movie.
So after showering, barely getting the new wafer on before it sprayed again, I had to bleach the bathroom. I'm living the dream. Some days, like today, it is so apparent that this is my life.
 I will never NOT have issues. I know that sounds so negative but even getting reversed to my JPouch will not be fool proof. If it was I wouldn't have this ostomy again. It's a crap shoot, so to speak, and some days it feels like I have a short term issue and I'm just waiting for it to resolve itself. But the truth is, I have an autoimmune disease, I'm missing a major organ that you need to live well and be healthy. NOTHING will replace my colon or do it's job. And most people don't realize how important digestion is to their health. They don't know the impact of IBD. I know I've said in the past but, I've had people ask me very confused HOW I was anemic. Shitting blood in ridiculous amounts for months straight isn't something that occurs to people and even if it did they don't really get how much damage it causes.

But to all my healthy readers, how horrible do you feel from one night of diarrhea? From a week of the flu? Run down. Weak. Fatigued. Hurting internally. Imagine that every day of your life. With blood. With abdominal pain that sears through you like a hot poker. It's devastating. It's debilitating. It can be embarrassing. I'm generally a pretty confident person, but I will say my ostomy reduces that. My weak, fatigued body reduces that. My poor body image from weight fluctuations reduces that. And for me that is huge. SO when I have to fight with an ostomy, and have it halt my life the way it can, I know pushing to get reversed is what I need. I can be in pain anywhere. I can deal with that. I've done it. When an ileostomy wafer blows, and you have a mess and you are in the car, in the mall, at the beach, in a plane, that's what is halting and what is beyond my scope of handling.

I've been dreaming of my reversal. I'm so miserable like this. Hoping to get scoped in April. If it looks good, I want my reversal as soon as my finals are done. I'll leave school and drive to the O.R.
Sorry for my long windedness. Sorry for being Josie Grossie. I guess sometimes I glaze over the reality and how much it can suck and I just needed to put this out there. I smile and live my life and TRY not to let this whole mess of my life hold me back. I think I do pretty well, but tonight just hit me too hard. When you have a moment when you are alone and feel humiliated to yourself, you know that's something big.
Live well everyone. Be well. Love your guts and don't take your health for granted. Don't take having nothing hindering you for granted. Thanks for reading. XO.

Tuesday, February 11, 2014

"Perseverance, secret of all triumphs."

Hey everyone,
I wanted to write within a month of the last one but, well, honestly it's the same shit. I'M TIRED of hearing it so it seemed ridiculous for me to put it out into the universe. But hey, here I am. Since I last wrote my skin has gotten worse. I'm blowing wafers left and right and they aren't cheap. I'm talking a box of 10 over a weekend and wafers are made to last upwards of a week. I've requested some new products and hoping they work better. Something is off this time where the right wafers are NOT working with my body this time. I know after so many weight fluctuations and surgeries, my abdominal landscape is very deformed. Nothing is flat. So my wafers aren't sealing properly. It blows. I have what feels like the worst sunburn you can imagine, then will adhesive and wax that bonds to the skin that you continually have to tear off sometimes multiple times a day. And it itches. I want to tear into it but I can't. I won't post a pic because it is just awful. It makes a person extremely assholey to be that uncomfortable all the time, 24/7. Yes, no typo. Assholey.
So because of the assholey feeling I'm stuck in, I didn't want to write. I want to hide. Well, I don't truly but I do because of this crap.
My classes started. I'm taking 2 on campus and one online. I feel overextended most days. I could sleep til noon everyday. I sleep like shit. I look like shit. I'm run down and listless. Walking up the stairs hurts. From the amount of output from my ostomy, and the consistency, food is blowing through me and I'm probably absorbing nothing. I've had labs and they all show electrolytes are god but I don't feel right. I don't feel healthy. Aside from skin issues, that's my main issue. If I had energy and slept well the skin issues wouldn't impact me the way they do. I'll take my Jpouch over this. That's saying something because if you've been reading, I was really having issues with my colitis. But they way I see it now, my body HATES ostomies. My skin hates them. My ostomy is like a turtle head. It recesses back into my body and with that, behind the wafer hence mucho leakage and mucho acid eating at my skin. So because I'm a jackass, if I'm going to have discomfort, I want my vanity. I want convenience. I want my JPouch. Yes. I said vanity. I have little for the most part which is evident in me voluntarily getting an ostomy. I will bet 99% off people would not take that route for vanity. But whatever. I did because sometimes I can be a bad ass bitch and I bit the bullet. Well, surgeon says it looks like I'm healing well internally. He'll knock me out and scope me in 2 months and figure out my reversal back to JPouch. Another week in the hospital. Another chance of ileus. Can't wait.
But I'll do it and hopefully PREVENTING the inflammation will prove to be a better option from trying to get rid of it. Because that didn't work. AT ALL. Hence my situation.
I'm thankful for my husband that puts up with all this nonsense from me. I love him. I'm lucky I have him in my life. I'm sure many days he wants to slap the bitchiness right out of me. Many days. MANY.
So patiently waiting for new supplies. I will update on if they work, and hopefully they will. We are going away in March and I'd like to travel somewhat comfortably and not have the trip ruined by blowing ostomy wafers. Springing a leak and having to change in an airplane bathroom sounds like the least fun thing to do on vacation. Nah, I can think of a few more but regardless no fun for Lisa.
Ok everyone, it's time to go lights out. I have an early class that goes long and mornings and me are not besties.
Hope everyone is staying warm. This winter is just dragging. XO

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Monday, December 30, 2013

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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