Thursday, May 31, 2012

Untitled and undefined

I'm leaving this post untitled because there isn't anything specific I feel today or want to convey. I saw my surgeon Tuesday and he was really pleased with my incision healing and my output and how I'm handling the bag. I get my staples out next week and can start to increase my diet as tolerated so that's all great news. The staples are starting to itch like mad and it's taking all my willpower not to claw the crap out of them. And they are ugly. The area all around the incision is completely numb. So from below the belly button to about the pelvic bone, nothing. So weird. I keep tapping on it because it's the weirdest sensation. You C section girls might understand. I never had one but I can only think this is close.

My home nurse came yesterday to teach me how to change my bag. She was wonderful. Very nice and lives in our neighborhood so she said if anything happens in the middle of the night just call and she can be here in a minute!
 It was the first time I saw my entire belly uncovered, and without the bag over the stoma. I took one look and cried. I have staples to my belly button. The stoma is a round, bulging red area. It looks like a ball of raw steak sticking out. And when I saw it I thought, 'Man, I could really go for a nice filet right now!' I think I've lost my shit. Who thinks that? It must be the muscle relaxers! Ha.
 It was quite shocking seeing it all. I almost took a picture but was too upset. Maybe next time.
The good news is I got a new bag. One that sits really close to my body. The last one had this extender in it to give room to this tube that sits through the stoma as it heals to keep it popped out of my body. The extender made the bag stick out and felt so awkward. I was doubting I could do this until the reversal surgery. Now that the 'regular' bag is on, you can't even see it. Here's proof----->


My bag is on my side closest to the mirror. Not too bad. I can live with that for a few months.

Here's the original all bugging out on the day I got discharged----->


What a freakin nightmare. So needless to say, things in that area have definitely improved. It's going to be an interesting few months dealing with this until surgery #2. Surgery #2 will reverse the stoma, and hook up the J Pouch and I won't need the bag anymore. Apparently, the stoma scar looks very similar to a bullet wound scar so I'll have to come up with a really great story. =)

It's been a long road this week. Well, the last 3+ years have been all over the place. I've been 98 pounds out of the hospital and too weak to lift my leg to step up onto the curb. I've been so weak that I've laid in bed while Hubs fed me jello. Where I couldn't stand up without the black tunnel closing in and I knew I would pass out. I've been pregnant. Those 39 weeks were the BEST I felt in 3+ years. I felt so amazing.  I lost my baby weight FAST and then went into a terrible flare that put me on 70 mg of Prednisone daily.  I gained about 40 pounds from that. Isn't that a kick in the ass? Drop all the baby weight (seriously in like 5 weeks) only to put on MORE than that from dumb meds. My face blew up big and round and made me so self conscious I didn't want pictures with my new, beautiful baby.
This is what evil Prednisone does to my face---->

Bloated, puffy, nasty moonface. So horrible. I won't go into the night sweats, insomnia, raging appetite,  horrible skin, hair loss..... The side effects are ridiculous and I think I got every single one!!!

For comparison, my face 9 months preggo when it SHOULD be fat! --->


This was two days before I had VIP. Prednisone made me gain more weight than a fetus did!!! WTF?!

I realize I started this blog in the middle of my journey, so I'll be doing some 'flashback' entries in order to tell the story properly. It's hard to recall timeframes and everything as so many things seem to run together through all this.
Missing Daughter #1's last day of school party today because I'm just too weak and still in a bit of pain to go. All the kiddos I know will run up and hug me and I don't want to be dismissive but I can't let them crash into my stapled abdomen either. I'm a bit sad.... but happy that starting tomorrow we have no schedule to adhere to! Wel, except my never ending doctor appointments. Hopefully, after surgery part 2 that aspect of my life will be over...

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Monday, May 28, 2012

Rock out with my ostomy out.

Hello, hello. I got home yesterday from the hospital and it is so nice to be home. Now that I'm more comfortable and a tad more lucid I am going to give you the run down of my week more than I could in the last post.
Monday finally came after a slow moving weekend and a LOOONNGG day of prep on Sunday. Monday I didn't have to be to the hospital until 1030a and I was just ITCHING to get moving after driving my daughter to school at 745a.
Fast forward to the hospital--- typical fluids and blood draw etc.. but then they put me in this gown that they blow warm into... because apparently the body being warm promotes healing. Shivering takes energy away from healing. Here's the crazy inflated gown.

Oh, how nice was it that I unknowingly matched my pedicure to the puffy gown-->


Nice right!!?? Ha. So at about 1pm I meet the anesthesiologist. He gives me some diluadid and some valium. Apparently the valium is to reduce muscle spasms and I would be getting more later. Mat told me we were around talking for a bit after the valium. I remember nothing. I don't remember saying goodbye or anything. This is the last thing I recall ---->


I am truly a light weight. My surgery took about 3.5 hours. My incision is bigger than planned because my surgeon got in there to look around and make sure he didn't see Crohn's anywhere. That's why I chose the version of the surgery I did instead of the full laproscopic that almost has zero scarring. I wanted him to look at it, not just through the camera. 
I vaguely remember waking up in my room. I distinctly remember the pain. I can not describe it. I was about 80% out of it, but some things break through. My husband said when they were moving me from the gurney to the bed I was making what he described as 'whale sounds' in response to the pain. It wasn't human.  I don't remember much else, but I do remember this because I didn't like the first one so I made him retake it so I was waving. I'm a weirdo. This was shortly after getting into my room. Maybe 90 minutes after surgery ended.--->

I don't remember much about that night luckily. The next day was not so hot either. A lot of pain. Long day. There were not enough pain meds on Tuesday. OMG. Plus, I had a total asshole RN who works a different department who was filling in. He basically was implying I didn't need the amount of pain meds I was asking for and that I was just, ya know, trying to get high one day after major surgery. Needless to say, he was dealt with. I had a LONG chat with the nurse manager. You don't mess with me on a good day, much less a day after I had an organ removed. 
This was the best thing about being in the hospital---->

The personal pain med button. That little blue button delivered magic via IV. I didn't have to call and wait. It was great. The first few days were tough. When you are in pain you breath really shallow which could end up causing pneumonia because your lungs are not expanded all the way. And given my history this spring of having had it, I had to meet with a respiratory therapist twice a day and do breathing exercises that sucked really bad. Holy shit. Taking a deep breath into this spirometer thing made me want to cry. It's unreal how you don't notice what you use your abdominal area for until it's hurting. I started walking and just forcing myself to take deep breaths because the thought of going through all that and then getting stuck in the hospital even longer for pneumonia was too much to handle. I fought through it. I would just put pressure on my wounds and breathe in so that they were kinda held in place. Same thing with coughing, sneezing etc. It's as if I had to hold myself together. Within 2 days I passed their tests and they were just testing my O2 level in my blood. I was 100% so they were happy. After surgery it was only 80%. 

Okay, wanna see my guts? Ok, good. Here they are. 
Totally rotten and diseased. I am so glad they are gone. I am so glad they are no longer sucking the life out of me anymore. They should be pink. They are yellow because they are sick, and infected. They are scarred and mishappen because of years of ulcers and disease. Many people with UC fight to keep their intestines. I will never understand it. As hard as this last week was, it was easier than one or two days of really bad flares. This was a long time coming. I have a long road ahead but it can only get better. 

About Day 4 I was feeling this ----->

Day 5 ---> Loony


Very long week. Today I had my first visit with my home health nurse who will help me deal with my new ostomy and make sure I'm healing ok in between doctor's appointments. I won't be driving for a while. Or swimming. Or eating anything yummy. But I'm fine with that....That's temporary. Tomorrow's a new day...hopefully a little less pain. Still trying to deal with the physical element of it all. It's not pretty. A large vertical incision, the stoma. Emotionally, I'm still coming to terms with it. It's very hard for me to look at. 
I go see my surgeon tomorrow. We'll see what kind of good stuff he has for me. 
Good night everyone. Thanks for reading. XO

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Saturday, May 26, 2012

No guts- lots of glory

Hello from hospital land. It has been quite a week. Sorry I haven't updated. Today has been the first day I feel together enough and energetic enough to write. I am going to do a full post with pics and stuff but I just wanted to check in on my phone. I am feeling pretty amazing considering they opened me up, moved stuff around, took 5 feet of guts out and then stapled me back together.  I already feel different even with the recovery pain. I can't explain it. I feel less heavy, younger. It is so great. I'll give the weekly play by play later from my laptop. It has been the hardest few days of my life in a few ways. Physical pain, emotional pain and mental toughness. This was no joke. I've been pretty miserable but in a funny, sarcastic way, if that's possible.
Here's a pic from last night with Hubs and Daughter #2. It's so hard being away from home like this.



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Sunday, May 20, 2012

Luck be a lady...

Well, tomorrow is the day. I can easily say that my nerves are definitely kicking in now. I am overwhelmed by what I'm about to go through to the point I might cry. I'm no where close to leaning toward changing my mind but wow, all the emotions are hitting me. I've got my hospital bag packed and Violet's stuff is together to bring her to a friend's in the morning.
I don't have much to say. I'm basically in quiet reflection. It's not even so much the major surgery, as the knowledge that my life will change very shortly. As miserable as it is, I'm used to it...and now I have to readjust and get used to something else. In 24 hours from now I will be in recovery, and will wake up. My new reality for a few months will be with an ostomy and I can't predict how I will feel once I have it. I can't predict if people will judge me or treat me differently. I can't predict how my body image will change or how it will impact my self esteem. Those things scare me. When Daughter #1 sees me I'll be different and I hope it doesn't make her nervous. When Hubs sees me I'll be like FrankenLisa and I hope he doesn't think it's gross. I don't know. So many things going on in my head. I'm going to end now. Next post will be post OP. Yikes. Wish me luck.

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Saturday, May 19, 2012

The last supper(and dessert)

Good evening and Happy World IBD Day!!! Today was tough. Really tough. Again, slept like crap, the pain waking me up a million times. Felt pretty good in the morning despite severe cramping. Funny how I'm so used to pain I can have a good morning while my pain level is about an 8. How life changes.
Any-who, grabbed some Panera bagels with Daughter #1 and came home to put some laundry away and do some cleaning. I would just like to say, whoever builds a house and decides to put carpet on the stairs is officially a moron.... vacuuming stairs is ALMOST a bigger pain in the arse as my UC. Seriously, there is no easy way to do it. The easiest way is to let someone else do it. Hahaa...I'm hilarious.
So I cleaned and played Monopoly with Daughter #1(she killed me). About 3pm the telltale signs of a fever hit me out of no where. My joints started to ache, head pounding. The second my temp hits 99 I feel it everywhere. Did I mention my Take Steps walk for the CCFA was today at 6pm? Yes, so this fever was seriously pissing me off. Like why can't I get a break. I wanted to cry. I can't plan ONE thing. I haven't been able to in over three years. I couldn't plan a wedding because what if I ended up back in the hospital? I had exactly what I wanted in my head, and this effing disease made it impossible.
Needless to say, I got ready and went to the walk with the Hubs and the kiddos. Here is me, with the kids----->


At this point I was definitely achey, but happy to be in the sunshine and walk since so many wonderful people sponsored us and donated money. Well, I made it about a mile before the pain hit. Horrible. Here's a funny(not funny) thing- It was a walk to raise money for people with IBD- so you know there were people walking who basically live in their shitters. There was not ONE porta-potty on the whole route...Who the hell needs to be fired for that crap!? Seriously- So anyway we looped to go back because I was dying. I seriously was thinking I was going to have to rough it and visit a tree. Luckily, I made it to modern plumbing and guzzled some Pepto. I was cramped and in pain the ride home.
Luckily, at home, I have pain killers. Wonderful opiates that make nights like this livable.
So I managed a few fork fulls of delicious Pad Thai, in between jaunts to the john. One wonderful thing is Daughter #2 LOVES Pad Thai. My work here is done!!
Needless to say I am pretty stoned right now, but the pain is gone. I'm lucky I can type but I have bigger fish to fry. I needed dessert... Chocolate Ice Cream with Oreos crumbled up. Mmmmmm....
Pic!!! ----------->



Oh my was it fan-freaking-tastic. Why was I eating so much when I was obviously in so much pain, you may ask?? Great question. Answer- tomorrow I am on clear liquids only and bowel clearing prep. I will stop all intake including water at midnight Sunday. I probably won't get to have a drink until after 630pm Monday night in recovery. 
After surgery Monday my diet will be pretty limited. Starting with liquids and building up like what you do with a baby. So, it may be a while before I can sit and have a proper delicious meal. I love food- this disease has been the biggest kick in the ass. 
Okay- That's about all I will bore you with tonight. One day. One day. That's all I have to get through and hopefully I can have my life back. Being able to go somewhere and not be in pain or have to seriously sprint to a toilet will be amazing. I know that sounds funny, but it's quite horrifying. It's like food poisoning everyday of my life, with chronic pain and fatigue. 
Thanks for reading. 

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Friday, May 18, 2012

Good Friday

Howdy Ho Buckaroos... The weekend is here!!! Most of you are hoping it drags by and Monday never comes, but I'm sorry but I may screw your plans because I'm all about Monday!!! Today was actually a great day. My pain was pretty sporadic and I made it through lunch with only one interruption.
I slept like shit because of the pain so 8am came early when Daughter #1's dad dropped her off. I swear I was so tired I couldn't put a sentence together. I get that foggy tired that is VERY close to the hangover fog. I hate it because it's the hangover without the balls to wall fun of the night before. VERY, VERY lame.
So Daughter #1 BEGGED me to go down to the pool this morning. Ugh. I knew it would be pointless because although it's been really warm, our nights are still in the 70s and there's no way the pool was warm enough. I sucked it up b/c I'm going to be hesitant to swim with my ostomy at first, and will probably be insecure about it.
I busted out the swimsuits..mind you I am basically albino. I decided to take a pic of myself to remember my unscarred belly that I generally loathe. In a few days I will miss it. I also took a pic because I wish I had documented my weight fluctuation over the course of my disease. In the last 3+ years I've gone from 98lbs to 39 weeks pregnant. It's been quite the journey. Couple that with some massive weight gain from steroids, I'm surprised my body isn't completely morphed.
Well, here's my pic... I can not believe I'm posting this. I truly have no shame left. ;-)

Yes- I need some color. The sad part is this is AFTER a few applications of that lotion that gradually makes you more tan and an application of straight self tanner. I think I need more blood! Hee hee.
The pool was a fail. Water too cold. Fortunately, Daughter #1 and I met some friends for lunch nearby and I enjoyed some mexican food and got a little sun chatting with a great friend who I can be brutally honest with and listens. She's wonderful. I'm grateful I met her out here. Relocating in your 30s can be really tough. Add that to being sick, not working and it proves VERY difficult to meet people.
So, I'm currently home hanging out, doing some mental prep for the next few days. I'm more concerned about the stupid bowel prep I need to do Sunday than the surgery. I'm so weird.
Tomorrow is World IBD(Inflammatory Bowel Disease) Day. My family and I are walking for the CCFA to raise money for awareness and to facilitate more research for a cure. I hope I can make it. No, I WILL make it. For me, and for everyone, especially the younger people and little kids that struggle. They are stronger than I am in more ways than one.
 The blood I got definitely gave me an energy boost, but I can't deny the fatigue from my crappy sleep patterns. We'll see what happens tomorrow. I promised Daughter #1 we can go to 5 Guys for burgers which is fine by me because I am all about eating off limit foods this week. Still deciding on my last supper. I think 5 Guys may be a good way to go out!!
have a great night.... I'm off to pull some stuff for my hospital bag. Yippee!!!

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Thursday, May 17, 2012

And it only took 6.5 hours...

My transfusion took FOREVER. They finally started the vamp juice at 9am and the second bag finished at 330pm. Holy crap. I got there at 8am.
Ok, I'm not really sure if I look more alive after two units of blood of not. I can't tell. This is before-->



This is after ------>


The lighting is totally different so who knows. My bangs definitely got jacked up from them checking my temp all day. Don't the nurses know bangs are very high maintenance? WTF!? =)

I came home and put a nice Muppett bandaid on my wound and within an hour developed a fever. OF COURSE I DID. ARRGGHHH...... so I wallowed in some fries and gravy which I will be certain to regret in a few hours. Everyone with normal guts- don't take it for granted. Enjoy your fast food, red meat, beer and whatever other garbage that is ridiculously hard for your body to process. You don't feel how hard your guts work to deal with it. I do and it's not fun. Never take your health for granted. Don't put off that run, or that trip because there are endless tomorrows. You just don't know. My life has been upside down for 3 and a half years and I kick myself for all the things I put off thinking I would be healthy forever. Sometimes you just don't know. =(

Tomorrow I am hopefully going to be able to hold it together enough to take Daughter #1 out with a friend and her mom. I had to cancel dinner plans tonight and was bummed. I have 2 days left before I'm out of commission for a bit. Let's hope these rotten guts cooperate.  Night nights, everyone. This broad is checking out. =P

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