Shop 'til you drop

Yesterday I went to Old Navy with my mom and shopped. It was fabulous.

I had a $25 gift card from Christmas that I desperately wanted to spend. Although I was capable of browsing the store for as long as I wanted, I pretty much had everything I wanted to try on in my hands within 5 minutes. I ended up buying a cute floral print dress. I always buy nice clothes that I never end up wearing. In reality, I end up throwing on Jeans and a tshirt every day. I always thought this was just my style but now that I think about it, it probably does have a lot to do with being sick.

Anywho, the significance of this whole shopping excursion was that I enjoyed it. Before Christmas I could barely last ten minutes in a store. If I did purchase something I did so without trying it on (hence my gift card from returned merch) and I never really got to enjoy the concept of "retail therapy". It was nice to get out of my car, walk to the store, walk through the store, try on clothes, stand in line, and return to my car all without incident. Pre-surgery these tasks were almost always completed uncomfortably, or ending with me throwing something at my sister and telling her to stand in line while I waited in the car. Actually, if I think about it, that's pretty much what happened EVERYWHERE. My sister can attest to the fact that our routine anywhere we went usually ended in me walking back to the car and sitting by myself until everyone was done what they needed to do.

So finally. Even though I couldn't completely stand upright with the greatest posture, I survived my first shopping trip. I anticipate there will be plenty more to come and I will enjoy them all the same.

Tomorrow I get to spend the whole day with my nephew. I'll be singing him lots of songs, dancing like a maniac, and kissing his cute face. I'm not supposed to pick him up for two more weeks. But, I'll let you speculate as to wether or not I've broken that rule yet...

Oops.

Boredom: The sign you're feeling better

So here I am. 10 o'clock at night. BORED!

Unfortunately I haven't been in the mood to read. Last year I would devour books but I just haven't felt like reading lately.

I'm still not one hundred percent mobile. I get short of breath if I walk too fast and feel fatigued after small tasks. When I wake up in the morning my body aches and my midline incision is still sore. Sometimes I pop a percoset or a half tablet.

I was told by my surgeon that I'm allowed to drive again when I feel like my incisions have healed to a point where they wouldn't impair my reaction time in a crucial road situation. I am not sure I am there yet. I will admit I cheated last week. Once. I wanted to go see my nephew and there was no one to drive me there so I got in my car and drove the 2 mile drive to my sisters. Oh, and before that, I had to clear snow off my car and de-ice it. Hey, there's little that will stand in the way of an aunt and her nephew! Really I shouldn't be driving until I am 100% because I drive stick, which means you can't just lazily sit in your seat. You really gotta be on point and mobile.

I've already blown through seasons one of Modern Family and How I Met Your Mother. I've even tried getting into other sitcoms available on ON DEMAND just to have something to watch. I'm BORED, people! Give me something to do. I feel like the more I lay in bed, the more it just becomes a cycle of me sleeping 12 hours. I don't NEED to sleep that long. There's just nothing else to do. Anyone need me to plan a birthday party? Wedding? Come up with a life plan?

So this is what life is like when I'm healthy, but not yet completely ready to take on the world. But I guess I just gotta be content with boredom. Beats feeling like shit, right?

Also, one of my best friends who lives in England sent me Cadbury Caramel Nibbles. I suggest you find them immediately. I don't know how available they are here but I will now be on a quest to find them.

For your viewing pleasure, because my sister says there's not enough Braden on here:


His one-sie that day had a Monkey on it and said, "I like hanging with my Aunt". Oh man, melts my heart every time!

Hospital Outtakes

Today in the shower I randomly remembered the last few minutes before surgery when I was high off my rocker.

Now I've been under anesthesia many times. Sometimes I don't remember shit before falling off to sleep. Once I remember the doctors and nurses telling me to count backwards from 10. When I got to zero, they said, "Uhh. Count again." and I don't remember much after that. Other times they knock you out before you even get to the room they're going to use to torture you. I've found that the anesthesiologists generally try to have a conversation with you about random topics; what you do for a living or which one of your family members is waiting for you. They also LOVE to bragabout how "happy hour is about to start" or they'll make a lame joke, "Be nice to me. I'm the one with the drugs" It's all in an attempt to keep you talking so they can definitively tell when you're out of it when, say, you trail off to sleep mid-sentence.

Ok, so I was in the shower today and I remembered what the anesthesiologist was talking to me about before surgery. All of the nurses or whomever is in the room at that point, kept asking me about my "happy place". Yes. They actually used that phrase.

Now, to me, telling someone my "happy place" makes me want to laugh because its just...corny. So the first thing I thought of wastelling them my happy place was at home on my couch watching TV. Apparently this wasn't good enough for them as they insisted my happy place had to be a beach. So I started telling them my happy place was a beach in Florida that I had just visited for the first time this year. They were asking me more questions like the name of the beach and where in Florida it was located and I remember being extremely vague and the more vague I was, the more they prodded me for details.

In the end, I guess they got what they wanted. I ended up telling them about my trip to Clearwater by myself this past year and how I took a ferry out to Caladesi Island. I told them how the beach was ranked the #1 beach in the US in 2008 and that I sat under an umbrella all day reading a book. For some reason the whole time I felt so foolish telling this story, probably because of their ridiculous oohing and aahing. Then I don't remember anything. But why couldn't they just let me tell them about how wonderful my couch is? I could definitely talk longer about my couch.

I don't know why I'm telling this story but I figured it was the best way to share some of these pictures from the hospital. They aren't glamorous nor that amusing.

This is what you might look like an hour after a proctocolectomy:

Finally in my room, I think I was just high here. Hence not appearing to be in a deep sleep yet having my eyes closed. The girl who came by my room every morning to draw my blood always laughed because I was burrowed into that corner of the bed the every time.

And this one. Oh my...I don't know if I was screwing around with my mom or actually THAT out of it but it's hilarious either way.

Updates on my exciting life, three weeks later.

I didn't think it was possible for there to be more reflection on my life post-surgery than there was before. Before, I was trying to justify this surgery to myself, family, and friends. I talked about all the ways my life would be improved. I read blogs, message boards, and then re-read them all. I thought about my life these past two years. I knew my life would become better. But at the time I was so terribly wrapped up in my illness that I couldn't actually allow myself to mentally go there.

And now, I am beginning to imagine how life is going to be. I am finishing my graduate school applications. I am not worried about the future. I am just excited. I am very close with my family and I've had a lot of discussions with them about how it feels to finally have this disease removed from my body after eight years. And I just tell them it feels great. The most descriptive I can get is that I am completely free of stress. Before this, my life was a ball of anxiety. Now I go to bed every night knowing I will wake up in clean, dry sheets. I can spend a whole day in the same sweatpants. The other day I went ten hours without going to the bathroom. The simple things in life are pretty damn amazing.

On Thursday, I went back to Maryland for my post-op. The night before my drain had broken free from my stitches and came out on its own so I didn't need that removed. I had my stitches removed from my bum (yes, they stitch your butt closed) and everything is progressing wonderfully. Before my appointment one of the nurses, whom I have known since 2004 came in the room to see me and ask how everything was. She was telling me about another woman my age who just had surgery and it was "the best decision she ever made". I never imagined that I could be one of those people who saw an ostomy in the same way...

Life is so wonderful I find myself thinking and crying tiny tears of joy. Yes. ME. Ellen. Crying. I think I also cry because I can finally give myself a pat on the back for being so strong. I guess I'm pretty brave, huh?

Two Weeks Later...

Well it's been two weeks since surgery and things are going okay. I'm sleeping A LOT. It's nice to have uninterrupted sleep the past few days now that I'm not on pain meds all the time. My sleep schedule is still wacky because I don't really have any responsibilities but it's nice to just lay in bed and not have your bowels telling you to wake up.

I've been having a few issues with my ostomy itself but that's probably from losing a little bit of weight. Anytime there's a fluctuation with your size, it affects your stoma a lot. Before surgery I had finally gotten to a point where I was never having leaks or needing to change my appliance a lot because I just knew my stoma. I know it'll just take some more time before things settle down again and I have it under control. But I'd like to stress these minor hiccups are preferable to anything Crohn's-related.

Otherwise my stoma is the same and my surgeon didn't even have to change anything about it. I kind of wish she did, though. From my understanding she folded the part of my intestine behind my stoma so that instead of being a "loop ileostomy" mine is now an "end ileostomy". You know how before surgery I was having problems with my output bypassing my stoma? Well, now there's no pipes left for it to travel down so everything is forced out of my stoma for lack of an alternative route.

My wounds are healing nicely and I don't really have any pain anymore. The most troublesome and irritating thing right now is dealing with the drain I still have. There's stitches around the part where the drain meets my skin, so naturally it is a little bit uncomfortable when I sit on it. Also, just the whole part of needing to carry this damn drain around every where I go is still very annoying. Every once in a while I let it fall to the ground and it pulls on the stitches and hurts. Luckily the drainage has slowed down significantly so I should definitely have it removed when I see the surgeon on Thursday. Hopefully I'll be cleared to drive then, too!

All in all everything has been how I expected. There's been some rough moments I will admit. Honestly I think a lot of it has to do with pain meds. There were a few nights where I was just emotional because everyone in the house would be asleep and I was just...uncomfortable. Nothing a little time with my mom didn't help.

I've also been thinking a lot about the emotional adjustment of knowing you're going to live with an ostomy forever. When I was in the hospital my GI came to see me and wanted someone to come talk to me. A social worker or therapist or something...And I just wanted to explain how not everyone is a wreck after this. I've been emotionally preparing for a year and for me, the tears and "why me" are way behind. I don't know. It's a whole other topic for another time.

In short, I'm doing great. I have my days. I'm tired a lot. But you know what? Every day is getting easier. I'm excited.

Home and Resting

I've been home since Sunday and it feels great. There's nothing like a week in the hospital to make you appreciate how great sleeping in your own bed is and marching to the beat of your own drum. No more 6 am wake ups by doctors and phlebotomists' searching for a good vein to draw blood while I'm half asleep. Now it's back to fighting with my cat every morning while he insists on marching across my stomach until he finds the right spot to lay.

The physical adjustment hasn't been so hard. It's pretty much what I expected from my other surgeries when I had a big incision. My surgeon used only half of my previous abdominal scar to open me up so I guess my pain should actually be less. I also have two new tiny spots where she put a laproscopic-like camera in there. Those don't hurt much at all. I do have a lot of pain on my right side where my stoma is. I think that area of my intestines is inflamed a bit from the surgery even though my surgeon actually didn't need to adjust the stoma itself at all. How she did this is still confusing to me. The whole damn thing is confusing to be honest.

A lot of people, after surgeries or doctors appointments, seem to say "my doctor said it's the worst case he'd ever seen" or something along those lines. So I won't even go there about my surgeons impressions of my insides once she got in there. Of course she did say my colon was very much inflamed and I had multiple fistulas in my rectum, which we already knew. A couple of interesting things were that she didn't even think I had much of my colon left. Even though I only had half of it removed back in '04, she said sometimes your colon can actually shrink from inflammation and scar tissue. Weird, huh? Also, there was an area of my small bowel that adhered to my large. She didn't think it was a fistula (which was a concern of my dr's that was ruled out through multiple imaging tests) but said that it couldn't be ruled out 100%.

Otherwise, my appetite has improved a lot since I've been home, too. I still get full easily but I'm eating and enjoying it. I really don't have any dietary restrictions but I am still hesitant about eating vegetables and other things that aggravated me before surgery. Honestly the most annoying thing right now is that I have a drain coming from my butt that I'll have until next week. My surgeon decided, because of my terrible rectal inflammation, that the safe thing to do would be to leave the drain in for a few weeks to make sure nothing became infected. So I've got this long tube that drains into a grenade-looking plastic container and I've got to drag it around with me everywhere I go. If I don't hold it when I'm walking then it pulls on the stitches in my bottom and hurts just a bit. So I'm not completely free yet but I am getting there.

That's all my news for now. I've been spending the days with my mom and nephew, whom I can't pick up for 4 weeks :( I am just trying to relax as much as possible so I can be back to my old activities in no time. Life has been pretty boring these past five days, and that's just how I like it.

Going Home

Welp, I survived since my last post. I forget which night it was, maybe Tues or Wed but I had a minor setback when I started throwing up and having incredible stomach pain. At that point I had been eating small bites that day and drinking but there was no indication that things were moving along. It must have been the intensity of my night time vomit session because bam! Right after that my bowels got moving at the pain subsided. And man, there was a lot of movement.

Unfortunately that night put us back as far as advancing my diet so I went back to liquids only. It was very hard the next day because I hadn't slept the night I was throwing up and they also kept giving me anti-nausea medicine which makes me very very sleepy. So I couldn't get out of bed and pretty much slept all day.

The next couple of days we gradually added some foods back into my diet. It's been very hard to eat more than a bite or two of anything. It's hard to drink a lot of liquid too. I just feel so damn full. However, I think I reached a point today where I got past thinking that I'll never find a piece of food appetizing ever again. Woohoo! I'm not totally put off by food. I just need it in front of me at the right time.

So the plan is to leave the hospital tomorrow. I'm supposed to get my staples out as well as the drain in my abdomen. As a precaution we are going to leave one of my butt drains in, which I don't mind, because at this point I've come so far to worry about a drain for another week. I'll be back for a post-op check up in a week or a week and a half at which point the last drain will be removed and then I'll be freeee.

Okay. Very Tired.

This is Hard

I don't think anything could have prepared me for the pain. I actually think I was better Monday night and Tuesday than the last two days. It's just been very difficult to be comfortable and stay positive. My mom left tonight and my dad is coming down tomorrow. I've had several close friends visit me, which was an incredible comfort, but I really wish my sister and brother could be here.

Considering all my body has been through since Monday, this is to be expected. But you can never be prepared, even though I've had some similar experiences. I just wish I could be home laying in bed watching my nephew play. Having iChat on my computer has definitely made it easier, but there's just something about being in a city away from your home and so far from your family that makes it tough.

It is getting better every day. Just going a lot slower than I anticipated.

I'm sure I'll have great things to report soon.

Hospitals are fun

I am forcing myself to eat Pizza right now. The first bite of solid food is never as glamorous as I think it will be. I didn't have much of an appetite before surgery, and now I'm really trying to eat just because I know they need to see more progress before I can leave.

Yesterday was an extremely rough day. It was a combination of having not slept Monday or Tuesday and my pain not feeling like it was being managed right. I could barely open my eyes yesterday and in fact did not get out of bed once, which they hate to see. It's the most frustrating experience. I'm being pumped with pain meds and anti-nausea meds and they expect me to be up, walking around, and eating. All I want to do right now is go to sleep and go home. But there's a long way to go before that is an option.

It's still very hard to type and read, so that's all for now.

Awake

Well, it's official. The name of this blog, theswollencolon.com, is no longer relevant to my health.

The surgery itself took almost 7 hours although it was supposed to be 3-5. No idea why it took so long, as I haven't personally spoken to my surgeon yet.

I spent allllll day yesterday in the post-op recovery area as there was no available bed for me. That was quite frustrating because the beds there aren't very comfortable and it's very noisy because you are essentially only separated from the rest of the post-op patients by a curtain. However, I had an absolutely amazing nurse who was totally on top of his shit so that certainly made up for the lack of my own room.

I got up to my room around 10:00 last night. Surprisingly I didn't really sleep much after surgery so I was looking forward to having some quiet time. Even though my room is private, which is so crucial, I was still interrupted by a doctor who was doing rounds at midnight (wtf) and the fact that I needed a blood transfusion. I ended up being awake because of the nurse setting up the transfusion, which requires an initial blood test, paperwork, and vitals. Unfortunately the transfusion was necessary as I lost more blood during surgery than they anticipated. However, from my experiences with blood transfusions, I always feel SO much better after getting blood. Right now I am half-way through bag number one. I still have one more to go.

I just had another random interruption; housekeeping emptying my trash...at 3 AM! It really is terrible how hard hospitals make it for patients to get some damn sleep.

Ok, this entry is all over the place, but I'm on some good pain medicine and still dealing with the effects of anesthesia, so that is to blame. Just wanted to let you know how everything went.

One last thing. I am now so grateful for the snow that pushed my surgery back a week because my mom has been absolutely amazing for me. I know my brother would be supportive but there are just certain things your mom can do or say that just make you feel better. I can't even describe in words how perfect my mom is at taking care of me.

That's all for now.