My Surgery.

So I've been getting a lot of questions (understandably) about what kind of procedure I'm having done so I thought this was a necessary post. I must say though, it's pretty funny because every time I tell someone I'm having my colon removed their first response is something akin to...

"...but..uhm..really? Don't you need that?"

The short answer is no. Not anymore! It's terrible. It wants to give me cancer and make me sick everyday. Get it outta here!

I received a packet of information from the Midwest Colon and Rectal Surgery center giving me instructions for preparing for my surgery. It states...

Type of surgery: Laparoscopic Assisted Total Proctocolectomy Ileo J-Pouch Anal Anastamosis with possible Temporary Loop Ileostomy.

What a mouthful, huh?

Okay, let's go through this word by word..

Laparoscopic Assisted-When a surgery is done laparoscopically, it basically means they don't have to completely cut me open to get this organ out. Here, when I googled it, this is the explanation I got for laparoscopic proctocolectomy...

"A laparoscopic proctocolectomy is a minimally invasive surgery to remove the rectum and colon; the surgeon passes a video camera (laparoscope) and surgical instruments through several small "keyhole" incisions in the abdomen to perform the surgery."

So yes. Rather than having one huge incision along my entire midsection, I'll have a few smaller incisions. This is good.

Alright, what's next...

Ileo J-Pouch Anal Anastamosis..

The mayo clinic describes this by saying...
"The ileal pouch-anal anastomosis (IPAA) is a complex surgical procedure developed to avoid a permanent stoma (opening for collecting waste) in cases where the entire colon and rectum needs to be removed. This procedure is most often used to treat patients with chronic ulcerative colitis. The IPAA procedure involves removal of the entire colon and rectum with preservation of the anus and sphincter muscles. After removal of the colon and rectum, the surgeon constructs a pouch from the end of the small intestine and attaches it directly to the anus. In order to allow time for the pouch to heal, a temporary ileostomy (opening in the front of the abdomen) is created. The ileostomy is reversed a few months later in a second operation and the patient begins to pass bowel movements through the anus, with only slight alterations in the frequency of bowel movements. In most cases the IPAA procedure can be performed laparoscopically, which minimizes the incision length and decreases postoperative discomfort and the hospital stay."

Basically that explains all of it. It's being done with little cameras so I don't have to be cut completely open, and therefore don't have to be in the hospital as long (though if you ask me, 4-7 days is long enough for me). I'm having my colon and rectum removed. Then a pouch will be constructed from my small intestine and attached to my anus. I will then (most likely) have a temporary loop ileostomy. This is where the end of the small intestine is brought to the surface of my skin on my abdomen and I will have a pouch outside of my body to collect my waste. This is only temporary, to allow for my j-pouch to heal before waste will be passed through it. A few months after this first surgery, I will have yet another surgery where they get rid of my ileostomy and hook up my new pipeworks!

Basically they're constructing a new makeshift colon inside of me using my small intestine. It won't be exactly the same, but then again, I don't want to be the same as I am now. My digestive system is being considerably shortened, so I will go to the bathroom more often than "normal" people, but I do that already anyway thanks to the UC. At least I won't be in pain anymore! So yes, waste will go from my small intestine, into this new pouch (which is also part of my small intestine, just reconfigured) and then out of my body. The pouch acts for me as a colon does for everyone else. Your colon basically holds your poo until you're ready to go to the bathroom. That's exactly the purpose of my j-pouch. Make sense??

There is a chance I will not have to have an ostomy bag. I won't know until I wake up whether or not I'm going to have one. This is a little worrysome to me, but I trust my doctor. Sometimes they do this procedure all in one step where they just hook you right up and let you go. The nurse told me he will not be able to tell what I'm going to need to happen until he gets in there...so yeah..I may wake up with a stoma and I may not. I'm prepared either way.

Prepared to feel better and to be healthy goddamnit!

My Story Continued

So when I left off, I was at the hospital and had just been told that I had UC. The biopsy was to make sure there was no cancer, if I'm not mistaken in my remembering (and there wasn't).

I'm pretty sure at this point in time I still didn't have a GI (gastrointerologist) yet. I was just seeing my family doctor. After my diagnosis, however, it was time to get referred to a specialist. I think my first specialist was a man named Doctor Yoo. The first drug I was put on was called Imuran/Azathioprine. This medicine was pretty risky. I was given a paper explaining all the possible risks, to make sure I knew what I was getting into. This medicine is most often used to treat rheumatoid arthritis and is also used in patients who have had organ transplants to make sure that the organs take. It was also found, however, it could be used for UC treatment. I've found that a good percentage of drugs used to treat UC weren't developed to help UC patients originally, it was just found that they can help them as well. As a side note, this is extremely frustrating to me. It's the most annoying thing to realize that you have a disease that all these amazingly brilliant people in the world can't figure out how to fix. Why would something like this ever be real?

At any rate...Imuran is an immunosuppressant drug. You see, my disease is basically my immune system attacking the lining of my colon, because it thinks it shouldn't be there. So it makes sense that they would use the same type of drug for UC as they do when someone has an organ transplant. They're basically trying to prevent the same thing from happening in both cases. At any rate, it comes along with a lot of scary side effects (as I would eventually learn that many UC medications do). Neoplasia, lymphoma, severe infections, bone marrow issues...It was scary to hear all the things that could go wrong with me because I was taking a medicine to make myself better. It's quite overwhelming to think that I could just be trading off some symptoms for others.

I was on prednisone during this time as well. Prednisone is a type of steroid. It also disables your immune system. Now prednisone is a terrible drug. If you haven't seen my posts on here from when I was taking it, let me give you a rundown. It gives you trouble sleeping, makes you an overemotional wreck, makes you fat, gives you cushings syndrome where parts of your body just start puffing up and looking ridiculous, and it completely fucks up your body. There have been people with UC that end up having to have hip replacements in their 40s because they were on steroids so long or so often that it completely killed their bones. It's obviously terrible for your organs as well. It's the worst drug that I've ever had to take in my entire life.

I was on these two medicines for a bit, but wasn't getting better fast enough. They switched me from the Imuran to a drug called Asacol, and upped my dosage on the Prednisone. I was taking somewhere near 60 mg of Prednisone a day, which is an insane amount. Asacol is part of a group of drugs with the main ingredient mesalamine. Mesaslamine is supposed to discourage the substance in the body that causes inflammation, therefore stopping tissue damage, etc. It is not, however, an immunosuppressant.

Steroids are not a long-term medicine to help the symptoms of UC. It works, don't get me wrong, but as I said, they're extremely bad for you. The reason I was on steroids coupled with other medications is so the steroids could get my disease under control quickly, and then the other medicines (which take a bit to start working) could start doing their job easier. Then what they do is taper you off of the steroids (it's extremely unsafe to just stop taking steroids, especially at high dosages) and then the other medicine is supposed to pick up where the steroids left off. ...I hope that makes sense to someone other than me...

It took a little while, but I started getting better! It was amazing. I was at home from school a little while longer, but then I got to go back. It was...more than weird. I had missed over a month. I still only weighed 80 lbs, and no one really knew why I had been gone so long. No one had ever heard of ulcerative colitis. It was embarrassing to have to actually explain my disease, so I told everyone that I simply had ulcers in my digestive system. Even though I was sickly skinny, and pale as a ghost, no one at my school got to see me while I was deathly ill. So to them, it seemed like I magically disappeared from school with no previous signs of anything wrong with me, and then I came back a little bit thinner, but that was it.

The rumor was that I had gone to rehab for an eating disorder.
And that was started by one of my friends.

High schoolers are bitches, especially when you're from a small town when there isn't anything better to talk about.

I busted my ass to catch up. I had to do what we were currently learning, and the current homework, while catching up on the month of learning and homework I had missed. I stayed up until all hours of the night studying, reading, and working harder than any of those people in that damn school had all year. I was happy to do it though, because I felt fantastic. I'm pretty sure at this point I was taking somewhere near 13 pills a day. I had to take an iron supplement because of all the blood I has lost due to my disease. I didn't even care though, I was healthier, and I was back to my life. It was wrestling season. I got to cheer my boys on and hang out with my friends, it was fantastic.

I definitely developed a terrible case of cushings syndrome though. I had not really been warned about the side-effects of my steroids. I had a lot of trouble sleeping because of them, and my face ballooned up like a chipmunk trying to hoard nuts for winter...it was gradual, but damn when I realized how bad it was, that was all I could see when I looked in the mirror. Maybe I'll dig up an old picture of it, because looking back, it really is hilarious. One good thing, though, I never had to deal with the mood swings during my first time on steroids. I was just so happy to be feeling good.

It wasn't all sunshine and lollipops though. The teachers didn't really believe I had a reason to miss school for a month. They wouldn't admit it, but I could tell. People made fun of me because my face looked funny. It was still rumored that I had left because of an eating disorder.

I was okay though. So what if I didn't get to have any senior photos taken of me. So what if a few people thought I looked silly, and was way too skinny. Honestly, both of those things were true! I didn't have to run to the bathroom anymore. I wasn't in pain. I was weaned off my steroids, and my face slowly returned to normal. I got back up to my normal weight, and my jeans no longer sagged off my body. I didn't have to hide under sweatshirts because I was too embarrassed for people to see how skinny I was. The asacol was doing the trick. I went off to college at IUB in the fall, and was ready to start a new and fantastic life. I wasn't perfect, but I was better.

At least for a little while...

My story.

So I just realized that I haven't actually shared my UC story from the beginning. I think it's time to do that, considering I'm getting this surgery done, and therefore my disease is a bit more public with people I know, and they're (understandably) curious.

As I go to write this...it's strange to me how fuzzy my memories of it all are...It's been so long, and so much has happened, that I'm having a tough time remembering just how it all got started...

It was '06..I remember that much. I was a senior in high school with big plans and lots of activities, as most of the seniors did. I was a runner (both track and cross country) and I was also in the school play. When my symptoms first started, I ignored them. They were typical UC symptoms (obviously) bleeding, urgency, intense pain, etc. Pretty serious symptoms, right? Well, my pride won out over the terrifying symptoms. I was absolutely mortified just at the thought of having to tell someone what was going on with me, so I didn't. I dealt with the pain for 6 months without telling a single soul what was going on with me. It was during cross country and simultaneously play (thespians) season. I remember being outside during XC practice and having to sprint to the bathroom in crazy pain. I could barely make it through practices, and spent a lot of my time hiding out in the bathroom hoping no one noticed I had disappeared during what was supposed to be an hour long run. I had no idea what I was going to do when the season really started and I actually had to race. You can't just run off the course to use the bathroom and start up again! All the while, the play was happening. I was in the running for the lead role, which I wanted more than anything else in the world at that time. Quitting XC was already on my mind because of the complications with my health, but when I spoke to the play director and she told me that I got the lead, quitting XC became that much easier. I tried balancing the two for a while, but being the lead in the play meant that I had to be at every play practice. So I quit cross country and focused all my energy on the play. Play practices were intense to say the least. Especially when it gets close to time for the production, you're there from right after school ends at 3 until 10 pm. Not to mention this happens right around midterms/finals or something..I just always remember having to cram for exams on my breaks offstage. I loved the play, but it was also an event where if I had to, I couldn't just run offstage to take care of my current health problems. I spent a lot of time with my fellow castmates. We ate dinner together almost every night and were around each other constantly. It was hard for them not to notice that something was weird with me. However, no one mentioned anything to me, at least not then, and not to my face.

The play went fantastically. Despite extreme nerves, and having to be on the stage damn near constantly, I made it through all the productions without having to run offstage to the bathroom, or miss a cue due to my illness. The last performance was on Saturday. I didn't make it to school that next Monday.

You wanna hear the funny part? I still didn't want to tell anyone about my disease. I would have kept it a secret. You know why I finally decided to tell someone that Monday? I just didn't want to go to school...plain and simple. I was tired, and I didn't want to do it. Forget the fact that I was in intense pain, with something clearly wrong with me...I was feeling lazy, and I wanted an excuse not to go to school. Bleeding colon? As long as it gets the job done! I texted my mom that I wasn't going to school because I was bleeding when I went to the bathroom. That was exactly how I worded it. She just assumed I meant when I peed. Nope. Of course not, that's not NEAR mortifying enough for me...When she found out what was really going on, she freaked. Understandably.

I had been dealing with it so long without anyone else knowing (about 6 months, like I said) that it had become no big deal to me. It took her freaking out for me to realize how serious whatever was going on with me had to be.

My health took a real quick downward spiral around this time. I'm really not sure how I dealt with it so long without medicine, without doctors knowing...without anyone knowing...I'm lucky I didn't wind up in the ER, or worse. Not telling anyone about what was going on with me was the dumbest thing I've ever done in my life. So many things could have happened...but I let my pride get to me, and keep me from doing what I knew I should have done. Never again. And please take my advice here..no matter how embarrassing a medical condition is...go to a fucking doctor. They don't give two shits, (no pun intended), I promise you. It's they're job to deal with these things.

At any rate, they couldn't figure out what was wrong with me at first. They thought maybe hemorrhoids, a fissure, I don't even remember all the possibilities they ran through. All the while, I was getting sicker and sicker.

I couldn't eat. I wouldn't eat. I laid curled up in a ball in a chair in the living room. I had no energy because I had no nutrients. I was out of school indefinitely. I lost 20 pounds in 2 weeks. I weighed 80 pounds. I was a (barely) walking bag of bones. I only got up out of my chair to go to the bathroom. I didn't even have enough energy to stay awake through a half hour long TV show, yet when nighttime came, I couldn't sleep for the pain. My skin was almost green.
My mom thought I was going to die.

I remember being alone a lot. I don't think my mom could bear the sight of me. I remember a few times of my family coming over to check on me, but I couldn't stay awake long enough to really interact with them. They were all so worried...

The doctor decided we had to do a colonoscopy to find out what was going on. At this point they still had no idea what was wrong with me. I don't know how many of you have ever known someone that had a colonoscopy done, but the prep for it is absolutely terrible. They have to clean your bowels out, obviously so they can see what's going on, and let me tell you..it's absolutely awful. There are many different ways that you can go about the prep, but the one they were going to have me to do was a medicine that was mixed in with a sports drink. You had to drink somewhere near 64 ounces of gatorade with this medicine in it that made you shit water. Literally. Somewhere about halfway through you're literally shitting clear as water, and it's absolutely awful for so many reasons.

At any rate, I couldn't do it. As I said, I hadn't been eating, and I'd barely been drinking anything. My stomach couldn't handle all those fluids. I couldn't force myself to drink it. I remember crying..my mom was crying...If I couldn't get the medicine down, I couldn't have my colonoscopy. If I couldn't have my colonoscopy, we couldn't figure out what was wrong with me...

I couldn't force it down. My mom was so upset, almost angry with me. I just curled up in a ball and stayed that way all night. We went to the hospital the next day and were told as we suspected that they could not perform the procedure since I couldn't finish my prep. We were devastated. That meant I had to wait another week and then try a different approach to the situation. Another painful and scary week...

The next approach was pills. 32 pills, to be exact. You take two every 15 minutes, and are supposed to drink 8 oz of water with them, because they dehydrate you so much. It was hard enough for me just to get the pills down, so we settled for that. My oldest sister was there, I remember...I was crouched on the floor crying and saying that I couldn't do it...They were crying too because they knew how hard it was for me, but we all knew that I had to get those damn pills down...

My mom promised me a new winter coat if I finished my prep...
Hardest thing I've ever had to do for a damn coat in my life!!

I got the pills down though..spent the entire night completely miserable and running to the bathroom more often and more urgently than usual, which is saying something.

I remember getting to the hospital and being put on the bed. It was the first time in a while that I didn't have to go the the bathroom..I was fucking empty. Stupid nurse kept missing my vein for my IV...I bled everywhere...They wheeled me back and the nurse said

"At least you have long eyelashes..."

Looking up at the lights in the room, just like in the movies..Doctors in masks over me...told me to count backwards from 10...I was out before I even got to 8. I woke up and remembered really needing to go to the bathroom, immediately. The nurse told me I couldn't go until I had been awake for a while but that she would get me a bedpan. I absolutely refused. I wouldn't sink that damn low, come on now...I waited for another nurse to walk by less than a minute later and acted as normal as I could...She let me get up and go to the restroom.

They showed me, my mom, and my sister Sandy the pictures of the inside of my colon. I'm pretty sure they took a biopsy too. I was in a wheelchair..I didn't want to look at the pictures. I wouldn't do it. Everything is so fuzzy...They diagnosed me with ulcerative colitis.

Now what??

(I appreciate all of you who read through all this...it's really intense for me to basically relive it all...so I'm going to take a little break...let this bit sink in, and I'll update this again soon with the rest of the story...)

Don't feel bad for me because I'm getting surgery.

There's something I really want to make clear with all of this. It seems to be a trend, when talking about my surgery, for people to tell me that they feel really sorry for me that I'm getting this surgery done, and they're sure that I'm worried, and upset about it...

I am worried, it's natural. I'm having a large, quite important organ removed from my body, and it's terrifying. That aside,

don't feel sorry for me because I'm getting surgery.

If you want to feel sorry for me (which, let me make clear, is not at all what I'm wanting or asking for) then feel sorry that I've had to live sick, with this terrible disease, for the last four years of my life.

This surgery is a GOOD thing.
no
a GREAT thing.

I'm getting this diseased organ out of my body. It doesn't belong, and frankly, I don't want it anymore.

It's five days until my surgery and though I am terrified, all I can think about is all the things I'm going to be able to do once it's over with. I'm going to have my life back. I'm going to be healthy. I'm not going to hurt every day of my life anymore.

So be happy for me. Be excited.
I know I am.

Of course, all thoughts/prayers are more than welcome. As I said, it is terrifying. I'm beyond scared. But the outcome will be worth it, I know.

Thanks to everyone who has been there for me the last 4 years, and helped me with this. And thanks to those who had no idea I was even sick, but are there for me now. <3