6-21-2010

That's the day that my life is going to change forever.

I met with a surgeon this past Tuesday, and he's going to perform my surgery for me! I went into the appointment completely skeptical, and assuming he was going to be like the last surgeon that I met with, and my GI, and tell me that I shouldn't want to have this surgery done, and that he wasn't going to do it for me, but that wasn't what happened at all!

We went through an abbreviated history of my disease, and all the medications I've tried and such, and how I've been feeling lately and everything that I've been going through. He listened very carefully, making notes as I told my story, and when I finished, he basically said that what I'm going through is terrible. It was such a relief to hear that, as strange as that sounds. I think too many doctors become desensitized to their patients problems. I honestly expected a response like those I get from my GI so often; "Well my patient so-and-so has it worse because they had to deal with such problem and such and such problem...You should be glad you don't have to deal with that..." etc. But that's now how this surgeon was at all. He was so incredibly sympathetic. He said that he can tell my quality of life isn't high, and that he knows that I'm living okay now, because I don't have any other choice, but that he could tell from what I told him that my life is rough, and no one should have to live the way that I do every day.

Him saying that, and agreeing that I can't keep living the way I am right now, was the biggest relief of my life. I honestly almost cried.

I assume most people that read this blog as of right now are fellow UC sufferers, which is great. But to any of you out there that do not have UC or crohn's or anything like it, it really is indescribably terrible, and almost impossible to describe to someone who doesn't have to go through it. I'm thinking about posting this blog onto my facebook once the time of my surgery approaches. That way, those close to me, or those wondering why I'm not around school, and permanently attached to Liesl's side anymore can read up and see how I'm doing. I guess I'm just apprehensive since my disease and this surgery process are going to be very...personal? I don't know if that is the word that I'm looking for. My disease is just gross, okay? I realize this. It's been around for four years, how could I not realize it?? But it's important for me to share my story with others. I know for me, the blogs of others with my condition have been so helpful in trying to deal with my condition. Beyond that, I know some people that know me are curious about my condition..if I share my blog, maybe they can understand it more? :sigh: I don't know. I'm going to do it either way.

So...if you're reading this, and you don't want to feel awkward, or have the possibility of being grossed out, read no further. This disease is gross, it's terrible, and it's been doing it's best to ruin my life for the past four years. I'm putting a stop to that right now. This is my story about it. If you're interested, that's fantastic, if not, go away.

this is the worst medication ever invented.

I don't understand why anyone would look at the side-effects of steroids and think that it's an okay thing for people to put into their bodies.

So far I'm experiencing every terrible side effect that I always get when on this damn medication, and not ONE glimpse of the help it's supposed to give me in making my disease less terrible. I'm biting everyone's heads off, I don't want to talk to anyone, go anywhere, say anything, eat anything (which I realize is unusual since steroids normally make your appetite ridiculous)...I can't sleep for shit...and the little amount of sleep I do get is constantly interrupted by my ceaseless thirst and then inevitable need to piss; ALOT. I'm depressed, to say the least. I'm just waiting for my face to balloon up so I can crawl even further into my whole of isolation and hatred for fucking everything.

back on the 'roids.

Fan-fucking-tastic.

I'm back on prednisone. In February the pharmacy messed up and didn't order my Asacol HD. I had to take the lower dosage of Asacol for a weekend, and it completely messed up my entire system. I had been fairly okay before the mix up, but it all went downhill from there. I completely relapsed into my flare-up. I got back on the HD Asacol after a few days, but it just wasn't the same. And now I'm back on my steroids. This coming Tuesday I'm meeting with another (different) surgeon. My GI still disagrees with my feeling of needing surgery, but I just don't know what else to do anymore. He thinks this surgeon will disagree with me just as the last one did.

I'm just lost. I've been on my steroids for about a week and am already experiencing some of the terrible side effects. My emotions are out of control and I can't sleep. I started a new job recently and have already had to leave work once because of my UC. No one understands, and I can't explain it to them. It's so weird. Total TMI moment if I really explained to them what my disease is.

"You're too young to have ulcers."
"You're telling me...I've had them since I was 17..."

I don't know what to do.

i hate doctors.

why can't i force myself to make an appointment with my GI even though I'm experiencing ridiculous, terrible pain?

i hate doctors.
hate them
hate them
hate them.

i hate that they still get paid even if they can't find out what's wrong with you.
i hate that they will get paid even if they can't make you better if they do find out what's wrong with you.
i hate that they're so pompous about 99.9% of the time.


ugh.

i don't want to go back and be told that no one is going to perform this surgery on me.
i don't want the #1 think on my mind at all times to be where the bathroom is located in a new location, and how fast I can get there without looking weird.

*sigh*

apologies...

It has been quite some time since I've posted...I apologize. ( I do, after all, have ONE whole follower..I'm sure I've been disappointing them.)

At any rate, I guess I just became extremely discouraged after meeting with my surgeon and basically lost all motivation to keep up with this blog.

It didn't go well, to say the least. I had an entire list of questions to ask him about the surgery, so I could be informed and ready for all ahead of me. Well, it didn't even get far enough for me to ask a single question on the list.

It was the same situation that happened when I mentioned surgery to my GI specialist. He acted like I was a crazy person for even considering this surgery as young as I was. He was telling me all the negatives ( that I already knew, thanks to my extensive research ) as though he was trying to scare me out of the surgery. My mom started crying. She was so upset that he wasn't going to even consider the surgery. She hates seeing me in pain, and is afraid that I'm going to get extremely ill again like before. I was just stunned. I didn't say half the things I would have loved to say; I knew it would have been pointless anyway. I believe fairly close to his exact words were "You're not going to scare me into performing a surgery that I don't want to perform." Meaning I could threaten to go to another surgeon, etc. but I wasn't going to change his mind, which I think was made up almost immediately.

It infuriates me that I, weighing just over 110lbs could walk into a plastic surgeons office and say that I wanted to have liposuction, and they would do it, no problems; but I can't walk into this surgeons office wanting to have a diseased organ removed to stop my chronic illness, without being shot down almost immediately.

Absolutely ridiculous.

I will be updating more often, as I think it's nice to have a journal of how I'm doing with this disease.
Expect another post tomorrow...

tomorrow, tomorrow, i love ya tomorrow...

i know, i know...stupid. it was just this first thing that popped into my head.

while on the phone with my sister this evening, i realize how difficult it is to find a picture of a colon. i just wanted to know what one looked like, since i'm going to have mine taken out after all.

at any rate, i meet with my surgeon tomorrow. i'll let you know how it goes!

Questions for my surgeon...

I've been doing TONS of research in preparation for meeting with my surgeon/having my surgery. I've put together a list of questions to ask my surgeon when I meet with him on Wednesday. I know I could find the answers online, but it's hard to make sure you're getting the information from a reliable source sometimes, plus I want to hear it from my surgeon. Anyway, I wanted to post the list here in case anyone had any ideas of questions I was missing. Any help is much appreciated!

-What are the differences between the different surgeries? IPAA vs IPDRA
-What are the pros and cons of each?
-What is the normal length of time between colectomy and take-down?
-How long is the recovery period for each stage? (getting up and around, and getting completely back to normal)
-How long will I need to stay in the hospital for each stage?
-How long will I need someone to take care of me for each stage?
-What meds will be required after surgery?
-For each surgery, what is the likelihood of recurrence of UC in remaining bowels?
-How often do your patients develop fertility issues?
-How common is loss of bowel control? (day and night?)
-I know that I'll be going to the bathroom much more frequently, but will the same urgency be present (as there was with UC?)
-How many incisions and where?
-How many of these surgeries have you done?
-Would you be able to operate in late December or early January?
-I was told there are medicines that can be taken that make the waste in the ileostomy bag odorless/colorless, is this true?

I'm also allergic to tape/bandages/etc. so I'm hoping they have some sort of alternate method they can use for my IVs and such...and using surgical tape for my wounds after/instead of stitches is probably going to be a no go as well...


I'm so incredibly nervous. This is such a huge step!