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!

articles worth reading

Surgery for UC is a difficult choice.

and

Guide to ileostomys. <-- This one gave me TONS of info just about ileostomys. My sister came across this website, and it has more info on ileostomys than any website I have found in my research so far.

surgeon

I got an appointment with a surgeon quicker than I expected! My mom and I are meeting with him next Wednesday morning.

So I had posted before that my doctor told me all I needed to do was call if I wanted a list of surgeons I could meet with. Well I had done that, and hadn't received a call back for almost a week and a half. I finally got a call back yesterday from a nurse and she said she was calling to schedule my consultation with a Dr. Pittman. I told her that I would have to call her back because I was thinking about meeting with another surgeon that I had found on my own, and I needed to talk to my mom about who she thought I should meet with. The nurse said that was fine, and asked who the surgeon was. I told her. She then asked for his contact information, etc. so that my doctor could send him my medical records. I told her that I didn't have it on me, but that I would call them back and give it to them once I got my appt. scheduled and such. She said that would be perfect because "Dr. Fecht wants to have a talk with him."

What the hell does that mean?

I texted my mom after getting off the phone with this woman asking her what I should do. (Whether I should meet with the doctor he was recommending, or that one I had been planning on going to.) She said it was up to me. I've decided to trust my first intuition and go to the doctor I found on my own. My mom brought up a good point as well that my gastro. has already told me he doesn't want me to have the surgery, and for all I know he could be friends/colleagues with this guy he is recommending and so he might try to scare me out of getting the surgery or something as well...you get my drift?

Who knows.

At any rate I have an appointment with doctor Melbert of the Kendrick Center in Indianapolis next Wednesday. I'm nervous, but very glad that they got my an appointment so quickly.

I hope I get good vibes from him and he's not creepy. I'm sorry, but things like that really do matter. For example, while looking for surgeons, my sister and I came across a man that looked much like a creature from star trek. We joked that he would eat my colon after he took it out. He was a terrifying looking man.

At least I have a sense of humor :)

I'm a bitch.

I am so mean to everyone that cares about me and I can't help it.

It's driving me crazy.

I flip out about everything. If even the smallest thing doesn't go as planned I freak out. If something doesn't work right the first time (for example, the battery in the TV remote was going dead and it wasn't working properly) I freak out. I don't know what to do.

I've flipped out on/around my mom about stupid shit like 5 times tonight. I just went up in my room and cried. I don't know what to do. I feel so alone and not in control of myself and my emotions and there is nothing I can do about it. I can go from elated to depressed to pissed off within the span of 10 minutes. I can't sleep anymore, and I constantly feel like crap.

How nice that my doctor has planned for this to be my life for quite some time.

Thank goodness I have plans of my own.

pills pills pills

So I'm a bit late on the update, but better late than never I suppose. I had the appointment with my doctor two weeks after my flex sig. He said there were two medicine options for me. #1 was Azathioprine (Imuran) and the other was Remicade. The side effects of Azathioprine range from infections, bone marrow problems, etc etc. (I don't have the paper that listed them on me right now) and cancer. He recommended I try that one first. He also talked to me about Remicade which is an infusion via an IV that I would have to go to the hospital and get every 8 weeks. He said that would be a last resort. He compared it to shooting a mouse with a cannonball. I told him that the Azathioprine sounded really familiar, like I had taken it before. He checked what records he had and said that he didn't have it listed, and that maybe I had just came across information on it online. I told him that I didn't think so, but he gave me a script for it anyway. I then asked him what he thought about me getting a colectomy. He seemed completely surprised that I had seriously been considering getting my colon removed. "You've discussed this with your mom?" He asked. "Yes. She agrees with me." He then went on to tell me about how it can decrease my fertility 10-30% etc. etc. and that he really didn't recommend someone as young as me get the surgery. I told him about my insurance concerns (that after I graduate there is no way I will ever be able to pay for a $100,000 surgery) and he told me that I could take out a loan. Yeah doctor, I'll get right on taking out a loan for that...when I'm already going to be paying off my school loans for the rest of my life. PASS. You're a fucking doctor. You're getting paid $100 just to talk to me for half an hour right now. You have no concept of what it is like to worry about money. And as for my fertility, how about you let me worry about that? Besides, I can't start/take care of a family if I'm sick, miserable, and angry all the time. Not to mention the fact that if I have my colon removed I no longer have UC which means you lose a patient. He told me that if I was really interested that he would give me names of surgeons, but that he really recommended that I try this medicine and try to get it under control with that. And I quote

"At least we know that the steroids work. That way if this medicine stops working we can just put you back on steroids and try something different!"

Yeah doctor that sounds fucking perfect. You start off telling me that you won't need to put me on steroids ever, no matter what. And suddenly they've become your cure-all solution! Fucking sweet! Not to mention the fact that (i don't know if you heard...) STEROIDS ARE BAD FOR YOU!

I would also like to know how many patients you've had that were diagnosed when they were 17, have only had UC for 3 years, and have already eliminated all but two medication options. Scratch that, all but one. After leaving his office, I called my mom and she called Target pharmacy who told us that I was prescribed Azathioprine when I was first diagnosed. Things from that time in my life/disease are a bit hazy, but I seem to remember being prescribed it and it didn't work so they put me on another medication. I immediately called my doctor (from the parking lot) and told him this. His response was "Maybe you just weren't on it long enough. We'll try again and if it doesn't work, we'll move to something else." Like I'm just his fucking guinea pig! NO! Then I asked him if I could try Asacol once more. I was taking it, and it was keeping my disease under control, until my last CRAZY doctor starting weaning me off it if claiming that I could be med-free. This doctor (fantastically enough) has dropped off the face of the planet so therefore I don't have a way to get my old medical records. Which means I don't exactly know why I was taken off of the Azathioprine. *sigh* I know I'm sort of rambling. I hope this is making some sort of sense. At any rate, he said he would mail me a script for Asacol and we would try it once more. I left his office in panic basically.

Steroids = I can't sleep, I'm constantly hungry, I'm a bitch, and I have panic/freak out attacks all the time.

I got the script with instructions from the doctor to wean myself off steroids after I started taking the Asacol.

Oh, wanna hear the best part? Read this about Remicade. That article was posted the DAY of my appointment. Coincidence? I think not.

There is so much more I want to say...but it's just making me anxious and nervous and *sigh*. I just need to calm down. I'll update more soon hopefully.

I feel okay sometimes. But when I have a bowel movement I feel terrible. And for some time afterwards as well. It's so depressing. I've been snapping at my loved ones, crying, and basically just freaking out constantly.

I just want to get well.

IBD songs

I came across this website while doing research on UC. His name is Jordan Sweeney and he sings about his experiences with Ulcerative Colitis. I think it's really neat, and easy to relate to if you have IBD. It also might be helpful for those with loved ones that have an IBD to try to understand what we are going through.

<3

listen.