Over a year...

I've been struggling with this flare.  I just realized that a few weeks ago.  My first symptoms started last January.  March, I had a colonoscopy (a VERY difficult one where we actually filed a complaint with the head nurse as they ignored my post-scope pain that was EXTREMELY painful, NOT Normal.)

So, where are we now?  Seemingly further away from a solution to problem.  I'm so frustrated.  I'll be okay, and deep down I know that.  I know that once I meet with my GI and my surgeon, I will know what is the right decision and this will end...I KNOW this, but it doesn't make the daily grind any easier sometimes.  I think I enjoy work and everything just as much as I don't enjoy it.  I enjoy it because it keeps my mind off all the pain.  I don't enjoy it because I sit in physical pain day in and day out.  I have only missed a few days, but I have been habitually late for the past 6 or so weeks, when I went off steroids.  It takes EVERYTHING in me to get out of bed, get dressed, and get Addy dressed and out the door.  I'm getting better about doing as much as possible the night before, so when I awake in pain, I don't have to think, I just do.

So, here's the low-down.

I'm meeting with Dr. Stone, my GI, on Feb 17th to discuss 4 drugs...
1) Methotrexate - I refuse because it's what is used to end ectopic pregnancies and/or to help finish a miscarriage, and REALLY want to bear more children, so I do not see this as a forseeable option.
2) Humira - another biologic drug (like Remicade) - I give myself a shot every week - Easy, I did IVF for goodness sakes!
3) Cimzia - another biologic drug via shots, just a little different then Humira
4) Tysabri - A biologic, via infusion every 4 weeks in the hospital - no biggie..>Remicade was every 6 or 8 at the hospital same way.

So, my issue? I refuse Methotrexate for obvious reasons. And, the biologics are beginning to scare me. They rush them through testing/clinical trials and Tysabri had to be sent through twice, why? Because 3 people DIED in them! Now,they figured out why, but seriously, I don't have it in my heart to risk that drug, not yet. If I go this route, I'm going to likely do Humira, but I only have a 20% chance of Humira or Cimzia working because I failed Remicade. I'm torn there. My GI is pushing Tysabri, but I can't do it.....not yet, at least.

So, then I called the GI and didn't hear back from him for a week.  Why?  (Because I always hear back from his sweet nurse Teri within 24 hours)....He's had my chart on his desk ALL week and he's been consulting with others on my case, I guess it's difficult, lovely!

Anyway, I meet with him on March 3 and get this, they gave me a FULL HOUR with him to discuss surgery options.  Of course, if he thinks a biologic is the right way to go, then we'll go that route.  There are other risks associated with opening you up for a procedure, so it's all complicated.  I won't know details until we talk, but we could do a resection (cutting out a bad part of the instestines and combining the two good parts together), a permanent ostomy bag (take out the colon), or a temporary ostomy bag (which would give my colon a break for 3-6 months).  It's a LOT to digest....

Anyway, thought I'd update you all on that.  It has just plain exhausted me to be honest...I need something to go my way and soon.

(Oh, and if you didn't figure it out, I'm bailing out of the study because it's not working.)