yeah, I saw your post, Erin- since I haven't had surgery yet, I didn't reply. But- I am 37, I have ulcerative colitis that has become chronic & refractory over the past year & a half. No meds currently available work, not even good old prednisone does much. I became fed up with the hassles associated with UC- being afraid to leave the house/bathroom, wearing a diaper in the car, having to pull over to poop on the side of the road, cancelling everything due to bathroom issues. When my GI first mentioned surgery to me, about 2 years ago, my first thought was a giant "NEVER!!!!!!!" I figured I'd deal with the UC as long as I had too. But over time, my "normality" became so abnormal that it seemed more restricting to live with UC than to live with an ileostomy bag. Plus, when all the meds including Remicade, my last great hope, pretty much failed... what else am I to do? I wound up in the hospital with strep pneumonia, drug induced hepatitis, bacteremia, & a host of other problems from one of my Remicade infusions. My immune system has been so shot down from the meds I'm on, I've lost about 30 pounds in the past year or so, my health is crappy. And I have a 5 year-old daughter & a husband, & a life I miss living! I work at a health center, a desk job, admin. stuff. I'm lucky in that respect because I work with health care professionals, who can't help but be understanding. I haven't told a ton of people yet, because it is.... well, a little freaky. I don't know... I do go back & forth- like I said, I had a double dose of Remicade a week ago to stabilize me for surgery. It's stabilized me so well that I have 2nd thoughts about the surgery! I know, logically, I am making the right choice- I know from past experience that Remicade is not a cure, that my body has already made antibodies to it & will continue to do so. And I know that I will be "happier" & more comfortable with an ileostomy, in the long run, & finally able to get off meds. And I feel that by delaying surgery, it's just putting off the inevitable & making it harder for everyone, especially myself. But it is hard- I have a great attitude now, but who knows how I'll feel post-op? I tell you, this board has been great. And truly, to get to the mental point that I'm at right now took a good year or more. Combined with some great GI doctors, & family/friend support. I can honestly say I feel good about making the choice- I don't want it to be made for me, in an emergency situation, & the only way to avoid that is doing what I'm doing. No, I don't want to get this procedure done, but I don't want to have UC in the first place!
Eva and Erin,
Just wanted you both to know that I have been thinking about your upcoming surgeries. I wrote a very heartfelt message to you both the other night --- no it didn't get posted though cuz my internet connection timed out cuz I took soooo long writing this message, and when I hit send, it went into la-la land!
So, here is a very short to-the-point message ---- both of you, GO FOR IT!! You will be much healthier, and happier people once you recover. My history is very, very much like "flchurchlady's". It was years of oral meds and none of the new stuff was around when I was diagnosed, lots of resections, and tons of pain. But one of the best benefits you all have is the internet and forums like this one. I didn't. That just shows ya how old I am, and how old my ileostomy is!!! I had my 'final' surgery in 1984!
Please be sure to keep us all up to date on your pre-ops, doctor appts, and be sure to ask any questions you may have.
You both will be new people. My husband, who I dated prior to my surgery, told me that he couldn't believe how much I changed after surgery. Amazing what no pain, no meds, no running to the bathroom all the time will do for your attitude on life!!
Take care - Both of you. I'll be thinking of you.