I had my surgery just a couple weeks before you. And I had evey single concern that you have. In fact, look for my post titled "I still don't get it - Smooshing your stoma". I asked about
the tight clothes, too. I still haven't tried my old jeans, but It's still early for both of us. After we've healed some more, I'm sure you and I will both be back in our old jeans again.
My bag filled with air at night, too. But, in the last week, it has gotten better. In fact, a few nights I didn't have to get up and empty until after 6 AM.
The hardest thing for me has been depression. I am normally a very upbeat person, and I was able to "handle" my UC with humor - even the yucky stuff. So, as aperson who has never been depressed, I was surprised at how it felt to be depressed. Then I got depressed about
being depressed. All of this resulted in a lot of crying. I was in the hospital two weeks after surgery, and one day, I cried every time someone walked into my room. The nurses, my aunt, my mother, my husband. I'm talking TONS of crying. I still cry if I think to many negative thoughts. So, I keep a mental list going of positive ones - like how I had a glass of wine and it didn't cause me pain.
And, as a newbie myself, just a couple weeks farther into it than you are, I want you to hear one thing. Everyone, and I mean everyone told me, "You'll be fine, things will get better." My nurses told me, My friends, My family, and the wonderful people here all told me this. "It takes time", they said. And I am learning it is true. But I'm only just starting to believe it. Seriously. It is a hard thing to believe when you're adjusting to a bag of poop hanging off of you. You are learning to take care of it, you're learning to deal with everything, and nothing prepares you for the feelings in you when reality hits. No matter how much time you spend here. So, let all of that out. Cry, scream, get angry. Just let that cr@p out. And, if you ever want to vent do it here, or send me a message. We're so close in surgery dates, I'm sure we'll be going through some of same things around the same time. There's lots of people here for you.
Your comment, "I can also tell you from a guys perspective.... if you had a flat tummy and a stripper's body, that little bag will probably be the last thing on your spouse/partner's mind, if you know what I mean... if he's any measure of a man, it won't matter in the least, believe me." - really made me feel better. It's nice to hear that from a man. My husband keeps insisting that yes, he's still attrcted to me, even with a bag, but I have a hard time believing him. Hearing another man say something so nice helps me believe. It is hard to feel sexy, even with someone I love and trust as much as my husband. I thought he was just saying it because he had too, being my husband and all. Heh.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
Surgery August 24, 2007. Home now!