Quote of the day: "I think my surgeon was quietly going ballistic when I told him what the GI doc said."
I had to think a bit, but I have a friend who has a j-pouch as a result of cancer and an ongoing battle with lupus. She's a fantastic lady and i didn't know she had a pouch and she didn't know i had an ostomy until one day I said something. I can say that she has nothing but praise for her life with the pouch. She didn't want something external and refused an ostomy until they offered her the j-pouch option. I could totally understand where she was coming from with that. Now she goes fishing a lot and spends time with her grandchildren - she's living her best possible life.
essentially in making this decision, that's what we're all aiming for - the best possible life. The short-term is to get out of pain, stop the disease, come off crazy-making medications, but the long term is the best life possible. So view your decision through that lens. There are always people who don't respond well to one medical procedure or another. You ever hear that saying: if someone is happy they will tell one person, if they are dissatisfied they will tell 10? it applies to ostomies and pouches, especially, i think.
some of the questions i could see myself asking if i were in your position are:
1. How much surgery am I willing to endure?
2. Can i deal with a bag or do I want something hidden?
3. What's the worst that can happen with either option? (butt burn, jacked up stoma etc.?)
4. What is my and my family's capacity to deal with WPO (worst possible outcome)?
5. How much of my life am I willing to commit to this endeavor?
6. How many of these procedures a. or b. or c. has my surgeon performed?
7. What is the surgeon most comfortable with in this situation?
8. What is my best possible outcome with option a. b. c.?
It's difficult to conceive of life with an ostomy before you have it. Not even difficult, impossible. The question really isn't "what's going to cause me the least misery?" The question is "what is going to give me the best possible life?"
Eva, you really can't gauge life with an ostomy by the complaints people make. It's neither accurate nor fair. There are people who empty their bags 4 times a day, 6 times a day. There are also people who pee that often. Emptying your bag works on the same schedule. I can't pee. I can tell you that having to catheter is 1000 times more hassle than dealing with any aspect of an ileo/or/colostomy. i remember when i was facing the ileostomy i got online and so many people were so negative - but my life was on the line. Afterwards, my vanity was hampered a bit, but then I started feeling REALLY, really good. My family had never seen me as an adult who wasn't in pain. My mother cried a lot. She couldn't believe the change in me. I go to boards and chat groups and I still see the very same people making the same complaints. You can find out the possible complications and pitfalls of ostomate life from people who are happy or from people who are just plain miserable for reasons unknown but attributed to an ostomy (poor self-care and lack of self-awareness as an ostomate are incredibly common and detrimental to recovery of any sort). I have to echo Sue on this one: always consider the source.
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...