Hi ep, like a couple other posters here my stomas are temporary because I'm working towards a j-pouch, but I did strongly consider keeping my end ileostomy after the first surgery because I was so happy with the ileostomy lifestyle.
Just to give you an example of life with an ileo... Yesterday I got up, took a shower, ate breakfast, and took the subway to work. I did my work, running around the office, going up and down the stairs (no time for elevator!), and ate lunch in the cafeteria with my coworkers. When the day was over, I took a long walk through the park with my friends, went to a museum exhibit, had a drink, went to dinner, then took the subway home. I was away from home for about
14 hours straight! This morning I woke up, took a shower, and changed my ostomy appliance (I change every 2-4 days, honestly at this point I pretty much just change depending on when is convenient for me, I know the next two mornings will be extra busy so I changed today) -- it took about
So as you can see... except for the fact that I took an extra five minutes to change my appliance this morning... everything else about
my life is pretty much just like it was before surgery. Actually, more like before I got sick, because before surgery I wasn't able to do ANY of the things I described above!
There is definitely a learning curve associated with having an ileo. I've got my routine down and it takes me about
five stress free minutes to change my appliance nowadays, but a month ago I was so frustrated doing it that it made me cry! It's pretty much a given that the first month or two will be a bit stressful and overwhelming. It doesn't help that you'll be recovering from surgery at the same time, which can make your emotions a bit haywire, to put it mildly. But, especially since your ileo is permanent, you go through the "training period" and then for the rest of your life you're good!
I recorded a video a few months ago of myself doing my appliance change with my first stoma, you can see it here: /www.youtube.com/watch?v=26rpN2ECnQE
. It's funny for me to watch because I've "refined my methods" more since then, but I think either way it goes to show that it is really no big deal... There's a bit of "arts and crafts" involved as you can see, but your WOCN will teach you and you'll have lots of practice with time too.
My quality of life is very, very good. To be quite honest, I had my period this week (after a long time of not having it due to health and stuff), and it was a lot more uncomfortable and difficult to deal with than my ostomy! My ostomy doesn't prevent me from going for a run, riding my bike, going to the beach, etc, but I had to take it easy this week because of my period. So, not sure if you're a man or woman, but if you're a woman maybe that it will help put things in perspective