Posted 6/13/2015 4:03 PM (GMT 0)
I can sympathize with the dilemma you are in: when I first got the news that I might need a stoma, I told the doctor I thought I'd rather be dead than wear a bag of poop. As things became more critical, I did drop the melodrama and accepted the need for a stoma, and as soon as the surgery was over, I felt so much better I was more grateful to, than resentful of, the stoma.
My experiences may be less relevant to you, because I had diverticulitis for about a year before the surgery, rather than the really debilitating diseases most of the members here have suffered from for years. Also I still have most of my colon.
1. I had open surgery in January 2014, but the pain was reasonably controlled by a pump (delaudid). I used the pump for I think three days, then needed only Tylenol. I was in the hospital for 7 days, mainly because my bowels wouldn't start working, otherwise I probably could have left sooner. When I got home, I walked with a cane for maybe two or three weeks, and did tire easily. I live alone, and was given about 20 hours of home help over 2 or 3 weeks, for vacuuming, bed changing, cleaning the bathroom, etc.. There are quite strict limits on how much you can lift for the first month or so, and really for the rest of your life you have to be careful of heavy lifting because of the risk of hernias.
But in two months, I was up for a trip to California involving three separate flights over 12 hours, not to mention the joys of security, customs, and immigration. I didn't do anything really strenuous, but took several short hikes in nearby state parks, city walking tours, not to mention shopping.
Like SuperBlanks, I don't really remember my reaction to seeing the stoma. Mine is not so well-shaped, doesn't protrude more than 1/4" or so, and the outlet pointed downward, which caused some problems at first but are resolved now.
2. How much help you get at home depends on where you live and maybe insurance coverage -- in Ontario, I got the home help I mentioned above, and daily nurse visits for maybe 2 weeks, and less frequently for another couple of weeks. I had a bit of a rough time here, all the stoma nurses seemed to have gone south for the winter, and because I never had a bowel movement in the hospital, I never had a demonstration of how to change. But as soon as I got home and got to eat my own cooking, everything started working. The home care nurse came early the next morning and gave me a change and a lesson, and brought "starter" quantities of all the supplies I would need. I had a nurse come daily for at least a week, both for the bag changes (I was leaking in a matter of hours) and for the dressing on the surgical wound. These visits decreased in frequency, and finished with the removal of the staples.
I had major leakages until I insisted that the home care people send a qualified stoma nurse -- she switched me from a regular to a convex flange or wafer, which greatly extended my wear time, but I still was subject to unexpected leaks. I visited a clinic about six months after surgery, and was advised to switch to precut wafers -- that greatly reduced the unexpected leaks, in January of this year I dropped all use of rings or paste and haven't had a leak since. This latter is not typical.
I change the bag and wafer every 6 days. Not sure how often I empty the bag during the day, maybe 4-5 times? The change took about 45 minutes when I started, now I'd say it's about 5 minutes. Switching to the precut was a factor, but mostly it's just practice, and confidence in what I'm doing. It all does get easier as time passes. I am lucky to have had no skin issues.
I asked my sister and my daughter to tell me if they smell anything. Either they are polite or I don't smell.
3. I had a low residue-diet that I was advised to follow for 4-6 weeks after surgery. I started cheating after three weeks. Nothing has ever bothered me.
4. My fertile years are long past, but I've read posts from others who have had children with a stoma not sure if here or elsewhere.
Take heart, you are right to prefer to be alive and well, my experience is that the inconveniences of the bag are far, far outweighed by the huge improvement in general health and energy after removal of the source of the disease.
Stay in touch!
Ann