It’s been awhile since I’ve been on the site... but I’m glad I did today because it sounds like we have very similar situations.
I had my first 2 step jpouch in 2008; after years of suffering with pain, pressure, incontinence, frequency to name me a few... I was told that I would need to have my pouch repaired. This time; a 3 step process and ileostomy for 9 months. My first surgery was 12/21/17.
like you; i was devastated but am also hopeful that after these 9 months my qualifying life will be drastically improved.
also like you; I am having issues with my appliances and leakage. Some days I have to change my bag twice due to leaking. The advice I got from my team of wound/ostomy nurses is
-change appliance at least every other day in the beginning
-practice the “double crusting” method which is apply stoma powder; pat with skin prep and repeat. Allow skin to dry completely before applying wafer (I prefer to use a 2 piece system)
-make sure you are using the right wafer... depending on the size of your stoma and how much it protrudes from your abdomen; a convex wafer could work better to prevent leakage
- also, the size of your stoma will determine the best size of wafer and flange... I was using 2 and 1/4 but after taking to Hollister rep today she said because my stoma is less than 1 inch I should be using a smaller flange which will help reduce leakage.
-I’ve found it really helpful to call the ostomy companies and ask for samples...we will all have an appliance and brand that will work better for our individual needs. Also; the aggressiveness of the wafer varies on product manufacturer....so it’s worth trying different brands
i hope some of this helps!! Just try to remember that it’s temporary and you are stronger than you think! I know in the moment it’s difficult to believe it... but have faith that it will get better.