UOAA Discussion Board

So far I've had my ileostomy for about 3 weeks and so far I'm having a really hard time emotionally dealing with it. I know I should be grateful that it is reversible, but I don't even want to leave my house in fear that people are going to look at me funny. I don't want to go to the store in case someone thinks I'm shoplifting. My stoma is too close to my incision so it doesn't always stick where the steri strips are which causes leakage. I am having to change my appliance way too often. The leakage makes me fear going out. Isn't there a spray adhesive that can help the wafer stick more securely? How do I pass the time without feeling sad and lonely? Like I said I know I shouldn't complain because this is reversible but it is still doing a number on my mental status.

HI Sstoner331,

Its hard not to feel paranoid if you don't feel secure about your appliance. Even though it is temporary, you can go and see a WOCN nurse and get some help finding a solution that will help with the leakage.

As far as people noticing, just think about all the times you have been in public, and how many people you looked at and thought "what is that thing they have under their shirt/pants??" I'm guessing that is just about never. I know when I am in airports I sometimes watch people around me and try and tell how many have ostomies. I know, weird hobby, but I have never seen anyone who looks like they have one, and I know where to look and what to look for. Out of hundreds, or thousands, you would think that there are some out there...

I swim on a Masters swim team, and my teammates and the girls in the shower with me know I have this. Although sometimes they forget (I keep my suit bottom on when showering - and no one notices that).

People are not nearly as observant as we think.

Hello, I also recently have gotten my ileostomy and am having quite the battle both mentally and physically just like yourself. Having an ileostomy is both a wonderful and tough thing to have as its such a major life change for the body but the good thing is that it will go away in time. I too suffer from leakage because my wound is so close to my stoma and to make things harder it also is an open wound so I have to clean and pack it with every leakage.Im terrified of seeing anybody but my immediate family because of my pouch and the visible difference in my physicality. With time I hope you heal and your loneliness is cured and you get to live your life without fear and loneliness. My only hope is that the process of having my ileostomy reversed will end my mental suffering.