While I've only had my ileostomy for about six weeks now, so am far from being an expert, it really hasn't been as bad as I imagined. Originally, the ostomy was presented to me as a worst-case scenario if my surgery went poorly. So when surgical complications piled up and I did need the ileostomy after all, that's how I saw it. Worst-case. Clearly, there could have been many worse surgical outcomes than this. My intestines could have been beyond saving at all and I may have needed a permanent ostomy. I could have died. That would be worse. All in all, having this bag isn't all that bad.
Admittedly, the first week home was rough. I was changing the bag just like I was taught in the hospital, but I was getting leaks in the middle of the night. So while moving around was still painful and difficult I'd be up but groggy in the middle of the night trying to put on a new bag and cleaning up all the poop that I leaked out in the bed and the floor on the way to the bathroom. I'll be honest - there were many tears.
In retrospect I should have called the ostomy nurse when I started having problems, but I had a recheck appointment scheduled later in the week, so I just suffered until then. My advice if you are a new ostomate - don't just suffer. These nurses who specialize in ostomy care are great. They have solutions. Go get their help.
After my surgical recheck I explained my leaking problems and they got me in to see an ostomy nurse right then. She didn't have enough of a schedule opening to do a lot of teaching with me, but she looked at my bag (the seal of which was just on the border of leaking right then despite it being a new bag I'd put on the night before) so she could see my problem clearly. She got me a different kind of bag the had a more rigid and curved area where it attaches. I apologize that I don't have all the terminology and lingo down yet. It might be what I've seen referred to as a convex bag? She also wiped on some sort of sticky skin protecting liquid and added an additional sort of jelly barrier ring and sent me home with supplies to do the same. I haven't had a leak since. Even though it's been more than four weeks leak-free, I still have some paranoia about it and still sleep on a towel - just in case.
A week later, I got even more refined help with my scheduled ostomy checkup - including a support belt/corset thing that holds the bag tight against me and makes longer walks much more comfortable. Walks have helped me start to regain my strength so this has been wonderful. And I wouldn't have known about any of these options without those great nurses.
While I certainly won't miss my ileostomy bag after I have my reversal surgery, after that rough first week home, it hasn't been bad. Some things have been interesting - seeing how my innards work in a new way.
Somewhat off topic - I have thought to myself, as all these crazy bathroom laws show up around the country, how happy I am to live in California. Sometimes, if a toilet isn't very big, I have difficulty emptying the bag sitting down and I have to stand up. I wonder what would happen to me if someone saw my feet under a stall pointed the wrong way as I emptied my bag (it's mainly liquid and sounds that way). There are so many reasons not to judge or make assumptions about others.
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