2nd day of training for the Vegas 1/2 marathon and it hasn't started out so good. Last Sunday my pouch was really angry and today I was hoping for a good walk, but it didn't turn out so good. Started off the walk with that little pain under my belly button and then a burst of air released. I thought that might actually help and not cause me to have any issues while walking, but deep down I knew better. My pouch was cramping on and off and about half way back to the park it started leaking. It's really uncomfortable when it leaks...it itches and burns and all you want to do is get it cleaned off. I wasn't sure if it was just going to be that little bit or if my valve was open enough for it to continue spewing. It's not like I could just stop on the street corner and whip out my tube or clean it off without grossing everyone out, so I just kept shoving tissue to cover my stoma hole (thank goodness I had extra tissue with me) to keep as much away from my skin so it wouldn't get irritated too bad.
One of the girls offered to run back and grab my bag so I could replace my stoma cover (note to self..put covers in my bottle belt), but it wouldn't have done any good so I just bit the bullet and kept on trecking back at a pace I could handle (which was as fast as I could...lol). I made it back to the park and headed straight to the bathroom. It wasn't just a little leak...it wouldn't stop until I got the catheter in. Thank goodness I carry a tube & lube with me and my friend went to my car to get my covers (Thank you Angelique).
Thank goodness I don't freak out or get upset when this happens, but now I know more than ever that I have a valve problem. Twice in 9 months since my surgery is not a good sign. I've had air escaping since early on and I could handle that, but the leaking is definitely a concern. It is supposed to be a "continent" ostomy after all. I have noticed that it follows a pattern...when I am exerting myself. The 1st time was when I was on a hike...see the pattern?
I should have my valve checked and I promised myself I would if it happened again so tomorrow I will make an appointment to head to lovely La Jolla and see what is going on. Hopefully it will show nothing serious and something that could just resolve itself. If not I will tackle this just like I tackle everything else in my life, with strength & courage. It's funny I just bought this ring that was engraved with the word Courage on it and a bunch of little sayings and one of the sayings is "never, never, never give up" and that' exactly what I plan to do!
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Hi Sue...this is nervewracking I understand...let me know what Dr W says. pouchitis can result in pouch leakage for some unless you've been scoped and it's clear. sometimes scope is clean and you can still have a bit of pouchitis. And, until it's resolved, maybe place a very small size disposable ostomy bag over the stoma for your runs and/or hikes. it can peel off easy for interbation and be tossed.
ReplyDeleteLet me know if you want me to go with you. J