Meet & talk to fellow OstoMates 20,178 members


Hi guys! So here I am on the Island of Misfit Toys and I fit right in. It's pretty cool to find a group of like minded folks that I can be myself around and ask anything about this wacky world of ostomates we're all part of. Sort of relaxing and calming at the same time to know your among friends. I have to keep reminding myself this is an ostomy site and not a Crohn's or SBS site, but from what I've read so far it seems that every problem imaginable as relates to ostomies has been covered by someone on here at some point in it appears to be a treasure trove of knowledge and experience.

My story is probably pretty typical.....misdiagnosed with UC at age 25, then they changed it to Crohns before my first operation, which was back in 1994. They did a subtotal colectomy and small bowel resection. They cut my abdomen from stem to stern, but once I healed things were good.......for awhile. Then, as is typical, my Crohns came roaring back to make life not much fun anymore. Second operation was another small bowel resection, and that got me from 2002 to 2014. Then came the whopper of an operation where I opened my eyes in the ECU to find a bag on my abs and was informed I was now short gutted. Did the TPN thing for almost a year, worked with a great dietician and successfully weaned off before my liver got damaged. Hopefully I'll never have to deal with that crap ever again. Hopefully. But it did what it was supposed to do and I've got just enough intestine left to support my 180 lb physique. Now I'm in perfect health working on getting my life back to normal.......or as normal as can be with my new "appliance". Love that term.....makes me think I have a Maytag washer strapped to my side.

I guess if there's a "plus" side to all this it's that I can now eat whatever I want in any quantity I want and not gain a pound, much to the chagrin of my chubby friends. Also seems cholesterol can't stick to me in any manner and I don't readily absorb fat. McDonalds Double Cheeseburgers and Large Fries here I come!! Hydration was my biggest challenge, but I experimented continuously to figure out what would work and what would not. I'm now at the point where I fully understand what my bowels semi-permeable membrane sodium/glucose gradient is and how to optimize for no more hydration issues.

Now it took me a while to gain confidence in having an adhesive barrier stay stuck to me when I'm working out, in the pool or outside sweating my butt off...but so far so good. I really need to look into other companies products and optimize for my lifestyle, but I tend to procrastinate on that since my current Hollister stuff is working well enough. Will never get used to having a bag of poop on my hip all the time, but after almost 5 years since my surgery I'm finally accepting it's part of me now and will have to deal with it. Was waking up there every morning for the longest time hoping this was all just a bad dream....but I've realized it's not. Oh could always be worse.

I'm looking to communicate with others who have an ostomy, and if anyone else is short gutted I'd like to talk about that as well. This site appears to be a storehouse of knowledge, so I'm grateful I've found it and you guys. As for the "relationship" part of it.....I don't think it's practical if we don't live close, so I'm not getting my hopes up. But you never know.
Thanks for the read.


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