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AboutHi guys! It's July 2019 and 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 you're 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 time........so 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 there was any permanent damage to my liver. Hopefully I'll never have to deal with that crap ever again. Hopefully. So I've now got just enough intestine left to support my 185 lb physique, and no sign of Crohn's since my operation almost 5 years ago. So I'm now in perfect health, but have an external bowel taped to my abdomen. Wonderful. I have the occasional skin issue around the stoma, but nothing really noteworthy regarding the ostomy. My biggest issue is my high output and how that affects what physical activities I can and cannot do. Time heals all wounds, but I don't think it will help here. We'll see.
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 it........so 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 well......it 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 on here. But it would be nice to have a partner with common issues, so if you want to chat don't hesitate to drop me a line.
Thanks for the read.
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