Advice for short-gutted individuals - ostomy products, wraps, Stealth Belts, and daily challenges

Hi,

I'd like to talk to folks who are short-gutted and thus have high output. I'm interested in the ostomy products you recommend, experiences with wraps and Stealth Belts, and how you deal with regular day-to-day issues... like dating. I don't need TPN, and other than being short-gutted, I'm perfectly healthy and my life is very normal. I'm limited to what I can do physically only because of the constant ostomy bag emptying I have to do... so I'm curious how others deal with this day in and day out. Look forward to talking to you guys.

Thanks,

Bob

Hi W30bob.  You came to a good place to get answers to your ostomy related questions.  Many of us could write a book regarding the numerous trials and tribulations we might have experienced, avoided, hoped we never got close to and the mistakes we might've made.  I wouldn't invite anyone to read a book about being an ostomate.  I would, however, advise all ostomates to seek advice from those who've been there to make their lives as pleasant and care-free as possible.  You seem to be doing very well with your situation and I would advise you to do your very best to keep it that way and only change what's not working for you.  Keep us posted as to your success.

Respectfully,

Mike

Hi Mike,

Thanks for the warm intro! I see you're from Jersey... I was born and raised there myself... Go Devils! You're right about seeking out lessons learned and avoiding mistakes already made. I'm hoping you folks on here can help me out with that. A while back, I had some issues with the skin under my wafer (I call it a barrier, but you know what I mean) getting irritated. I sent pics to the folks at Hollister, and they immediately told me to go see a doctor. Yikes! So I sought out the best in wound care, ostomy nursing, and dermatology that Johns Hopkins and Georgetown Hospital in DC had to offer and stumped them all. I ended up getting it under control myself, but when you first run into a problem you have no experience with, the best thing to do is find someone with that experience. So for ostomy stuff... I'm so glad I found this group. Actual patient knowledge and experience should be WAAAAY better than book learning. Not knocking the Hopkins and Georgetown folks, but when you see that your problem is "out of their league," you tend to get a little concerned. The looks they give you when you stump them are priceless.

Looking forward to learning a lot about living in Ostomy Land from those of you on here that have "been there, done that".

Thanks again,

Bob

Hi Bob.  Though terrifying, your experience with the skin problem must have been most rewarding once you solved it.  Many of us have suffered from "rashes" from allergic reactions to adhesives, yeast infections from moisture or just rashes wanted to be there and drive us nuts.  I'm interested to know how you solved your problem.

Thank you,

Mike

Hi Mike,

Well, I solved it by changing my barrier every morning (instead of every third day) and using Betamethasone, a fairly harsh topical steroid. Funny thing was I bought the book "Abdominal Stomas and Their Disorders", a fantastic picture book of everything that could go wrong with the skin around a stoma, expecting to find a picture of my issue, but only found one pic of something that sort of looked like what I was experiencing. I seriously recommend the book to anyone having issues with the skin around the stoma, but it can be a bitch to find when you need it. There's a second edition out now that I borrowed from the local library to compare to my first edition and there is some more info in it, but it costs a fortune. I got lucky and found my book at a used bookstore online in the UK for 1. Folks selling it online in the states wanted 200+ for it........so I got lucky. Anyway, I attributed my skin issues to minor leakage around the barrier seal that occurred slowly over the 3-day period. Nothing ever leaked out of the barrier, it just leaked right around the stoma a bit. Over time it slowly spread until it was pretty ugly. Once I started changing the barrier daily and using the Beta, it cleared up pretty quickly.

Recently I've been dealing with a bit of contact dermatitis, a term that I learned is used for anything a dermatologist can't diagnose. I like seeing that stumped look on their face, so I went to a local dermatologist a few times to tease her a bit, knowing full well she couldn't help me. Hey, we gotta have fun where we can, right? I'm hesitant to try other ostomy systems when I'm having issues for fear of making it worse or having it get out of control, but I really do need to start trying other products than just the Hollister stuff I've used since day 1. When I'm not having any issues it's "out of sight, out of mind" and I don't remember to order samples. I've been experimenting with a whole variety of things on this dermatitis from organic honey (I know, there's no such thing), grape oil, aloe cuttings, etc. When things aren't too bad Flonase does a decent job keeping it in check, and if it gets worse the Beta beats it back. What seems to be working best right now, although it's only been a couple of barrier changes worth of evidence, is washing/wiping with a diluted chlorine water mix and then after putting on the stoma powder using 2 rounds of protective wipes (Cardinal Health Protective Barrier Wipes) instead of just 1 round. I got the idea for the chlorine because I noticed last year that when I swam in the pool regularly the dermatitis was practically non-existent. So the chlorine definitely helps, it's just tough to swim outside when it gets cold. Anyway, that seems to be working now, so I might be onto something. I take pics of every barrier change so I can judge progress over time.......as my memory really sucks these days, and being short gutted I can't remove my barrier to show the doc at any time other than the wee hours of the morning when things have slowed down. So I bring hi-res pics of my barrier changes to show them. What good fun! On a totally different subject, for any short gutters who read this..........I've also discovered a hydration trick for all those dealing with the ORS osmolarity bullshit, and have come up with some ORS recipes that actually taste awesome. But I won't bore you with that........I'll put that up in a separate post so others can read it and try it for themselves.

Ok, don't want to hog all the forum space with my ramblings. Good talking to you.

Regards,

Bob

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

So Bob, the only guy I heard of who did more experimenting than you was a New Jersey guy named Tom Edison.  He invented the light bulb and a few hundred other things but I think you could've accomplished more in less time than Tommy if you felt the need.  I think your efforts were remarkable; certainly the results were.  Your approach would make any scientist proud.  I'm considering your post to be a Lab Report and giving you and A+ and free lunch tomorrow.  Wow!

It seems everything is working for you now and that's great.  I totally disagree with "If it ain't broke don't fix it".  There's always room for improvement and your suggestion about trying other manufacturer's stuff is exactly what I would've suggested.  Tommy, also.  I use Convatec stuff but I have samples from others just in case.

Thanks so much for sharing your success story and I'll read all the "rambling" you provide.

Sincerely,

Mike

Hi Mike,

Yeah, I'm an engineer... so I do way too much thinking for my own good. But it does impress the heck out of the docs I see when I have everything all plotted up with tons of hi-res pictures. Gives them something to talk about at their weekly patient review meetings. I used to think the world of old Tommy Alva Edison. Went to his lab in Menlo Park on a field trip in 3rd grade... think that was 1973. It wasn't until I was in college that I learned what an SOB Edison was, stealing the majority of the ideas for his inventions from folks he employed. Tesla kicked his ass, despite the horrible way Edison treated him. But hey, it was a really cool field trip!!!

My problem with trying other stuff is that because I'm short gutted (and have liquid output all the time) the only time I can change my barrier is early in the morning before I eat breakfast and my bowel have slowed to a crawl. So if I spring a leak with one of the new things I'm trying, I have to lay low until the next morning when I can change it. That's not the end of the world when I'm home, but if I'm driving or away from home, it makes for a not-very-fun day. So as much as I want to try different things... I have to time it right from an activity standpoint and always plan on having a problem. But it's something I need to figure a way around... so I will. Just got some bigger fish to fry right now, which is another way of saying I'm good at procrastinating.

Thanks again for the replies!

Regards,

Bob

Still looking for anybody else on here that's short gutted. Are you telling me that even here on the Island of Misfit Toys... I'm a misfit? Just consider this a bump to put this back in circulation.

Regards,

Bob

Hi there! I am in the same boat. High output that sends me to the hospital every couple of months for dehydration, etc... My GI gave me a powder called cholestyramine. My output is strange; it starts going crazy around 6 pm and stops around 4 am. This powder worked for a while and now it's the same as before. Rice, bread, nothing helps. Anyway, it doesn't stop me though! Just irritating as all hell. Wish my GI's could experience the ordeal! There is an injection apparently that just came out but very, very expensive.

Hi Sobecool,

I just saw your post..........we need to get you hydrated. But I need to get an hour or two of shuteye or I'll fall over. So I'll shout back later today and we can chat. We'll get you right!

Regards,

Bob