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What Would Your Dream Ostomy Bag Be Like?

Posted: Tue Oct 02, 2018 9:42 pm

What would your dream ostomy bag be like, but within confines of possibilities?

 

Mine would be....clear around my stoma, opaque halfway down and all the way to the bottom. So no one sees my feces but I can keep an eye on my stoma. Also one with the Velcro tick and roll closure but that somehow doesn't end up getting poo on my hands or the end of the spout part/splashing to places. Also one that doesn't blow up like a balloon or get all vacuum packed.

Posted: Wed Oct 03, 2018 12:13 am

Great question...well for starters, I don't think I need to be looking at my poop, although let's be honest here, everyone has been curious about what that is floating around in their bag of poop.  So I'd be good with opaque but maybe with an inch or so peek hole, cause I totally agree with keeping an eye on the little bugger to help determine what's going on sometimes. Skin colored, I prefer the hard plastic clips as opposed to the tuck and roll Velcro, especially after swimming or a shower, I find they dry easier, and it doesn't piddle out through my pants making it look like I pissed myself to boot.  Something that is fairly quiet in terms of it's crinkle factor, mind you my current Hollister's are pretty quiet .  Now on the topic of ventilation...I don't like the little charcoal vents I've seen in some, but if there was some other way to magically snuff out the gas and air, yep sign me up for the bag.  It's only.been an issue recently for some reason I'm reascting to these magic potions my naturopath has me on, the good far outweighs the bad though, so I just burp em where I sit fit.  Other than that, I think the size of most is appropriate, any smaller you have to go more, any bigger you have a giant bag of shit looking about in your pants. 

 

It's such a funny question I can't brbelie I've never asked myself before.  I feel like I'm very much thinking inside the box on it though, as I'd bet there are some crazy ideas that could be brought forward.

I wondered about a more horizontal pouch that goes across your waist, but figured logistics and gravity would.make it tricky.

 

Anyway, would love to hear some other ideas!

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Posted: Wed Oct 03, 2018 8:20 am

What naturopath stuff do you do?

Posted: Wed Oct 03, 2018 2:47 pm

The perfect bag would be no bag at all! I actually asked my Colorectal surgeon why there has not been more progress i technology for Ostomies. He said until one that researches and designs is affected themselves, it probably won’t happen. My thoughts are: why is a devise not implanted into the colon or what ever you have left after surgery that has a valve on it. When we are ready and have the time and proper place, we can empty by just turning the valve. That way no gas escapes, no poop escapes, etc. just like having a sphincter. I have always been able to chose when I had a BM sometimes waiting hours in order to have the comforts of home. Sometimes not but unless you hav UC or the like, you had some control.No bags maybe just a cap to cover and protect. How does that sound for getting your life back? Lol

Posted: Wed Oct 03, 2018 2:50 pm

Hello Gemd.  I like your question and it's not one that I have come across before. I also liked your answers to your own question so I'll not repeat them as my own, although they do ring true with me as well. Whenever I feel that the equipmwnt is not quite what I want, I tend to have a go at producing the goods myself - even if it is only in prototype format. In the past, I have had lots of problems with wafers not sticking properly, so I made my own baseplates with two belts to keep them in place. This works by sticking manufacturers' appliances to my own baseplates, which makes them last a very long time. Another thing I had problems with was pancaking. However, I resolved this by making one of my baseplates so that it accomodated a 90 degree plastic wastepipe bend, which funnelled the output into the appliance without it sticking to my stoma or surround. The device is a bit cumbersome to wear, other than during and after irrigation but, since I've been using these methods, I have had few difficulties so it would seem that I have made my own 'dream' appliances.

Best wishes

Bill 

Posted: Sat Oct 06, 2018 1:52 am
Gemd wrote:

What naturopath stuff do you do?


I've been seeing a naturopath for the past few years, but not once while I was in the trenchst fighting uc.  Doh!

So I've done a few different vega tests determining out of 200 foods which I'm more reacrive to.  More than anything it determined I had crazy leaky gut and candida, all without any noticeable symptoms...it was just my normal.  He gave me some excellent probiotics super hmf....but that was based on my body and how it would react to that specific probiotic.  Additionally he gave me these 2 phenolic extracts, said magic potions.  So with these I didn't notice any physical feeling of difference, but I went from never eating salads, nuts and popcorns to eating anything I want.  It changes and rebalances all the good bacteria and got rid of the bad ( candida and helped heal the leaky gut), resulting in proper digestion. Crazy!

Since then I had my proctectomy surgery and decided I would check in and make sure everything was rebalanced post op for optimal healing digestion And nutrition.  He prescribed the same probiotic, but a pair of different drops and "green light" which looks like swamp water, tastes like something fermented, but not good, and another called daily defend.  

 

So post op I've been back to normal diet with no restrictions, great digestion etc, I was just going for optimal, now this time I reacted to something from that whole cocktail.  Physically felt the same, no more energy,or less, great digestion, but gave me gas like a hot air balloon.  Like stupid amounts.  So we had to stop that regiment, retest and see what else I would respond to best.  So I'm on a different regiment of drops and a slightly different probiotic.   Dropped the green light as I think it might be party resposibres for the ballooning, and it has made a difference, but I liked it better when inwasnt ballooning.

 

The last thing he's given me was last year we dabbled with the vitamin B12 world.  Took pills for while and then self administered B12 injections over 3 months, And as much as I wanted to believe they made a difference in my energy level, they didn't.  So we stopped that.  

 

Thats what I recall for the most part.  Hope that wasn't too much!  Look into the vega testing if you have the chance.

 

Posted: Sat Oct 06, 2018 4:54 pm

I am lucky my dream bag exists. My requirements for a bag are mini sized(even though I have an ileostomy it is low output and my ostomy is low on my stomach so a full sized bag is just too big) , drainable with lock and roll closure, convex wafer, opaque, and one piece, and I do like to look at my stoma so a window for that. Marlen makes a bag that is literally perfect for me. Marlen has great bags especially if you have difficult stomas.

Posted: Sun Oct 07, 2018 1:51 am
Puppyluv56 wrote:

The perfect bag would be no bag at all! I actually asked my Colorectal surgeon why there has not been more progress i technology for Ostomies. He said until one that researches and designs is affected themselves, it probably won’t happen. My thoughts are: why is a devise not implanted into the colon or what ever you have left after surgery that has a valve on it. When we are ready and have the time and proper place, we can empty by just turning the valve. That way no gas escapes, no poop escapes, etc. just like having a sphincter. I have always been able to chose when I had a BM sometimes waiting hours in order to have the comforts of home. Sometimes not but unless you hav UC or the like, you had some control.No bags maybe just a cap to cover and protect. How does that sound for getting your life back? Lol

A great and emminently feasable idea Puppyluv. Now all that's needed is someone in the medical field to develop it. But first they need to be made aware, so how about touting the idea around the R&D departments to see if any of them would take it on as a project. I recall reading on here some time ago about a similar device which had been developed - but I cannot seem to find it now.

Best wishes

Bill

Posted: Mon Oct 08, 2018 9:48 am

Bill, I may just take that on! I was in the medical field and my son is a physician at the Institute of Health in Washington DC. He has UC as does my Husband so it is not so far out that a devise would be in his future. He is in Cancer research at this time! Working in an Oncology practice, I know many Reps from pharmacy and medical supply companies that may be able to help lead the way as well! I would even write the grants!

I had already talked to my Colorectal Surgeon about this! 

Who knows where it could lead! 

Puppyluv

Posted: Tue Oct 09, 2018 1:33 am

The world needs pioneers like you, otherwise most of us might now be dead. Lets hope someone listens and takes it on as a project. 

Best wishes Bill

Posted: Tue Oct 09, 2018 4:18 pm

The "Dream bag" you.describe already exist!  Exactly has you drscribe.them.They.are made.by a company called " Coloplast" I use them, they're great!  Check them out on the Web.

Posted: Tue Oct 09, 2018 5:43 pm

I already have mine, but to say "Dream Bag" is a stretch!  LOL! I initally wore the one piece, see thru, drainage kind. I hated it with a passion.  Then someone turned me on to the 2 piece, and I never looked back. NO draining, NO seeing poop, SO easy! Just detach, and toss in the bag the set comes in, and snap on a clean one, done.  Smile

Posted: Wed Oct 10, 2018 12:59 am
Puppyluv56 wrote:

Bill, I may just take that on! I was in the medical field and my son is a physician at the Institute of Health in Washington DC. He has UC as does my Husband so it is not so far out that a devise would be in his future. He is in Cancer research at this time! Working in an Oncology practice, I know many Reps from pharmacy and medical supply companies that may be able to help lead the way as well! I would even write the grants!

I had already talked to my Colorectal Surgeon about this! 

Who knows where it could lead! 

Puppyluv

Please keep us posted on this Puppyluv! We can put a man on the moon, but ..........

Posted: Wed Oct 10, 2018 8:48 am

My dream flange would be one that never leaks--which happens a lot. Changing flanges every couple days is tearing up my skin.

My dream pouch would be one you could drain with no odor. This is huge. If I am at someone's house, I cannot drain the pouch because the odor is horrible and I do not want anyone using the room for a long time. It is so embarassing. I have done research for a room spray I could keep in my purse but have not found one that masks the odor.

Posted: Wed Oct 10, 2018 4:36 pm

Cymed one piece with velcro closure. Yeah I know they were making defective bags for awhile, but now all is corrected and good. Cymed sent me 4 boxes to replace boxes with defective lot numbers, and were very nice. bags are great again, no leaks!! I have a very scarred tummy and they stick really well to skin. I do use an Eakin ring also. On Medicare so I have to make everything count. Cymed is back with great quality again. Al

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