Ostomy questions

[grams6167]

Well I have a new problem. It seems my stoma is getting recessed instead of protruding. It's been 4 months since my surgery. But I wasn't expecting this change. Don't know what kind of appliances to use for this. Would appreciate any help or advice I can get. Thank you so much.

[steiconi]

Convex wafers can help.

Do you have any idea why it's receding?

[steiconi]

Hellooooo! Grams?
you know, if you ask a question, then never follow up, people will stop responding to you. That may be happening here...

[EDS]

Hello.
I am a new permanent colostomy patient.
Within the last two months since surgery.
Certainly as I am new and still figuring this out, I have a question to others in the same life situation.
After my still superficial research of existing appliances on the market, is it just me or does the design of all these bags and pouches seem utterly ridiculous? Seemingly designed by anyone but actual colostomy patients?
The design of pouches and the skin adhesive irritation problems seems and is problematic to me. But, I'm thinking, easily rectified w some design ideas from actual wearers. In but two months, I've come up w at least three designs myself all without skin adhesives, non adhesive design.
I do not, and did not want to have to design my own system for out in public, or just at home or for sleeping overnite where I need to let my stoma breathe and given a break from the adhesive dilemma.
How come it seems that I only find one system that makes any design sense to me, from Nu-Hope.com, I believe.
My real question, are there any non adhesive belt type systems designed that actually have design intelligence from actual wearers. Designs that seem more than these rudimentary systems?
And if so, would someone be kind enough to direct me to some of them. If not, please excuse my ignorance as I'm still figuring this out. I am wondering if I am on my own to bring one of my designs to fruition for my own enduring comfort as I'm having to endure this issue from now on.
Thank you for any positive feedback.

[Bob Webtech]

Hi EDS,

Regarding your comment about "utterly ridiculous" product design, please understand that the major producers of ostomy pouching systems have been making them for over 50 years. So it's a very mature industry, and many ostomates have been involved in designing those products.

It's true that, as far as I know, there's only one non-adhesive system on the market. That system is sold currently by Nu-Hope - see http://www.nu-hope.com/NHnonAdhesive.pdf - although they didn't design it. Nu-Hope purchased that product line several years ago from another company called VPI who, I believe, had purchased it from still another company years earlier. That non-adhesive system is considered a specialty product which is used by only a small number of ostomates.

The obvious reason why so few people use the non-adhesive system is that nearly all ostomates can use one of the many available products with adhesive barrier wafers. There are enough variations between the adhesive barrier materials in different brands and models that most ostomates can find one that's friendly to their skin. It's also worth noting that in some cases, an allergy is really to a tape border that surrounds an adhesive wafer, rather than the adhesive wafer itself. In that case, the solution is simply to use a variant of the product without the tape border.

Regarding variations in adhesive barrier materials, there's an interesting article called "Karaya's Healing Power" in the latest issue of our magazine The Phoenix - see list of articles in current issue at https://phoenixuoaa.org/current-issue/ - The article describes a case where pouches with "Karaya" barrier material (a material introduced by Hollister 50 years ago) solved a difficult skin problem. The article states that Karaya can be "great for individuals with skin problems or sensitivity to other skin barriers" and it quotes a Hollister representative as saying "They are here to stay."

Hollister's Karaya material has been around for 50 years. Other products with adhesive barrier materials that seem different from most include Coloplast's Sensura Mio and Cymed Microskin.

Have you tried visiting an ostomy nurse (WOC Nurse) to be evaluated for a pouching system that would work well for you? You can locate a WOC nurse near you at http://www.wocn.org/?page=Nurse_Referral

As a final note, if you develop a pouching system of your own design, and might then wish to sell it to other people, please be aware that this discussion board has a strict rule against commercial posting (e.g., posting about a product by anybody with a financial interest in the product), so you wouldn't be able to promote it by posting about it here.

[EDS]

Thanks for your reply Bob.

When one thinks about all the technological advances in the world today, and even in the Biomedical fields, to think that there is not a simple system developed as of yet that is more intelligent in design is staggering to me.

No one can tell me that there are not better designs that can be achieved.

Here are but some elementary problems that are poorly addressed in the products that I see on the market presently:
1) I am a man w a hairy belly, and not only does the adhesive wafer removal create very uncomfortable pulling, added along w the irritation having to shave the area. Adhesive on the skin and the removal of such being the problem primarily.
2) Even though there are mini or small area pouches, caps or whathaveyou, the basic ones hang down w gravity and the length of the bag design and get in the way. If there is any matter in the bag, it creates uncomfortable downward pull on the wafer, etc. It also by nature of the design gets in the way of urinating.
3) I find it aggrivating and absurd that every time a pouch is needing to be emptied, (and I know there are one use pouches), that the designs make one get their fingers/hands all dirty w fecal matter.
Jesus, has no one even been competent enough to initiate a simplistic positive shutoff type of plastic valve petcock system into these bags to alleviate the need to get our fingers into mess every time we empty?

These are some of my thoughts, but not an exhaustive list of some of the issues w present designs.

As for promoting a new design for individual monetary advancement, it is not my intention in any manner. My only intention is to have a system that I can personally live w for the rest of my years, that is and can be almost a thoughtless daily routine. To build a business from design itellectual property is not even on my mind.

My idea just right off the top of my head, and please excuse my possible nieveity as they may already exist, would be to have an online braintrust of colostomy patients in a new designs forum where these seemingly easily solveable issues could be resolved w smart design ideas being bounced around by the same patients.

There is just no one that could tell me w a straight face, that a simplistic pouch cannot be designed where my fingers don't have to get involved and dirty every time a bag is emptied.

Though I have initially thought of a couple of designs myself in my short time as a patient, I'm sure there are people w greater intellectual capacity than myself w possibly greater designs.

We can design cars that tell us when driving that a tire is low on air, or a car is getting to close on the side, or if when backing up that a sensor tells us that we are getting too close to an object. Among the world of technological advancements, cannot we design a few simplistic pouching systems that are more intelligent and advanced that are easily lived with and almost a thoughtless daily/weekly routine for living w these conditions?

I would think so, and if there is a forum to discuss new age designs, someone please let me know, as I would certainly be an engaged member of said forum.

Thanks.
EDS

[Mysticobra]

The only part I can comment on is the way you empty a bag. I have a permanent ileo. Which of course is different. But using a valve type system wouldn't work. It would immediately get clogged. My stool goes from a solid to all liquid. Depends on what I eat.
Personally. I don't have a problem with the design of things. I'm not hairy and the small amount of hair I have doesn't get pulled as I use an adhesive releaser spray that makes the whole wafer drop right off. You may want to try that. Worth it's weight in gold.
I certainly would not want to have had one 50-60 years ago. I think the array of products out there is almost staggering. We have so much to chose from. I bet a half century ago product was not advanced as it is now. You may think it's not advanced. But I remember as a young boy my grandmother having one in the late 60's. She was miserable.

[Mara]

..... But I remember as a young boy my grandmother having one in the late 60's. She was miserable.

Been there, did that....yes, the good old rubber pouch that was cemented on....

I very rarely get my fingers dirty when I empty my pouch - only if I am being really careless....

[Mysticobra]

Yes. I can't imagine how bad that must have been.
We need some history in here.
That would be an interesting topic. I would be interested anyways.
It would tell us how good we have it with what we have because if I can do it and it's this simple. Anyone can. Back then I don't think it was as simple. But I may be wrong.
Only time I get sloppy is when I'm half asleep or in a hurry.
Can't be in a hurry.
That's why we have soap and water.
I think I use more toilet paper now than when I had a colon. Lol.
Thank goodness most of my emptying is at work at their expense.

[Mara]

Yes. I can't imagine how bad that must have been.....

Well, I guess your gran was at least in her 50's or so at the time.....I was in my late teens and became healthy after my surgery - having had ulcerative colitis for ten years or so...so I was a happy camper....went to college, worked, lived my life...no internet so just dealt with any problems on my own...

[Mysticobra]

She was in her early seventies.
That was back when no one explained much. Not my family anyways.
I found out the hard way
That's life.
There was alot going on at the time. My grandfather died and she was living with her daughter. My aunt of course.
Good to hear you had a good experience. I was what they say now. A tween back then. Lol.
Getting informed through forums and sites like this now is such a huge advantage.
Alot of good people and I would have never suspected so many. It's almost normal!

[steiconi]

when I'm at home, I usually put on a new bag, then empty and clean the old one. My fingers don't get so messy!

I think EDS has good points. When you read the surveys at the top of the forum page (or talk to a surgeon), you realize that people working in the field don't have a clue what it's like to have an ostomy.

[Mysticobra]

when I'm at home, I usually put on a new bag, then empty and clean the old one. My fingers don't get so messy!

I think EDS has good points. When you read the surveys at the top of the forum page (or talk to a surgeon), you realize that people working in the field don't have a clue what it's like to have an ostomy.

I have a good surgeon.
She has done all my after care. Still does after 3 years.
Never went back to a gastro Dr. She didn't want me to. Or gave me the choice.
From removal. To a j pouch. To the removal of that to the end ileo.
I've taught her alot.
It's up to us.
Of course they don't and will never know what it's like.
I wouldn't wish this on anyone.
Nobody.
And yes. He does make some very good intelligent points.

[EDS]

Yes, I don't want to seem ignorant, negative or too critical, and would have to agree that the present designs are probably a monumental advance in design from 50 years ago.

One of my main issues (other than the absolute detesting of putting adhesive on my skin as an attachment system), is the length of the daily wear pouch, and how far it hangs down. Annoys me immensely.

The way I look at it from my short time w an ostomy, is that It seems like there are basically three different daily pouch situations that I comprehend as addressable:
1) Going to work or in public, where obviously a foolproof pouch is needed.
2) When one gets home, and like myself, would like to remove the pouch letting stoma and skin around stoma breathe.
3) And, for overnite sleeping, where for me anyway, the pouching system is uncomfortable when I toss and turn in bed thru the nite.

I would like a non adhesive system designed for the different daily dynamics, and easily interchangable to the part of my day when and where I'm at in my day.

Once one glues on a wafer, one is now unable to make the quick changes, as the on and off pulling along w the amount of wafers to do so would make doing so undoable.

I'm wondering why from what I'm told, that the belt pressure silicone ring system is only worn by a small number of people w ostomys.
Seems to me that this system type design is on the right track. As one could wear a certain type pouch at work, come home and remove and let skin and stoma breathe, and could reattach a small cap type cover for sleeping.
Pasting a wafer on, is a 3-4 day or longer situation, which inhibits the skin from breathing and is irritating.

I wouldn't mind wearing a pouch that hangs down the 8 or 10 inches or whatever for out in public, if When I got home I could change to a more user friendly cap or cover, or just airing out, without the adhesive or wafer.

Just seems to me that once one glues on a pouch, that there are different situational dynamics that pouch designs should take into consideration. Instead of, oh, okay now that I just glued this bag to my skin, it'll have to stay like this for days until the next bag is ready to be pasted on.

Just doesn't seem to far fetched to design an interchangeable system designed on the way we live throughout a typical day. Which for me might include these wants or needs, a pouch for out in public, a completely open and bare skin and stoma once I got home, and a small cap or cover for when I go to bed.

Perhaps a bit of venting out of a little bit of frustration. Actually, more hoping than venting. Does anyone else think that a system like this could be developed w a little bit of ingenuity?
Does anyone else think as I do that there might be the three different types of wearing dynamics within a typical day, pouch on, off, and protective cover? That the typical adhesive used negates these to a certain degree?

Thanks
EDS

[Mara]

.....2) When one gets home, and like myself, would like to remove the pouch letting stoma and skin around stoma breathe....

EDS, I think you have a colostomy....so maybe what you said above would be fine for you but as someone who has an ileostomy which has unscheduled, shall we say, output that is not workable.

Have you looked into the possibility of irrigation? That, from what I have read since people with ileostomies are not candidates, would fit your requirements of going without a pouch.....