Exploring Ways to Respectfully Engage with Ostomy Patients

Thanks everyone for the feedback a few things from the comments

I consider myself pretty real and motivated, not trying to save the world, my background is in materials science (PhD was on how things stick underwater), always been super inquisitive and love to learn.  

1.) I will run through the forum and read as much as I can as those suggested.  I know questions will arise from that.  

2.) I work with student groups all the time on engineering projects - a challenge I had them make was creating an empathy suit so we as associates could experience living with an ostomate.  Its not the full deal - but to do the Mel Gibson approach, I think it needs some level of uncontrolled experiences or a way to create the experience of how a partner may experience another partners pregnancy experience.  I keep thinking that if I wanted that experience, I need to dial in a level interaction where someone else controls the situations.  

3.) The product feedback is something I am taking inventory with - The trick is how to translate them over into meaningful action.  

Lastly I know I am one person, doing my best like the rest of us. It's worth a shot, perhaps with some tenacity we can make some headway. 

Put a skin irritant on some wafers and ask for volunteers to wear them. I think solutions would be found quicker. 😉

Battery acid comes to mind!

Dang, I was thinking about the histamine they use as the guide during allergy testing 😳

Naw..too lame..😆. Get right to the skin burning and peeling with acid. Quick stuff. Fast acting. No script needed. 😋

My Ostomy Journey: Bruce | Hollister

Wow... this is one tough crowd! All I can say, Adrian, is I hope you don't think all ostomates are as mean-spirited as many of those who have responded to you. I think you can sense a bit of frustration with many on here, and it comes from a lot of different areas. As ostomates, we feel a bit isolated in terms of how the medical community thinks and deals with us. I know I'm talking in generalizations, but it is what it is. Many ostomates became ostomates without much, if any, warning and were thrust into a world we didn't understand or really want to. Many had no preparation or knowledge of what just happened to them and just found a plastic bag full of crap taped to their abdomen. It's quite an emotional shock, not to mention a physical one, for those thrust into the ostomate world, and support had to be sought, as it was not provided. Most of us were just shown how to apply a barrier and bag a time or two, handed some supplies, and sent home. And while many of those that did/do support are very nice well-intentioned people... at 5:00 PM they go home and we still have our problems to deal with. All I'm trying to say is you sort of unknowingly stepped into a hornet's nest of sorts and I'm trying to offer an explanation for the rather harsh welcome you just received. We really do appreciate and welcome any help we can get... from anyone willing to listen.

I don't know if you're legit or not, but I'll give you the benefit of the doubt... or innocent until proven guilty as we like to say, so I applaud your efforts to reach out and try to help. And I like your approach... you really should spend a few days shadowing an ostomate or two to better understand some of the issues we face. If you're located near me, you're more than welcome to pack a bag and come swing by for a couple of days. I'm pretty sure you'll leave here with some of the info you seek. I'm sure others would make you the same offer, just depends on where you're located and how far you want to travel. But my offer stands if you can get here!

I think if you read between the anger-filled lines you've already been given some good ideas to run to ground. I for one second the idea of colored bags. Any color would be better than 'Medical-Issue Caucasian', which never matches anyone's skin tone. Not to mention it screams "Look at me... I have a medical problem". I think a black bag would be way more fashion-conscious and look a lot more like other waist-worn pouches. And I could easily slap on a Nike swoosh or Adidas logo and most would never even know it's a shitbag. So if a rainbow of colors isn't feasible... just make it in black... like they have over in the UK. Quality Control was also mentioned... that's a serious gripe from me especially. I and others have had problems with leaky bags and reduced bag thickness in high-stress areas... pretty simple engineering problems to solve if QC can't get their act together. I could go on and on, but the bottom line is every ostomate is different, yet pretty much every barrier and bag is the same. Not exactly, but you know what I mean. Skin irritation is a big deal for many... so is high output. Sure would be nice if your bags had a micro-scale dehydrator attached to them to evaporate liquid from the bag to reduce output. Nuclear powered, of course. Let me know when you need a Guinea Pig to try the prototype out on. Larger bags for nighttime or high output without a funnel tip could be useful for many, as could lower prices for all ostomy products. You sure have a lot to work on!

Just let me know when I should get the guest bedroom cleaned up for ya!

;O)

It is sad that some of us may come over as mean-spirited.

For those of us who put ourselves forward for clinical trials, we have a very open spirit—one of hope, willingness to work as a team member, and an individual with a very open spirit of engagement with medtech. We are also open to the endeavors being advanced for the benefit of those folk who follow us, and we give unconditionally our trust in the belief that innovation has a very valid part in product development.

Adrian,

I am a UK ileostomate: I use Salts Confidence B bags [in white and in black - in all of the three sizes within the product range - drainable versions].

Pertinent to your own interest in the 'stickability' of adhesive product wafers, I have an observation for you:

It has come to my notice—over the past few months in particular—that there is a certain amount of 'spot' residue which is proving to be very challenging in its adherence to the WC pan... It has only come to my attention lately [obviously one manages, changes, peels, cleans using Salts adhesive remover—and always aims for 100% of product residue to be put into the disposal bag during the pouch change].

You may be surprised to know that usual lavatory cleaners, including limescale removal products, still are poorly engaging with the 'escaped' bits of backing plate.

Given your knowledge of chemistry and your particular interest... could you recommend a pertinent solution?

[Currently, the only solution I am finding works is a toxic mix of chemicals... spray adhesive remover and Vim scouring powder and limescale remover—mixed together and applied with quite a firm brush... BUT as one has a septic tank, this is hardly the ideal solution to keep one's white bathroom ceramics in a smooth, and clinically clean condition!

Thank you for your interest... Please might you observe your thoughts... I would be very grateful to learn what might work well to un-fix the excellent adhesion under continually flushing within the bathroom environment.

Thank you so much.

Incidentally, I believe Holisister to be one of the Nordic brands—so I guess you may be resident within Sweden or Norway?

As Bob 30 has kindly offered a shadowing stay... I will look forward to hearing more of your feedback engagement and trust that your interaction within the Forum is a fruitful one.

Best wishes,

Keep the product development ever cutting edge.

Jayne

UK

Hi Adrian,

By its very nature, having an ostomy is an extremely intimate experience. I think the majority of people tend to share a lot more details about the day-to-day management of their situations and how having a stoma (or two) affects their lives when they are doing so anonymously. I know I do. That's why this forum is so perfect for us. We feel protected and safe here, while still being able to give and receive emotional and practical support on so many levels.

Interacting respectfully with an ostomate would require a strong degree of trust, delicacy, discretion, and kindness; not too clinical, but not too personal either. (I thought your tone was very respectful when you wrote this post, so I believe you wouldn't embarrass or inadvertently offend anyone.) At the same time, there's that all-important issue of confidentiality - how you would guarantee that a person wouldn't end up in a TikTok video or on the Facebook platform, etc. The legalities of that one would need to be addressed in an iron-clad contract, protecting both the ostomate and Hollister.

Even if you did manage to shadow various people for a period of time, would that give you enough of a meaningful, representative cross-section of the population of ostomates? My instinct is that you'd get much better information right here on the "Meet an Ostomate" forum. As someone else mentioned, you could also post your questions, and individuals could answer them via Private Message to you, while still retaining their anonymity. 

I commend you for wanting to understand our individual journeys and also to improve our well-being with innovative improvements to your products and services. I used to use Hollister but switched to Convatec because their products worked better for me. I especially love the rollable rim on the skin barrier that you expand with your fingers before placement. Within minutes, the material automatically begins to hug the stoma snugly, with no gaps that could cause leaks. No measuring or cutting required. 

Welcome aboard! I hope you will continue to receive valuable, honest feedback from the fine folks here.

M
xo

I’m so sorry to hear you’re having rashes from Eakin Seals…I have been using them for 20 years without issue.  To me, they are a godsend.  However, I did have a rash for a week when  I used a different skin protecting wipe outside the boundary of the seal where the bag meets the skin.  

Thanks. I thought I replied to you on this.

This kind of thing happens. "It worked for me...may not for you."

By the way I see it though, most people using this had issues like me.

We try being unbiased. But when a product is mentioned that causes issues, a warning or alert should be presented.

Noted.

I liked the Eakin. Thought biological was the culprit. Clearly, 1 month after skin treatment, I was wrong.

Consider medication intake and product when skin turns red, weeping. It took me 6 months. The damage was already done. Now healing.

Good for you though. Experimenting. Trial and error helps others; documenting it here helps get it faster.

Adrian,

Logically, your approach - as a member of the more apparent company sponsors of this site - could appropriately divulge the research parameters behind product development - naturally preserving the company's integrity and professional property rights.

I speak with a commercial chemist within a couple of manufacturers of ostomy products, and when there is a specific question of chemical content and matters of that like - where there is professional integrity - such information is so valuable to the user - who, in pursuit of solutions for their own problems, actually render a valuable contribution to the R+D development and provide specific data - sometimes having a real consequence relevant knock-on effect, resulting in product tweaks.

And here I am speaking of regular mass market appliances - not bespoke medtech devices under clinical trial - which is something quite different by way of development and financial procurement.

I respect an engagement - but also reflect that there is balance in such profiles as yours when it comes to participating within the Open Forum.

It would be good - and forward-thinking - perhaps, for you to share a number of objectives - by way of example - [known to all manufacturers - thereby not compromising professional advantage] ..... By doing this, you may well promote more engagement from your readership - if that is within the business model parameter within your role as Research Chemist? And if not, perhaps for you to highlight your own role within the company, thereby might promote specific helpful engagement - openly, within the forums on site.

Doubtless, you have private messages from readers who are able to contribute to the development and reach of the company's products.

It is easy to criticize - it takes a little more positive thought to contribute.

Thank you

Jayne