Finding Support - Making this Ostomy Resource Accessible to All

Hi gang,

I was thinking what a great resource this site has been for me since I found it. It would have been really helpful, but maybe a bit scary, to have found it before my ostomy, but that's water under the bridge. But I got thinking about it, and now I'm questioning why doctors and hospitals don't provide this site's contact info to any patient even considering an ostomy today. And how can we change that so potential ostomates can learn about the road ahead for them by getting on here and asking questions before the docs go chop-chop. How exactly do you get all hospitals to provide their patients specific information, like this website?

I just happened to find this site something like 4 years after my ostomy when I Googled "ostomy forum" or something like that. But I never found it during previous searches.....so I found this site pretty much by pure luck. We need to find a way to make this site available to new or soon-to-be ostomates......as that's when we really need to commiserate with fellow ostomates. Anybody have any thoughts on how we do this?

Thanks,

Bob

Hmm, I remember when I stumbled upon this site by accident recently, and I am thankful I did because I have read so much good information, which has proven very helpful. I am a recent ostomate, October 9th, 2019. Now I am no internet guru or anything, but I think that social media seems to be the way people are going, which to me is crazy. I believe also that there is still a stigma out there that people like us with ostomies have to hide what we have and are because we are not what people think of as "normal" and "cool" people don't understand us. Heck, I had words with my oncologist's nurse because she tried to tell me how I should be, how I should feel, etc., etc., etc. Now (sorry, I am ranting here... I am just an adamant old soul who believes in right is right...) back to the subject though. Maybe social media like Facebook? Or see if maybe the United Ostomy Association of America can help with advertising or at least put the word out about this site. I am going to my local UOAA this coming week for the first time for info, but they seem to be legitimate and worldwide, so maybe that will be a good start?

Bob, you were "thinking? Did you hurt yourself?:0

I believe the reason doctors and nurses won't recommend a site in general is due to liability. Lawsuit. Supposing doctors did this and a patient received information from this site on say, using saline solution to rinse their bags out and just supposing that patient had a terrible reaction doing this and ended up in the hospital or nearly died from some kind of allergy or shock to his system... would the ostomate giving this info be responsible here or the doctor?

Interesting dilemma.

I guess a disclaimer should be written. I think this site does have one where they aren't responsible.. good for them.. smart too... so who next in line could be sued? The member?? Or doctor?? It's just like holding a gun manufacturer responsible for a gun killing... or cigarette company for lung cancer from their cigarettes.

So I can understand the professional medical field and its people not suggesting any site....

Word of mouth is the best approach but whose mouth should it come from?? I feel it should be ours. And ours alone. Or the mother organization that is protected..

Have you seen the TV ads for medicine for Crohn's or IBD?? Stelara? I think it's called.. and another enzo- something? Big drug companies with their ads.. surprisingly not one word mentioning the Crohn's and Colitis Foundation.. "for more info contact".. nope.. nada.. I have seen some ads for Crohn's and Colitis Foundation.... but nothing about the ostomy org. Now this is the first place we should have a voice.. don't you think?? (Be careful not to hurt yourself here) hee hee..

I found this site in August 2019 where I became a member immediately. 2 1/2 years after my surgery. However, when I was presented with emergency surgery, I went to YouTube to see WTF I was getting into. That's where the disgust and shock came from owning a bag and how to deal with it. First impressions are everlasting, man.

I am brain dead. I have no idea how I found this site. I have found help here and offered as much help as I could. I have made the top ten a few months and it pleases me. I try to promote this site by greeting any new Canadians to the site and try to share stuff in the chat room. The more you work it, the more you will get out of it.

Hi everyone, I really don't remember how long ago I found this site. I think it has been less than a year and I think I was looking for some information about the ostomy. I have gotten a lot of good feedback about a lot of things. I would have to agree with Warrior about why certain people would not recommend this site.

Living with Your Ostomy | Hollister

Hello Bob.

I'm with Lovely and Xnine in that I haven't a clue how I came across this site in the first place. I tried looking at my early posts to see if that might give me a clue -but with not much luck. I suspect I simply Googled something like 'stomas' and browsed through whatever presented at the time. 

Some of my very early blogs were around the subject of 'Bullying' so, rather ironically, I may well have been attracted to the lively discussions that were prevelant at that time, where certain members were being unecessarily abusive to each other.  Having studied bullies and bullying for many years, I would feel well-placed to offer an objective perspective on such matters, and the opportunity to do so in rhyming verse  would have seemed almost irresistable.

However, finding the site is one thing. Reasons for remaining as an active participant is quite different and should perhaps be considered alongside the the concept of joining. My own reasons for staying are multi-faceted (as usual). But it has to do with listening to people's stories about adversity (including my own) and trying to document those as accurately as possible in rhyming verse. This tends to give a slightly different perspective to some otherwise unpalatable situations and circumstances. In one of my early books on using rhyme as a therapeutic tool, I wrote several verses to try to explain the process. One of these I will reproduce below so that You may get the flavour of the concept and the motivation for writing this stuff. 

Best wishes

Bill

INVERSE FEEDBACK - (THERAPY?)

First, I feel I should be there

so nothing goes unheard,

then I can listen with great care

to each and every word.

Next, I want to empathise.

To grasp just how you feel.

So that I might realise

which things you think are real.

When you've shared your inner soul,

your troubles and your woes,

I will ponder on the scroll

and then convert your prose.

What you felt and what you said

might seem a bit perverse,

when all those words  are now instead

fed back to you in verse. 

Reframing and restating views 

that you have shared with me,

creates an image that renews

my faith in  poetry. 

                           B. Withers (1992)

Hi all, I started on UOAA.ORG many years ago and someone there mentioned this site, but I was hesitant because I thought it was only for dating.

About 10 years ago, I think I must have Googled ostomies and it came up. There used to be a much more active group back then, and lots of jokes were posted too.

Thanks for the posts, guys. Seems a bit interesting (to me) that no one said their Stoma Nurse or Ostomy Nurse told them about this site. Everyone seems to stumble onto here by luck or through a search while looking for something else. And the name of the site does lend itself to being considered a dating site, for sure. Maybe I'm considering this site more important than it really is. I'm not a Facebooker for a variety of reasons, but maybe the needs of the ostomy community are being better served over there. Although, no one in the hospital told me to check out Facebook for ostomy info when I got my operation either. Just seems logical to me that when you leave the hospital with your new poop bag attached to your hip and you have to deal with the world from a totally new point of view that they'd hand you a printed list of resources to check out... like Facebook, this site, and all the other good resources I haven't found yet... but that's just me. Oh well... thanks again!

Regards,

Bob

I think that each of the gang, new and old, should contact the surgery scheduler in their colorectal surgeon's office, urologist, gastroenterologist, etc., the ostomy care nurse at their hospital, and the support groups in our areas, that would cover so many states it would be unbelievable! How many ostomates are on here? Thousands? Not sure about liability there. They can just list this as a suggestion for support. They suggest medical supply companies and there is no liability if they screw up. Legalities are hard and a "no responsibility" clause works!
Word of mouth is the best method of spreading the word!
I am in to do this! Are you?

Puppyluv

There are over 20000 on this site and I only see a few posts. Not sure why they don't join in the conversation. Maybe they don't have any problems.

Hello Bob.

When I log off this site, there is a message about helping the website to grow that comes on the logout screen (reproduced below).

Help our website grow:

Tell your local ostomy supplier, doctor or nurse about MeetAnOstoMate
Talk about MeetAnOstoMate at your local ostomy group meeting

These seem like reasonable suggestions to me !

Best wishes

Bill

I heard about MeetAnOstomate by someone who works at Action Medical where I get my supplies many years ago... There is a lot of information on the internet about this site too...

Hi Bill,

Yes, I saw that note too. I'm just wondering if there's a "formal" process that needs to be followed for each hospital or ostomy surgeon for them to make the suggestion to each ostomy patient. For example, why did they start me on Hollister products in the hospital when I got my ostomy? Was that just the ostomy nurse's choice, or did Hollister do something (or contact someone) for that to be the case? They did give me a couple pamphlets, that I have now lost, but why did they specifically give me those and not others? I guess I just need to go to my local hospital and ask what it would take for them to recommend this site, or any other specific piece of information, to new ostomy patients. Is it even bigger than the local hospital level, meaning does the AMA have to approve something like that, or is it really a local decision? I'm just not well-versed in the medical profession politics, I guess. So I'm asking if anyone is.

Thanks for your and everyone else's reply!!!

Regards,

Bob

Hello Bob. 

Your raise an interesting set of questions regarding medical politics. During my time working for the NHS it was extremely difficult to establish precisely who was influencing decisions and how. At the level of stoma nurses it would probably be either a strong link with a manufacturer's rep, or that the company were supporting their work in some other ways. At the 'consultant' level, it was often that manufacturers/drug companies were willing to 'sponsor' research and/or 'professorship' at the local university. This motivates the recipient to favour their products.  I found that whilst nothing they were doing was 'illegal', yet neither was it completely 'above-board'.

In the UK we have a body called NICE (National Institute for Clinical Exellence) who say whether a drug or a therapy would be recommended to be used. However, their scope rarely includes the sorts of aftercare products  etc that we are talking about, probably becasue there is not so much money involved and therefore not so much incentive for corruption. 

When I first started using stoma products, the nurses only recommended one company for supplies. I immediately swopped to another one, and nothing was said to dissuade me from doing so. This give me the impression that any 'influences' on the staff are probably at a personal/local level rather than institutional. However, it is so difficult to obtain this sort of information that the ordinary person ( even if they are employed in the system) would never know. Indeed! when I felt the need to know anything important, I used to obtain it, either from sources outside of the system, or from 'informants' within. You would think that with a 'Freedom of Information Act', that obtaining simple information would be relaticvely easy. This is certainly not so, when it comes to ascertaining what influences are taking place behind the scenes. What is needed in these circumstances is for investigative journalists to get into positions where people want to influence them, and then they can expose what really happens behind the veil of respectability. 

Best wishes

Bill

It was my lucky day when I stumbled across this site. I do not have the same access to information and suppliers as the others do, but by keeping my eyes open, I have learned a lot about the subjects that interest us all. Even little tidbits of information, like using Head and Shoulders to keep the skin clean, help because of the zinc in it. No pretty stoma nurses though or free samples to decide which equipment works best for you. No complaints, however, if you pay a bit above the billed amount, a rider on a motorbike delivers everything at home or the office promptly, even in the evening. Best wishes.

What happened to the jokes? I remember reading one about a hotel resident and room service that had me in stitches. It was posted by Tippitop from the UK, I hope she is well.

When I first was told I needed the ostomy, my husband looked up lots of websites with stories and helpful information to let me know what I was getting into (since I was still in the hospital and couldn't do any of that on my own). After I got out, I continued looking for sites with information and ran across this site by accident. I lurked around for a bit, found lots of helpful information, and joined for a year. I found so much good information and especially emotional support that I did the lifetime membership and have never regretted it.

When I was getting out of the hospital, the ostomy nurse gave me a packet of information, including places where I can get ostomy supplies. Strangely enough, of the two dozen or so names on the ostomy supplier lists, almost all of the names were out of date - local companies that do carry durable medical goods but not ostomy supplies. Makes me wonder if they just looked up "durable medical goods" instead of "ostomy supplies". Or just old lists that never get updated. So it's no surprise that they don't recommend websites. I don't think they really have a clue what ostomates need on an emotional rather than a physical level.

I found this site by accident after my colon cancer diagnosis. I had a temporary ileostomy which was reversed in May 2019. Unfortunately, my colonoscopy in November shows my cancer has returned. Now it appears my only options are more chemo, radiation, and a permanent colostomy. I hated my ileostomy. My sense of self-esteem and self-image were decimated. I had just started to get back on track for a photo shoot to show success with my training and overcoming cancer. Apparently, the universe found me too uppity and dealt me this blow. I'm happy so many of you have learned to learn and grow from the experience. I have not and have given in to depression and not wanting to go on.

The best of luck to all of you with your journeys.

A few years ago, I googled a question about how to control ostomy output. Google came up with an answer that had been posted on this site. Thanks to that answer--taking loperamide--I no longer have an output problem. And thanks to that answer, I discovered this site. So, I really should thank Google.

This is a worthwhile topic and I thank Bob for initiating it.  For starters, there are several groups that ought to be contacted and provided with information/pamphlet about this group:  the American College of Surgeons; the Wound, Ostomy and Continence Nurses Society; and the Society of Hospital Medicine (hospitalists, as they have come to be called).  These associations, and others in medicine, all have annual or periodic conferences at which they gain update knowledge for continuing education points.  It would be nice if we could recruit a qualified individual to be available as a presenter for these seminars and sensitize these people to the issues and the problems that ostomites face daily.  The surgeons particularly, have no clue about after care matters, and likely view it as beyond their responsibility.  Even the ostomy nurses may not always keep up-to-date on the latest advances in ostomy care products, not to mention personal care issues.  I wonder if ostomy product purveyors would be interested in underwriting the cost of accomplishing any of this...   

Wiljpeters: Please ask your oncologist about Keytruda (I am not sure it is spelled correctly). It is immunotherapy, not chemo. A friend of mine had duodenal cancer and went through chemo and surgery to get rid of his cancer, but it came back in about a year. Now he is on Keytruda, and there are no side effects. It is a much longer-term therapy - it's not exactly fast acting, but after about 6 months, his cancer is no longer growing at all, and the doctor expects it will eventually eradicate the cancer. Not everyone is a candidate, so you need to talk to your doctor.

Please, PLEASE, do not give up on life. It is too precious to let go. Depression is insidious, and you cannot see a clear pathway or make good decisions when you are depressed. I have what has turned out to be a permanent colostomy. From what I have seen and heard on this site, a colostomy is different from an ileostomy, in that the output is firmer (not as liquid) and less volume. Also, there are closed-end pouches so you can just change them and throw the full pouch away in a neat disposal bag instead of the agony and mess of emptying them into the toilet and the impossibility of truly getting the re-sealable end clean and non-smelly. nbsp

IT IS NOT THE END OF THE WORLD, AND NOT THE END OF YOUR LIFE! If you live a full lifespan, you WILL lose other things - hair, teeth, etc. Nobody looks down on somebody who is bald or has to wear dental plates. It is a shame society has decided that THESE are acceptable losses, but other body parts are not! nbsp

I don't think the WOC nurses or the surgeons have enough mental space to recommend resources such as this. And the majority of them don't "live" with an ostomy, so their hearts aren't ignited by sharing what can make or break the day-to-day of an ostomate. Medicine is what's in front of you mostly, no time for more in-depth info. But when you have a bag, you start Googling, and that's when you make connections with baggers.

I joined this site many years ago and didn't return until recently because I got my ostomy chat on via Facebook groups. There, someone recommended I talk to someone here about a specific issue. Either this place or Facebook groups (or other forums.. I was on the UOAA one for a long time years ago) allows for real bagger-to-bagger conversation because there is so much to ask and talk about. ... When you figure something cool out for your own bagging purposes and want to share it, when you're having a catastrophe and want someone to lament with you, when you're curious about a product, etc., etc., etc.

About recommending this site in particular. It's my impression that MAO was set up to be an ostomate dating site, not a general resource, and that membership mechanic has downsides. I'm a freeloader here, so I can't disclose my name or contact info, even if I want to reach out to a person who lives in my town who has had an ostomy recommended to her by her doc. If this were UOAA or a FB group, I could message them and share contact info to see if I can be helpful. Point: the online resources definitely need a plug from healthcare providers because most of them really don't get the day-to-day of a bagger... and we need to connect with our tribe.

Hi ileona12,

Yes, us old dogs can (and still do) learn new tricks. One of the things that prevents me from believing in a god (or God) is the fact that we're our smartest on the day we die. That seems kind of backward to me, and what a waste. I'd much prefer to be born as smart as I could be and then gradually lose that knowledge over time. So it seems if there is a god (or God) he's got a bit of a twisted sense of humor about all this. And I don't see how that could be a good thing.

But to stay on subject........you're right, I do find it impressive how well the internet is "learning". You can now Google pretty much any question, and if you have suggestions turned on you'll see it's already been asked. That's pretty cool. At some point the internet might actually be useful to folks. Now who would've ever thunk that?

You have a great night!

Regards,

Bob

Hi all,

I am BAYS NTNU all! How I found this site, I was searching how to take adhesive off a fiberglass shower. And boom, I met an Ostamate website and joined, and it was one of the topics discussed here! Amazing!! And this was February 2021, 15 months after the first post by w30bob.

I was diagnosed 4/8/19 with Urachus Cancer and bladder cancer surgery 8/14/19. But in between, I was searching and searching for support groups and trying to gather as much as I could, and even tried to join the cancer society in my area, and big fail. It would have avoided loads of heartache and craziness for me. Especially since my cancer is very rare, urachus cancer. From understanding, there are less than 3 percent of people who have had this kind of cancer. It's scary when your doctor says to you, "So your cancer is rare, not a lot is known." I am like, "Pinch me!!"

I do totally agree with w30bob that programs and resources should be given to patients like ourselves. Doctors, wellness classes, cancer societies, therapists, case workers from hospitals, etc. It is a must, I feel, pre and post-surgery. I received an info packet the day they picked and X marked the spot for my stoma. The packet contained 4 papers about eating and care and pictures of a stoma. I was like, "Wow." That was sad, didn't help me one bit.

I also think info should include going back to work for Ostomates and employers too.

** I do have a question for everyone... Anyone have their procedure and care given by City Of Hope... or similar hospitals that specialize in cancer of all types? Wondering if they do it differently.

I have ideas, w30bob, and I want to spread the word as best I can. I am just starting my new journey with my Urostomy. But I would love to help peeps, especially before the chop-chop and always. I totally agree.

Thank you for letting me share and take care all.

BAYS

Hi Bays,

I am like you, have that rare cancer that there is no schematic for. I have a neuroendocrine cancer that presented in the rectum. It typically presents in the lung as a small cell type cancer. So, this cancer being very aggressive, my oncologist went as aggressive with treatment, as there is no protocol, as he could resulting in my colostomy. I was a case manager in my oncology practice but never saw any info about ostomy care. Unfortunately, never thought about it. Those that have had no exposure to ostomy care, even in an oncology practice, do not think of our needs. I probably would not have understood the needs of an ostomate had I been informed on the subject. Now, having a colostomy is so different and if I still worked, I would be seeking out ostomy patients in my practice. It all goes back to we don't know what we don't know! At least until it becomes personal. nbsp
I too wish the surgeon's office had better information and resources for pre-surgery consultations. nbsp

Puppyluv nbsp