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Welcome to MeetAnOstoMate
The best place to meet and talk to other OstoMates with 17,423 Members.

What Brings You Here?

Posted by vdahl

I am trying to figure out what the major purpose for this site is and would really enjoy your thoughts. I can tell you what made me want to come here, enough so that I would pay the membership, is that I am rather lonely (even though I'm busy) and would like to discuss some things with people that understand. Being new to the world of ostomates, I would like to hear from vetrans AND newbies about lessons learned, ideas, remedies and good old coping mechanisims. I'm retired so it's easier for me to check in anytime night and day.


In your opinion; is this site more about looking for a perfect "match" or a safe place to openly discuss what happens in our day-to-day life having to deal with the nuances in order to navigate the world with our new best friend. Personally, I took the advice of one of my favorite ostomy nurses to name my stoma... making it my friend, rather than foe. I named it Roo... as in kangaROO because I now have my very own pouch!


Of course, I'm a newbie so any advice I might come up with is based on my own research and personal experiences. I respect there are differences based on the type of ostomy we have and I would like to understand them more.


* Do you have a local support group? If so, do you find it helpful and how so? If not, would you consider creating one? I'm incredibly humbled when I am reminded that years ago ostomates had to figure everything on their own... it's crazy!


* Do you have access to visiting home healthcare nurses? After discharge do you have access to octomy/wound care nurses through your hospitals or clinics?


* Are you intimidated by all the choices available? For me, it's like being overwhelmed in the cereal isle at the grocery store... too many choices!!


* Do you have an emotional support system? I'm curious when I see profiles that state "divorced" or "separated"... what part has your ostomy played in your marital status?? I know I struggle because I feel like my spouse really doesn't want to try to underrstand how I feel. He certainly doesn't believe that I'm exhausted and that my self-esteem is shattered by his comments and judgement.


* What kind of access to supplies do you have and what are the differences based on insurance coverage, state laws and/or country of origin?


* I know that the diseases that bring us to ostomies certainly doesn't discriminate by age, race, gender, marital status or location. In your opinion, does it play a part in recovery or access to proper care?


* I'm not sure what roll "membership" to this site plays in communication but I'm beginning to feel a bit rejected when I try to initiate a conversation in "General Chat". I know going private is certainly easier but I really don't have nerve to ask for a private chat. Again, is it primarily because most people are wanting romantic relationships?


SO, what do you think???


 


 

Comments:
I joined (only as a free member) out of fear of the unknown. I felt I needed to connect with people who have lived and breathed life with an ostomy. Though I have an ostomy nurse to lean on, there is something to be said for getting advice from an experienced audience. I have also found it's felt good to be able to give advice from my own personal experience.
Hello Vicky.
Thank you for your post as it's great to have someone with so many questions. I will try to answer them in the sequence you have put them so that I don't lose track of what I'm saying or repeat myself, which I'm prone to do nowadays if I'm not careful.
I suppose I should admit that I am not a paying member but because I post a lot, the administrators often give me free membership for a month (which I have not yet found a use for).
In my case, coming on here was not about trying to find a 'partner' in the sense of romance or to alleviate loneliness but at first there was an element of thinking it would be useful to talk to people who understand what it's like to be stuck with the problem. This aspect worked for me, which is why I've remained on here for so long and now I feel it's good to be able to help other newbies in a similar way to the way I was helped in the early days of coping with the strangeness of it all.

There is a local support group, which I have never been to - largely because I don't have time and partly because I irrigate every evening and would not want to break my routine to attend 'anything'. I have been to one of their weekend meetings where they invited the manufacturers to show off their wares and found it useful and interesting.

There is a group of ostomy nurses at our local hospital whom I have contacted on a few occasions and found them to be very helpful, especially when I'm on the scrounge for equipment to experiment with. It seems they only see people by appointment on Thursdays but that has never been a problem for me.

I've never been intimidated by choices (or anything else!) and have gradually worked my way through trying almost everything appropriate that is on offer, so that I can ascertain what 'I' feel is right for me. I also design and make a lot of prototype gadgets to see if I can improve on what the manufacturers have on offer. In this sense, I have come to believe that a lot of stuff needs to be tailor made to suit the individual, a concept which so far none of the manufacturers have really grasped, probably because it would not be financially viable.

Like you, my spouse is not into talking or thinking about the stoma problems, which makes the discussions on this site much more pertinent and relevant as a support system. I have always respected people's personal space and choices as to what they do and do not want to get involved in so her choice to avoid the subject does not bother me at all.

I have had two suppliers over the years. The first was suggested by the hospital before I was discharged so I didn't have much of a choice about it. The second was of my own choosing. I have no complaints about either of them as they both offered a good and similar service. My choice was based on the fact that the company I use is attached to the manufacturers of the main products I use.
I am in the UK which means my supplies are provided through the National Health Service and are paid for by a form of tax. ( National insurance)

In my opinion, it is inevitable that the diseases that led to having a stoma will influence recovery. However, access to care is a slightly different issue and can depend upon a number of interrelated factors, such as the quality of your GP service and how they view the 'neediness' related to you and your condition.

I'm not sure about general or private chat because it seems to me that by choosing those options, we exclude all those people who just come on here to read what people have to say and do not (at that time) WANT TO POST STUFF THEMSELVES. Sometimes, I feel that it will be the silent ones who may need the most help and support in dealing with their lives coping with the stoma issues and so I prefer to correspond on the open 'forum' and blogs so that the correspondence is there for those people who just want to dip in and have a look, before they decide whether or not to join in.

I hope this goes some way to answering your very interesting questions.
Best wishes
Bill

Hi Vicki:

Great subjects. Let me give you my answers, in order of your posting:
I believe this site is for all the purposes you listed. Of course, everyone has their own motives.
Yes, there is a (small) local support group. Went once ... very depressing. Have not returned.
Yes, had access to local nurse/ostomy nurse, both at my home and at the local clinic
Not intimited by choices. Tried a few, have now settled (14 years) on one brand/type. Took some trial and error, though
Emotional support system: No. On my own for that, but I learned a lot about myself in the journey. Much stronger now because of it.
Acces to supplies: I phone in to a supplier in Vancouver, and they are couriered to my door. Health plan and BC government plan pays.
Age, race, gender, marital status or location playing a part in recovery or aaccess to care: Not in my case.Not sure how age, race, gender or maritial ststus would be relevant to level of care. Location might, though.
I have initiated anumber of contacts with people who say they would love to chat, or "when in my area drop me a line", and I do .... and disapointed in the very few responses. If someone does not want to chat/contact, then I would appreciate be told .. not just ignored.

So ... there's my take :-)


hi vicki
i joined this site jan 2009, i was looking for everything i could to help with my colostomy. in the town i live in no support groups,not even at the hospital. i did look for them so i could see if any close by that i could drive to, the closet one was about 2 hour drive away. so after that i found this site, it was really good for awhile there were a really good group of people to ask questions to find answers tell jokes to explode if that is what you need to do venting was really good in here about how you felt at the time of dealing with your new life. sad to say that some of the good people have pasted on and no longer can be here to help and listen.
then there are the ones that bitch and cry poor me way to much and that is why i only check in every once in a while, i cant handle negative people like that,i do not care about what religion you are or if you are religious or your political views about the government that is not what brought you to this site.
everyone goes thu depression when you get this little friend. everyone that has gotten this kind of surgery didnt go to the doctor and say hey i think i want to have a colostomy or many of the other different reasons to get this surgery. major changes in life happened to people to get one and then we have to figure out how to deal with the new changes in life. cause its not going away for some they might get a reversal or a revision surgery to improve the one they already have like it did.
i did not have a spouse to deal with all the stresses that come with the new friend i had few people to talk to cause of this site which was great cause venting was a very important part of healing. so the other support i had family mainly my mother and father and very few good friends that helped me thru those that stayed beside me and listen with their ears and not their mouth. most of the doctors wanted to give you pills to fix the problem but i am not a pill taker plus that would have interfered with me owning fire arms so no way was i going to let that happen cause i like to hunt.
i am a veteran so the VA helps with my supplies how lucky i am there but if i run into a snag there i have found supplies online i can get for cheap price to make it thru if i have to.
i tried to find a mate using this site that did not work out finding friends on here to chat with not so many so i did that with video gaming. if i join in the chat room what the site did not have when i first joined makes it nice but then its all on timing to get a bunch of people on at the same time is a good luck thing.
so i have done enough of "this is that" and "that is this" if you know where this comes from shows still young at heart muhahahahahahaha
have a good day
for me this site is a good way to give back something, i had cancer and you cant belive the many people who helped me out during and after i was first diag with it. i feel an obligation to newbies as i can remember those terrible "dark days" when i first learned to deal with leaks and accidents and all the stress that goes along with them. i didnt think i would ever learn how to manage, but as we all know you can and will learn to master the situation. i think cancer survivors have a little bit of a bond.....after all we cheated death, lets celebrate life.
and where else can you talk about pooping and folks listen!!
Hi,
I didn't know this was a dating site for a long time after joining. One of my girls said: Well, duh. It says 'mate' right in the name of it!"
I had a colostomy for ten months and had it reversed about 15 months ago. Now I have a MRSA infection I acquired through surgeries so my stoma site hasn't healed completely. I had a stoma repair surgery and a hernia repair surgery along with the colostomy and takedown. So 4 chances of getting MRSA aren't I the lucky one?
With my first operation I left the hospital and went to care home for 3 weeks. I had visiting nurses for 6 weeks at home but not for any other surgeries.
When the ostomy nurses came to see me in hospital to talk about supplies, they shook their heads and said "she doesn't have a clue what to do!" They were so right! I was hearing them but I didn't 'get' any of it and that's why they sent me to care home until I could change my own bag.
My support system are my mom and my girls and best friend. Since my mom is 91 years old I live with and take care of her. It was hard after the takedown surgery to come home and had no support whatsoever. It was finally mom I told you can't expect anything much from me because I can't even hire anybody to clean or anything. (I'm lucky in that she can dress and bathe herself. She's diabetic so meals and pills are the important elements I do for her but I like to keep house presentable and 'nice' for her.) Anyway she agreed that's what she wanted tooand we made it thru.
She really wants to be my support system but I can't divulge too much because I worry her. Her worries are right to the heart of WHAT WILL HAPPEN TO ME? I'm divorced but imo it's been better going thru this alone. Besides the fact that the only way my husband reacts to stress is to blow up and throw a fit, I'm glad I haven't had to share my bed or my bathroom with all the problems and I had many!
Let's see, I'm not a paying member and I don't know how to get in the chat room I've wanted to observe and I see my name on the board but I don't know what to do next.
I'm in Calif. on medi-cal and as long as a dr.prescribed supplies for me they came regularly from supply house. Nothing worked well for me but any new product was worse. I had an invertedh stoma and I'm sure I would have found something that didn't leak but it was hard to order online. The extra rings or other things I tried often backed me up cuz they prevented passage!
I used this site mostly to sound off and vent and they helped me by assuring me I'm not stupid or hysterical. I also used this site to be "doing" something while getting well. I had a hard time feeling beat but watching things pile up on me or not doing any of my hobbies.
I'm not 100% yet and I don't know if I ever will be. I don't know what this MRSA will do to me but I feel like a lepper with it. I'm on my third course of antibiotics that I take 30 days at a time. During surgery they found an irregularity in my heart that I can't get my regular ekg until she signs off on it. She says there's no signing off because I will always be a host. Besides all that I feel my age now, 65, where before I didn't even realize I was getting old.
I hope I answered some of your questions but my screen ???? is freezing up and sorry but I can't even check for errors.
Good luck
Charlotte
Idaho and Chark63, let me say first that I read your posts and have the highest degree of respect for you both. I also am a newbie, having my colostomy created on October 3, 2016. Like Chark, I expect to be reconnected very soon. Like Vdahl, I joined primarily because of loneliness. I don't see this site as a dating site but I realise many do. I don't think it works well for that, probably because so many of us are afraid to trust new people. I don't need romance anyway because I already have my perfect mate. But having beaten lung cancer and about to beat diverticulitis and an Ostomy, I understand dark days when the least bit of bad news can be frightening. At this point, having been told to prepare for death so many times over the last 20 years, I have realised the doctors don't know any more than I do. My network is my wife and children. Even my Masonic brothers don't bother to give me support if I can't come to the meetings. My insurance company provides telephone or in-home support if I need either. My main problem was venting. The support group is good, but this group is better. Even on this group, however, only a few give all the support. It has more to do with personalities than the level of membership. Thanks for asking questions and providing support to all of those who have helped me and to you two in particular. Don.
Autocorrect bites again even when it is turned off. The word Idaho was Vdahl when I typed it and only changed when I posted it. Sorry.
Don,
That's nice. Thank YOU!
CharK60
Thank you everyone, for giving the gift of time and kindness with your responses to my meandering curiosities. You made me giggle DonBrown... for the life of me, I couldn't figure out who Idaho was! LOL, of course you answered immediately. Now, that's another question worth pondering... how in the heck does auto correct get Idaho out of vdahl? But that's a whole new topic for another time ;)

I've always believed that Love is being heard, understood and accepted in our naked (metaphorically and literally), imperfect wholeness. If we're really lucky, our presence is not only appreciated, but "longed for". Personally, I've always said I just want to be somebody's "WOW"!! Our ultimate common ground is based on a new normal, managing our individual ostomies and for some of us, accepting this new orifice in our bodies - on top of everything else I don't want to look at when I step out of the shower!!! OK... maybe it's just me! Gosh, I guess I'm pretty insecure... maybe I'll get better as time goes on, but in any event I'm ok with being vulnerable - I just want my spouse to let me know I'm still desirable. Is that being too needy?

My original question about whether the intention of this site is match/date or sharing concerns, thoughts and/or idle musings. I've quickly come to understand it doesn't matter, in fact none of my business. If someone meets their forever other here... BRAVO! Furthermore, if it's the case... I want to hear about it!! What I know for sure is it's a great place to chat with like minded people, no addenda/no judgement.

OK... so I am going to stop here! There's much more that I want to say --> I had written much more (not yet saved) but must have hit a mysterious key deleting everything!!! Dang it!!! DEEEeeeeeeeeeeeP Breath!! More to come...
Hi. I think you have discovered the benefits of this site. My support group is from the pharmacy that orders my supplies, & I have discovered other pharmacies nearby who offer ostomy nurses or experienced advisors. I have been busy with comments tonight & this will be the third time I am recommending you tube for advice. This site has a great deal of info from people with an ostomy. Do you know there is a small bag to use for intimate moments? This may help. Time will help with your confidence. Good luck.
Vidahl,
And now you've experienced the worst part of this site, sorry to say. The disappearing words you just wrote that took 45 minutes ago nd you had expressed yourself so succinctly but where the heck did it go?
I sure hope the words I lose from here don't get found in the body of a business email lol.
I find it happens most often when I'm using my phone and either get interrupted with a call or try to edit my grammar a couple sentences up.
I can sometimes get away with it if I push the DONE key and then place the cursor where I want it.
As for spellchecker, we are all
cursed with that bugger taking words right out of our mouths and saying it wrong. It's funny how far off I can key in a word and have the little shit know exactly what I meant to write. Not so when it takes a mind to interfere. It's eerie how it knows word by word what I'm saying also for a whole paragraph.

I don't think I'd call you being too "needie" for wanting to feel desirable. I'd say you know what you want and need to feel good in your relationship/love life. Why do we have to start asking for it when it used to be so easy? I'll bet you give him his due? Of course you do. We are women and we give.

So I'm happy that you're happy joining our little community. You have found the key here. Use it and us for what we have to offer and don't try to force any ideas or expectations on the group. I'm reluctant to make such bold statements as I am still a newbie compared to some of our friends. I should say most of our friends.
Right now I've worked fo 20 minutes to reread my post before sending it and all I could was 8 lines at a time never to the bottom of the message. So frustrating! But so embarrassing to read online a stupidly drafted post rom myself broadcast to the world. Goes to sh way a new world we live in.
Charlotte
See what I mean?!?
Hi Vidahl, and you probably know why I came to this site. I had emergency surgery and ended up with this permanent bag on my belly. I am still struggling with acceptance and having a hard time sleeping. I wake up early with horrible anxiety and sometimes can't fall asleep at all because of the anxiety. I have meds but they aren't working real well. I thought I could maybe find out if others had this anxiety and what they did about it. I hope through your help and others on the site, I will find some answers.
Hi Freedancer! I keep meaning to tell you I love your screen name :) I really do understand what you mean about the anxiety. I know the added circumstance of having this surgery in an emergency situation might feel overwhelming too. You're also in a unique situation of dealing with the VA, so I must say... KUDOS to you for reaching out!

I was able to do a lot of research and anticipate, what I thought would be, every scenario prior to surgery. I'm also an advocate for mental health, fully appreciating the need to speak out and remove stigma and shame. All said, I figured I was prepared and would be able to be back to myself quicker than normal... well, guess what? I had NO idea about the real impact of the anxiety and depression relative to this "new normal". Knowing what I know now, I would have asked a lot more questions and insisted on some changes in the procedure. But, hind sight is 20/20, right?

This isn't an easy surgery to go through. You've endured a great deal of trauma. I don't know how you feel about medications or alternative practices. I've converted a space in my home that I call my Zen room for meditation and mindfulness practice. I also enjoy aroma therapy. The main point is to be good to YOU!

I'm sure you've been told that medication, especially coated and extended release, might not be as effective because it's going through your system so quickly. I'm having trouble with my thyroid medication for that very reason. I'm grateful that my endocrinologist is so supportive and has even reached out to my surgeon to get a better understanding of what's happening. Don't be afraid to reach out to a support group either. I see a therapist on a pretty regular basis and go to our local ostomy support group every month. It's important to be around people that understand your situation and offer positive support.

Feel free to contact me any time you wish.

Vicki
Hello vdahl

I think you're a very nice and brave lady to publicly voice issues that many people on this site have. I've had an ileostomy since 1976 -,I was 18 way back then.

How many ostomates have I met? Let's see there was the local lady in her mid twenties, married who'd had an ileostomy for three years. My mother took me to meet her a few weeks after my surgery. From my perspective, three years seemed forever, she was married before her surgery so I thought she skipped the difficulties of dating, .... and I would be off to college in a few weeks. Years later, when I was 23 I attended an ostomy support group meeting just to check it out. Everyone was in their 50s/60s with their spouses. They thought I was SO Young, ... no connection there. In my thirties I met some fellow who had a ostomy who had adjusted, as had I. That's it. Now there's a place where people can talk : what products are best, what do you do if you have a leak, dating, ..... things that for many years people had to deal with alone. And what do you do when people say and they make vulgar jokes about ostomates - and they WILL. After many years, I speak up and out. These things are what I think this site is about.

Apologies for the ramble and hope there is some sense among these words



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