Benefits of Talking for Ostomates Beyond Medical Topics

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iMacG5
May 29, 2016 9:00 pm

If this is a website for ostomates needing or offering help with others familiar with this whole process, why would we have topics like “Let's Talk” or “Questions NOT Related to Ostomy”? Well, I think the developers of this site demonstrated some insightful perception of what might be good for us. The time I spent posting or replying to stuff unrelated to our condition is time I wasn't thinking about our condition, and while not thinking about it, I was unaware of it. “Just for Laughs” is terrific, but I know some folks found it difficult to find humor of any kind, in any place early on. I love it and look forward to your contributions.


There are lots of things to “talk” about, even stuff like my excessive use of quotation marks. There are insurance issues, government assistance here in the USA compared to the UK, Canada, Australia, and other places. We could discuss what we've learned about folks who really care and those who don't give a crap; those that make believe and those who became more scared than we were.


Talking is good for me. Often, it's better than thinking. Talking without thinking still doesn't work, regardless of how hard I try.


To all, stay well or be good, or both.


Respectfully,


Mike

Bill
May 30, 2016 5:15 pm

Hello Mike. It is as you say. If you are thinking or talking about something other than stomas and their associated problems, then you have been distracted 

It is as you say. If you are thinking or talking about something other than stomas and their associated problems, then you have been distracted. This may or may not be a good thing but if it helps some people then it must surely be a worthwhile exercise. For those who do not want to take part in such an exercise then there are always the mainstream topics to join in with. There is even a 'logoff' button for those who can't find it in themselves to take part at times when they would rather be doing something else.  

 

I never noticed  your excessive use of """""""""""""""quotation marks""""""""""""""""!

Best wishes

Bill 

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 37,000 members who truly understand you.

It's not all about ostomy. We talk about everything.

Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.

🛑 Privacy is very important - we have many features that are only visible to members, ensuring a safe and secure environment for you to share and connect.

Create an account and you will be amazed by the warmth of this community.

iMacG5
May 30, 2016 6:54 pm

Hi Bill.  You obviously get it.  Thanks.

Mike

elisabeast
May 31, 2016 1:10 pm

I think distraction is a good thing...I have severe ptsd because of this condition...I'm hard to distract because of it, but I love it when you can or can make me laugh.

iMacG5
May 31, 2016 8:30 pm

Hey Eli, thanks for stopping by.  You've been through a lot of the crap we all experienced and maybe even more.  I respect your comments and I think we all learn from folks like you.  

I think laughter is about the greatest medicine even if it doesn't last forever.  I remember the days when we laughed so hard we had snot flying out of our noses and who knows what out of other orifices.  Let's look forward to the next time we can darn near laugh our butts off.

Mike

 

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

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iMacG5
May 31, 2016 9:14 pm

So for some unknown reason I found a nearly year old post entitled “meetanostomate”.  I started it and Don, Vulcan and Marsha had lots to say.   Judi suggested Facebook while addressing the essence of my thoughts.  It was all good and IMHO, was the exact kind of diversion that allowed me to stop dwelling on my misfortunes for a bit and redirect my interests.  I know we can sometimes write stuff that might offend another but I want to think that’s accidental or, at worst, a little careless.  Heck, with all we have going on at times it’s a wonder we’re able to sit at the keyboard and find words that might interest someone let alone have the courage to actually send it. 


Anyhow, I just wanted to thank all you guys for pitching in to offer a thought or two and I look forward to learning and sharing all we have to offer.


Respectfully,


Mike

elisabeast
Jun 01, 2016 1:21 am

I make a lot of bad ostomy cracks on twitter...I don't find I talk all that well, but I can vent prolifically on there about walking down the street with my bag hanging out...

lavern
Jun 01, 2016 2:24 am

Those moments during the day when I realize that I have not thought about my stoma or worried about finding a bathroom are few but feel so good!

I just "celebrated" (couldn't resist) my two-year anniversary of having a permanent ileostomy, or as my niece said last night, "we are celebrating your poop bag!"

I've been told that over time it gets easier and that I will accept it. I'm feeling positive, but still waiting...

This is the first time I have felt the urge to participate in a conversation, so I thank you very much!

Maybe this is my first step?

elisabeast
Jun 01, 2016 10:30 am

Welcome and thank you for speaking out. Eliz

iMacG5
Jun 01, 2016 10:09 pm

Hey Lavern, happy anniversary and thanks so much for joining us.  It does get easier over time because we learn from others and, mainly, because we just do whatever to make it easier. I think we learn how to handle the physical parts of our new selves more quickly and more easily than the emotional and psychological.  But we do it in time; sometimes with some help. There's so much help here.  Just reading about how others handle their golf games, the movies, dinners with friends, and all those other events we could or should be involved in has been priceless.  Yeah, sometimes the reality of our medical situation causes a pause in our fun time but we get it fixed and get over it.  It's really nowhere near as bad as I thought it would be and, for most of us, a blessing.

Respectfully,

Mike 

vulcanBMk2
Jun 02, 2016 5:32 pm

Some of my ramblings & music can be quite boring & even sarcastic --- but I do love snippets of information from all parts of the world. I find this site not only informative but also educational. Now then, did I ever tell you about me & the one-eyed barmaid...

iMacG5
Jun 02, 2016 8:44 pm

Hi Vulcan.  If it's in the center of her forehead, I think I know her.  Probably not as well as you because I had a Studebaker that was no competition for your Jag.

Mike

vulcanBMk2
Jun 03, 2016 5:53 pm

Mike ...No probs with Studebaker, a great name in the world of classic cars. Never did see that many in the UK, but knew all about them: Champion, Avanti, Hawk, Lark, etc. ...Magical names...
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Login to see image

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iMacG5
Jun 03, 2016 9:06 pm

Hi Vulcan.  My Dad had '47 stick shift Champion with a hill holder and a '56 President.  Thanks for the beautiful pictures.

Mike

Immarsh
Jun 05, 2016 9:03 am

Thank you, Mike, for posting a suggestion to help us get to know each other better. Although we all, "old timers" or newbies, have ostomy issues at times, we are more than our ostomy. This has been a very difficult 2 1/2 years for me, with events unrelated to ostomy causing undue stress, leading to PTSD. I didn't understand what was happening and kept thinking that the nightmares, anxiety, change of personality, irritability, sleeplessness, etc., "would go away, eventually." Last August, I realized it was only getting worse, and I did need help. Sometimes, we're so far down the well, that we don't see the forest for the trees. With help, in less than a year, I'm coping with my demons and am recovering from the worst of the symptoms. Just because we have an ostomy, doesn't make us immune from other life issues...financial, emotional, or personal. Today I splurged and ordered 2 theater tickets for myself, one for a matinee, and another for an evening performance on the same day. I call it my tourist day in NY. It's been a long time since I've done this...mostly because being out of the house for an extended time was just too difficult to contemplate. Instead of dreading being out...I'm looking forward to...looking forward. And all the above has nothing to do with my ostomy. So for those who are "down in the dumps" and feel they can't move forward...I'm offering some free advice. Face your fears and anxieties, cry when you have to, do deep breathing to get you through the anxiety attacks, and know that you're stronger than any one issue. Finding that positive focus is a lot more productive, and a lot more work, than wallowing in sadness, for any reason. It's just difficult to do the work...but worth it. Best regards to all who read this. I don't think I "know it all," but after 50+ years with an ostomy, I do know that other issues sometimes impact our well-being...more than the ostomy.

Next week, I begin treatment for the second time for Hepatitis C. The last time, 12 years ago, it involved interferon and ribavirin, and I spent a year enduring the horrible side effects. In the end, the treatment didn't work. I swore I'd never do it again until treatment was 100% effective. Now there is treatment that is supposedly 95% effective, and so I'm taking a chance on the 3 months of treatment. I've had progressive liver disease from the Hep C for the last 50 years (from transfusions I had when I was sick) and facing therapy now, at this time of my life, is probably the most difficult decision I'm making. I'm giving up another 3 months of my life to the minimal "headaches, weakness, and fatigue that the new treatment causes." So I'm looking forward to a summer of pampering myself with leisure and lots of pool and book time...

Life isn't always easy, but I'd rather have this than the alternative. 2014 and 2015 were not good years for me...but I hope that the second part of 2016 improves my quality of life.

I hope this helps others who are struggling with real-life issues... Thanks again, Mike...and all the others who post and reach out.

Marsha

iMacG5
Jun 05, 2016 4:33 pm

Hi Marsha.  We’re so fortunate for your message.  You are such a wise woman and I thank you for sharing that wisdom with us.  I think lots of folks might have suffered with some of the things you mentioned but were unable or, maybe, ashamed to admit their feelings.  We’re told to be strong. Sometimes we can’t find our strength and you tell us we’ll get there with work.  IMHO, your free advice is priceless.  

Because it’s you and you’ve done your homework so well I look forward to your treatment next week with much optimism and, if you don’t mind, I’m sending a prayer of thanks in advance.  

Enjoy your tourist day.  Pamper yourself this summer and forever after.  You certainly deserve it.

Thank you so much!

Sincerely,

Mike

 

vulcanBMk2
Jun 09, 2016 10:58 am

July this year is the Royal International Air Tattoo at RAF Fairford, UK, and as usual, I shall be there (probably for the Sunday show). Entrance has gone up to a staggering £49.00, but it's well worth it. There are loads of new things this year: F35 & F22 from the USA, plus Migs from Poland & the Czech Republic. All along with display teams from around the world. Just got to hope that the weather holds up.

 

Check out participating countries/planes here: http://www.airtattoo.com/airshow/aircraft/confirmed-aircraft

 

 

 

 

 

 

 

ChrisP
Jun 09, 2016 11:21 am

£49 for an Air Day? Gosh, I'm sure entry wasn't that eyewatering (by comparison) when we went to Biggin Hill every summer as kids. I suppose the Govt has privatised so much of the RAF now that they have to make a profit somehow......?

vulcanBMk2
Jun 09, 2016 1:17 pm

Chris, the whole show now lasts three days with a three-week setup time and 12 months of organization time, backed with hundreds of full- and part-time staff. All visiting air crew and ground crew are fed and given accommodation in and around the surrounding area. So, fuel, equipment, and participant transportation is a big job. Fuel for participating teams/solo demos may be paid for by RIAT. Any profit made all goes to the Royal Air Force Benevolent Fund, a charitable good cause. A simple air day has become a multi-million-pound week of high-speed noise and fuel burning, supported by air forces from all four corners. The display is three days x eight hours long, not really a day out for "ban the bomb" or green eco-warriors.

LadyHope
Jun 13, 2016 1:42 am

Hi Marsha, I read your post and am so sorry that you have to endure three months of treatment. I hope that you respond well to the medications.  You will be in my thoughts and prayers for a quick recovery.  It was nice to meet you at the conference in April.  It was a fun weekend and very uplifting.  Take care and keep positive.  Your posts are always very inspirational.  LH

lavern
Jun 17, 2016 3:07 am

Mike,

I appreciate your thoughtful response.  Feeling isolated is very frustrating, but reading your response and other discussions makes me realize that I am not alone in this daily struggle. 

There are lots of good days and days where I just cry, but hopefully the positive ones will prevail.  At the end of the day, it is our attitude that plays a huge part in how we feel.  And, as time passes, I realize that we have the ability to change our attitude if we want to. 

I've never been the type of person who gives up, but there have been moments over the last two years where I wish I would have been more prepared for what life would be like after this surgery!  But, then I remind myself that without that surgery, I probably would not be alive today, so it brings me back to reality.  

I will wake up every morning with knowing that I am going to make this a good day! 

As the saying goes......."have no colon, but keep on rollin'"

 

 

iMacG5
Jul 05, 2016 9:57 pm

Hey Lavern, I wasn't around for a while and I wanted to thank you for your note.  You are certainly learning as you go and you're teaching us we can do the same.  I like that you never give up and love your attitude toward every day.

Sincere thanks,

Mike