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Meet and talk to 19,873 OstoMates.
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Living In The Moment And Enjoying The Pleasure Of Pain Free

Posted: Mon Jun 15, 2015 5:43 pm

I have been seeing a lot of comments these days about living in the moment and I think that I finally get it!

There have been times when I am in pain. But, OH how great I feel when the pain is gone and I realize that I am not in pain anymorecool.

It's easy to know when I am in pain or discomfort from my ostomy. But when the pain and discomfort is gone, I don't always notice that. So, I have started to ask myself how I feel on a regular basis and when I realize that I feel free of pain, I am so happy and treasure that moment of realization. It's like "hey I am free of pain, Yippee"tongue-out

I was wondering if any of you out there ever have that time of realization and if you feel greatful for it?

Posted: Mon Jun 15, 2015 8:00 pm

Hi, 

I'm Marsha, and  I've posted about this a few times.  I have my ostomy for more than 50 years, so that's rarely an issue for me.  But as I've gotten older, ( I'm 66)  I've developed so many conditions that cause pain, that I was finding it difficult to deal with ( kidney disease, arthritis, disc disease/ back, sciatica,  diabetic neuropathy to name a few).  I also can't take aspirn ( stomach issues) not supposed to take Tylenol, which can be toxic to the kidney, and Ibuprophin, is a "no no" for another reason I can't remember.    So what's the alternative....live with the pain.  For awhile, it was really getting me down,  until I decided to rate my pain from 0 ( no pain) to 10 ( extreme pain)   I realized that all pain can't be a 10....   And so when I wake up each morning, I take an assessment....if I get up, wiggle my toes, get to my feet, do a few stretches.....and there's no *rateable pain, it's a pain free day. I'm happy!    In the past one day of pain....or even a few hours, could ruin the day or even a week for me.   Arthritic feet & ankles....yes.  Pain yes.  Is it going to keep me from going into NYC for a Show?  No way.  I ignore fashion, put on my sneakers and walking shoes, and go out for a good time.  I may need to keep my feet up the next day....but that's ok.   I'm glad you discovered how to "Live in the Moment".  Don't let the few bad days, ruin the good days. 

Best Regards, Marsha

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Posted: Mon Jun 15, 2015 10:57 pm

Hi Marsha

I read your bio and it seems we have many similarities. I am 62 year old woman and I had my iliostomy from chrons when I was 20, so over 40 years ago. I was married when I was 18 and stayed married with that husband for 18 years. I subsequently remarried and that didn't work out either. Now I have been in a committed relationship for the last 13 years. I don't have any children but I have never let my ostomy get in the way of anything that I every wanted to do in life. I have worked in executive management for many years and travelled to Australia, Alaska, Europe and Canada. I love to dance, golf, bowl and play bridge.

I don't usually have any pain from my ostomy but once in a while it feels like I am having some cramping that normally goes away quickly enough. I sometimes have lower back pain leading to sciatica but thankfully, I haven't had this for the last couple of weeks. It was only yesterday that I realized that I have been pain free for the last couple of weeks and that's what inspired me to write my last blurb.

It is typical for all of us to ask why we go through our trials and tribulations. Sometimes we come out stronger and more greatful. I pray I will always do that.

Thanks for your words and may you too always stay as positive as you are now.

Many Blessings, Redondo

Posted: Tue Jun 16, 2015 6:50 pm

I have had a wonderful trip to the UK -- would love to share places to see --- I had a difficult time keeping the bag attached to the skin -- like it was replacing ever 2-3 hours and I did not have that problem before the trip or  once I was there..mystery that I could have done without!!

 I found it all very exhausting, but well worth the time and energy.  I am planning on another trip over there this coming year to see the grand children! If you have "must see list" other than London and Nottingham area, I'd love to know some special places or things to include.  

 

 

Posted: Tue Jun 16, 2015 10:23 pm

Hi Ewesful

There is a little island near UK called Malta. I was born there. Many think that it is a very pretty little island. Europeans find it to be inexpensive compared to other European places. Google it and if you are interested in going there, let me know and I can recommend places to stay.

Happy Travels

 

Posted: Wed Jun 17, 2015 12:03 am

Hi,  Redondo & Ewesful,  

Glad the difficulties with your pouch hasn't ruined your desire to travel Ewesful.   I have to do 19+ hours, of just flying time from New York  in the states, to to see my grandkids in Australia.   But this year, they're coming here ...in December.  Their parents want to show them "snow"!  Brrrrr 

 Redondo, Are you sure you mean Malta?    I'vwe been there,  and it's actually off the "boot" of Italy, and I think a little west of Sicely.  I went  for a long weekend ( yes folks, I travel that far for a 3 -4 day trip)  and we took a hydrfoil to Sicely for the day".   

I had a fabulous trip/ tour, when I went to England...  Started in London for 2 days, before embarking on our "travels North.....stopping at points along the way. I'd love to go back to the "Lake District/ William Wordsworths home .  We spent one day in Wales  ( not enough time) and then 3 days in Scotland ( not enough time) and then drove down the East side of England on the way back to London.   ( Went to Cambridge & to Oxford)   We slso  spent some really nice time in York and loved the narrow winding streets, and the little shops and restaurants. But for the most part, it was a "look / see & get back on the bus" kind of trip.  So I'd really love to go back, and stay put for a while.  I'd like to go to Cornwall.....and spend some time at the resort/ beach towns.    So much to see and do.....just need the time and the money, and of course good health.  To have all three together, is truly a blessing.  We can meet in the chatroom on night....to talk about travel.  Anyone else interested, jump right in. 

Posted: Wed Jun 24, 2015 12:15 pm

Hi

Sorry that I haven't written in a while. My mother has been visiting me from Canada for the last couple of weeks and she will be here for another 2. So, it is difficult for me right now to keep up with my emails and such.

I would like to chat sometime but I haven't figured out how to do that on this site yet.

And... yes, I definately know that I along with the rest of my family were born in Malta. I know Malta is a little further from the UK but many from there like to vacation in Malta. You are correct about it's location. It is 60 mi S of Sicily and 90 mi N of tip of Africa.

It is ironic that you actually visited Malta. I hope you enjoyed itcool.

I enjoyed Austalia as well. For some reason, maybe because of the UK affiliation, many Maltese imigrate to Australia. In Melbourne there is a "little Malta" and I have relatives there. I also have relatives living in the UK and I myself was raised in Toronto Canada. Until 1969, Malta was under British rule and then became independent. So, it was easier for Maltese to immigrate to UK affiliated countries. I joke that there are probably more Maltese living off of Malta than there is on the island.

Anyway, I hope to catch you back again soon.

Live your bliss and many blessingsinnocent

 

Posted: Thu Jun 25, 2015 8:50 pm

I am greatful when for a moment I forget I have a bag

Posted: Fri Jun 26, 2015 12:51 am

Hey Moonshine

Hopefully you get many more moments to be greatful for. Over the last 40 years, I barely even realize that I have a bag. It's just become such a part of me that I don't even think that way or even remember thinking that way.

Take care

Posted: Fri Jun 26, 2015 1:22 am

Hi Redondo,

I absolutely LOVED Malta, and I was only there for a "long weekend".  It was a $$$  bargain ...and one of the first international trips I took.   I was surprised, because I thought it was going to be more like Italy.  Instead, I found it more "mid Eastern", and so interesting.  I loved the geography, the people, the food...   I went with a friend, and a group of his friends, but three of us paired off, and had a great time on our own.  We unknowingly grossly overpaid our taxi driver....to take us on an evening tour, and at the time didn't understand why he was waiting for us in the morning, ready to take us out again.   I'm sorry I didn't write a journal of all the things we swas and did in four days.  One of the most moving was a group of "holy" people and residents walking through the streets at night.  The views of the waterfront areas were fabulous, and we also took a trip to an "old walled city" and did a tour in a horse drawn carriage.   The trip was a long time ago....but was magical.   And because we were so close to sicily, we took a day trip by hydrophoil.....left at 5 am, and didn't get back & through customs until 1 am.   But we 'danced" in the craeters at Mt. Etna, before it exploaded again.....and I could go on and on...   I guess you can tell, I love to travel.   So much to see and do...and so little time & money...But I'm grateful I've done as much as I have.  

 

Marsha

 

Posted: Fri Jun 26, 2015 1:39 am

Hi Marsha

I am so happy that you enjoyed Malta. I know the walled city that you mention. It is called Medina. It was originally Malta's name. There is unbelievalbe so much history for an island that is only 17 mi long. You gave me goose bumps speaking about some of these areas. I too love to see different places and would love to go back to Malta again soon, except I hate the travelling part.

Between you and me though, I think that I was fortunate that I wasn't living in Malta when I had my Chrones problem and needed my ostomy. I don't know if they would have been able to look after me as well.

Where do you live now?

Posted: Fri Jul 03, 2015 12:03 pm

My entire life revolves around pain/disability from the ostomy. I have no problem in life that wouldn't be instantly solved by not having an ostomy. I had more fun in a weekend when I was healthy than I do in a year now, and probably suffer more in a week than I did in a year of living normally.

It helps to reorganize your life around the stoma and isolate yourself from other people, but there's only so much you can do.

From your post it looks like we got opposite results. It raises the old question, how many people end up like you, and how many end up like me? There are so few QoL studies, and most rely on self reporting from a small group of older patients, who were usually dying of cancer. This in no way provides an accurate picture for younger, healthier people considering an elective stoma.

So you end up playing Russian roulette with no idea how many chambers are loaded. And if you lose you'll spend the rest of your non-life bitterly regretting it.

Posted: Fri Jul 03, 2015 2:45 pm

Hi Jpeters,  I just read your post and wanted to say Hi.  We have not chatted in a while.  To comment from a previous post of yours, I often look at ostomy appliance advertisements and wonder do the models have ostomies.....?  It should be a prerequisite to making the ad...don't you agree.  Yes, I can relate about the fun aspect.  I went to a baseball game the other day in the city and, of course, had to use the bathroom.  What a PITA....I should use another expression...LOL  I was having issues trying to empty, standing up, in a dirty stadium, well used bathroom.  I managed but it was not like the old days.  I sometimes feel that my life revolves aroung my stoma.  I agree with you about the medical studies.  It appears that the medical profession is pleased with the ostomy as it saved a life...these posts seem more accurate about what life is really like living day to day with an ostomy.  Will you still be going to the conference in Sept?  Take care.  LH

Posted: Fri Jul 03, 2015 4:11 pm

Hi LadyHope. Its nice to hear from you. Hope you're doing well, and enjoying your 4th of July weekend. I agree, supply companies should use real ostomates in their ads. They make reasonably good products, but they also have a major financial incentive to convince people to get ostomies. They bombard ill people with ads showing how great life will be when you're wearing their bags. For some people its true, and for some it isn't. You're absolutely right about the doctors. Do you think they'd feel differently about the stoma if they had to get one? Maybe if surgeons had stomas, we'd see more progress in this field. I am still planning to attend the conference, and looking forward to meeting you & your husband there. Best, JP

Posted: Fri Jul 03, 2015 8:54 pm

Very interesting that you bring up the point about the doctors, nurses and ostomies.  When I was very ill, I asked every single medical professional that I came in contact with if they had an ostomy.  None of the people who were directing me had an ostomy.  Guess what....finally I met someone at the UOAA conference who was both an ostomate and a practicing wound care nurse.  As the saying goes...she talked the talk and walked the walk.  I was very happy to meet her.  She shared her story with me and assured me that once I got used to the "new normal" I would be okay.  The new normal is not as new but I try to take it one day at a time.  I keep telling myself, maybe one day a medical genius will develop something to help ostomates...maybe grow a new colon in a lab, repair a damaged rectum, cure GI disease, cure cancer, repair damaged intestines, etc.  I keep looking forward with hopeful anticipation.  Maybe one day soon.....LH

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