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Welcome to MeetAnOstoMate
The best place to meet and talk to other OstoMates with 17,396 Members.

Let's think

Posted: Tue Jun 20, 2017 3:06 pm

For all the time we spend thinking about stuff other than our afflictions, that’s time we’re not really afflicted so much. Well, it’s still there. The ostomy, the diagnosis, the discomfort, the new lifestyle, all the crap we dealt with and some we’re still dealing with. But when we’re not dwelling on those things it can be easier to tolerate. It’s like the first time I actually forgot about my stoma. I was raking leaves, really working hard and it was cold. It was months after my surgery but the first time I actually was not conscious of the appliance hanging from my belly. I felt NORMAL for a few minutes and it was good.
So let’s talk because to do so respectfully we’ll need to think and it could be about stuff that takes us away from our grief. Along the way we might develop a sense of normalcy despite the changes we’ve experienced.
Respectfully,
Mike

Posted: Tue Jun 20, 2017 4:09 pm

Well said Mike!

In the vernacular - we call it 'distraction' and it can work very well if given half a chance.

Best wishes

Bill

Posted: Wed Jun 21, 2017 5:35 am

Hi Mike,

Great thoughts on feeling "normal" again. The issue I have is that I can't feel normal because I'm still in pain. Had 3 major intestinal surgeries in a 9 month period, the last being in March of last year. I have a permanant ileostomy and have been left with scar tissue and adhesions in my intestines and abdominal cavity. Walking, lifting, moving around in general is very painful. Went and got 3 opionions and all said the same, nothing we can do. I can't work, have a very difficult time just doing household chores (some I can't do at all). I was sick for a long time and being told I would be able to live a normal life when all was said and done was my motivation to keep going and keep spirits up and now I feel as though the end of my tunnel caved in and there's no light. I barely leave the house as walking for even 15 minutes or sitting in a car is so painful I can barely stand it. Trying very hard to adjust to my new normal and struggling terribly. Not much of a life and there are many other things going on in my life that make it that much more challenging. I really don't want to be here anymore and basically waiting for something, anything to kill me so I can be done with this. I am very happy for you and your successes and hope this continues for you. Thanks for listening to my rantings.

Sincerely, 

No end in sight (Darlene)

Posted: Wed Jun 21, 2017 9:53 pm

But wait! I have so much more to complain about!

Besides I can't think normalcy til I feel normal. I think getting to know the new normal will certainly help so I will try....

But I still get to vent right? And all the other things we post about. 

I try to end my rants on a positive note even though I'm clearly faking it...

I promise to find something good to say at least once a month. It should be easy for me because I'm well on my way to being well, thank the Lord!

charlotte 

Posted: Wed Jun 21, 2017 11:45 pm

iMacG5 I LOVE your post.

And it's fun how your writing is open and inclusive enough to generate so many varied responses! Great job!

Self-centered ME hooked onto the "finding a new normal" aspect of it. I've been having fun finding "NEW NORMALs" for a few years now.   And really I think that most of a "new normal" is really, in essence, "I've come to terms with whatever and got back onto my happy plateau."

Your post seems to indicate that you would prefer to forget your stoma. 

That's kind of a guy thing, really. 

Women (very Un-PC of me here, but let's all let it slide) women don't try to forget, they work to embrace.

 

 

 

Posted: Fri Jun 23, 2017 6:41 pm

Hey Darlene, I’m not expert on this stuff but reasonably familiar with lots of discomfort and pain after surgeries. Some is or was my own. There are lots of folks here who have gone through all kinds of things and we don’t want you to resign yourself to more of the same. We certainly don’t want you to resign. Don’t know anything about the medical expertise in your area, the affordability of care or anything that might lend to a more comfortable life but you must pursue relief.
Now, did I put enough pressure on you?
So sorry,
Mike

Posted: Fri Jun 23, 2017 6:47 pm

Charlotte, I was so disappointed. You didn’t complain; no vents, no rants. But then you rewarded us with some great advice. Thanks for sharing such a great attitude.
Sincerely,.
Mike

Posted: Fri Jun 23, 2017 6:53 pm

Hi NDY. Aside from your wisdom, you’re a generous soul and I thank you for your comments. Coming to terms might be difficult for some but reading how it works for you will probably be encouraging and they’ll be grateful to you down the road.
Learning from you,
Mike

Posted: Fri Jun 23, 2017 8:24 pm

In defense of myself and my many macho ostomates against the alternative facts that might suggest wimpishness, I'm going with Bill's "distraction" which sounds like I know what the heck I'm talking about.

Mike

 

PS:  OK, maybe the ladies do handle some things better.

Posted: Sat Jun 24, 2017 5:24 am

Hey Mike,

Yeah no pressure there : ) I live in Wisconsin and good healthcare is readily available. I actually went to 1 of the hospitals considered to 1 of the best in the state which is Froedert and the medical college of Wisconsin and the GI I saw there really tried to come up with some solutions for me but had no luck. She was pretty much my last resort. My sister also says not to give up but I can't afford anymore doctor bills to be told the same thing. 1 doctor told me to actually go to the Mayo Clinic. Insurance won't cover that so that's out. I really don't see anymore options for me at this point but I appreciate the pep talk. You're great by the way.

Darlene

Posted: Sat Jun 24, 2017 9:49 pm

Hey Darlene, Thanks for your kind words and really, no pressure intended.  I just hate to give up on anything and maybe that's because I'm not smart enough to know what's doable and what's not.  I would want to talk with my surgeon, my PCP, my stoma nurse and, just maybe, one might offer something the GI Dr. didn't think of.  In the meantime, please know lots of folks here care about you and might offer something none of us have thought about.

Wishing you the very best,

Mike

 

Posted: Sun Jun 25, 2017 8:47 pm

You need to see if the Dr can reopen and place the organ wrap under your skin.  My father and grandmother also had terrible scar tissue  Thankfully I was able to try out a new product and I cannot put in words  how pleased and thankful I am.  It works like plastic wrap in the sense that it replaces the lining between the offending organs/tissue and your skin so what is supposed to slipe and slide can do so.

Posted: Mon Jun 26, 2017 8:46 pm

The pain was so intense for years prior to my colostomy that I don't look upon my stoma as a deviation from 'normal.' It prevents me from having to deal with my former horrible daily-kidney-stone-like-fire-that-wouldn't-stop-burning feeling. Heck, I smile while having dinner out with my wife. Sitting amid a flurry of life and food and conversation and oh-so-quietly pooping. So what. I empty the bag and my 'normalcy' restarts. It's all good, folks. It's all better than good. I'm not stuck in the house in severe pain in the whirrled of shi- that wouldn't stop turning and swirling and enveloping me like hell on earth. My appreciation for the medical advances which made this recovery possible is endless. Hopefully you'll come to feel the same - this is my wish for you...   

Posted: Fri Jun 30, 2017 6:25 am

Hi Ewesful,

Thanks for the information. I will look into that. You know it's funny (and not funny ha-ha) that of all the medical professionals you go to for help never even mention that something like this is available. I was told nothing can be done unless scar tissue and adhesions affect any organ function and then they would go in and do something about it, so I have to be suffering even more than I am now to get help? Crazy. Thanks again and very happy for you and your success.

Darlene 

Posted: Sun Jul 02, 2017 4:48 pm

Easier to tolerate.....the new normal.......getting back into life......These to me are words that I hear almost daily. It is my new normal, otherwise where would I be.

It's easiest to tolerate when the output doesn't cause much noise and I too get to quietly poo......

Getting back into life, that's what keeps me feeling normal, it's a new day, and a new chance to make it better than yesterday. My life is full of distractions, some are minor and some not so much, but I do my best to keep focused on what matters most to me.

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