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unexpected kindness trumps unexpected disease

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

HOW LUCKY AM I and grateful.

I got this from a friend out of the blue this morning.

"Hi Ellie and Peter

Just wondering how you are both going. I have been thinking of you and hoping that everything is going as well as possible.

I thought you might both like a bit of a break – I attach a gift certificate for Aqua Dining at North Sydney. Not sure if you’ve been there but it’s in a lovely location under the bridge with a great view across the harbour and the food is pretty fab too! I hope you get a chance soon to have a bit of time out and enjoy the gift certificate.

Kind regards

Julie"

the bag burst alarm went off about 5am, sure enough I turned on the light and it was a real alarm.

But a small miracle, the diarrhea had completely settled so the burst was a good one ie not a huge messy disaster.

Did not even wake the wife as I spot cleaned the sheets, doona and protector. I have my own special single sheet protector that I sleep on. Its saved the day many times now.

so I wakeup. cleanup and lookup my emails. My newest email is above.

Every call, kind gesture builds hope and strength.

I hope we all get a little unexpected kindness today, gods know we need it.

love to all,

Pete

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Do you have any or tried any bags with a built in vent system ??? If not let me send you a couple to try......buzz

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

my bags got a vent.

my issue is the high flow issue of diarrhea and that its kind of unexpected and problematic.

i don't think a bigger bag would help me, its just the volume and watery nature of the bag contents.

i sleep on my side, unless I am having a bad night and I am to scared to turnover as I know the results.

I sleep deeply, the bag fills, a little turn POP. when diarrhea bad I wake hourly and empty. I also got be awake and take meds and alternatives as I cannot let my dehydration get out of hand.

thanks for you kind offer buzz.

me and bags don't mix.

hugs,

pete

tanker sgv's picture
tanker sgv
Posts: 125
Joined: Nov 2010

First off great post and enjoy the dinner. Second my good news is thanks to a post called "a message to caregivers " I feel closer about my moms passing. First time I cried from a post and the tears of sadness left my soul as my heart was filled with warmth. And finally I know u weren't posting bout ur bag BUT no bag should pop while sleeping. So something I came up with that worked for my mom was (don't laugh I know how us men can be about chick products ) take a pair of pantyhose and cut the legs off so your left with a big belt. Slip that over your waist at night, making sure the bag is fully covered . What that does is hold the bag firmly in place yet still allows for expantion and doesn't obstruct the vent and lets ur skin breath. Heavy bags for high flow side sleepers often tug on the seal around the stoma. You can also double the pantyhose if needed. Also with the amount of air and liquid involved with diarrhea try poking a few pin holes on top of the bag and taping a few napkins over the holes, that allows liquid to drain when beginning to overflow in a contrled manner, vents that r in the bag only let air out through internal preassure . Hope this helps it took me awhile to tune the idea for my moms issues with "bag bombs" but once figured out she slept throu the night

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

What a cool friend. I hope you and Ellie have a great dinner.

Aloha,
Kathleen

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Yes it seems to me that in my darkest moments, something happens to brighten my life...

I hope you enjoy your special night!!! What a wonderful friend you have!!!

Hugs, Kathi

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

unexpected kindness ...

I wanted to share this, hopefully to encourage us all a little.

our disease is so terrible.

we have so much suffering I feel and see on our board.

may I suggest the only way to combat the level of pain we see everday here is to increase the volume of love and care we give. it makes sense to me. somedays it takes courage just to read the posts we have here. thats why I like some of the good news posts. We need to post in our dark and challenging moments, but its worth being aware that we are sharing our pain amongst a large group, but that our individual and collective capacities to cope is not infinite. I pray we all have the strength to live as well as possible with this disease.

hugs,

pete

dorookie
Posts: 1736
Joined: Jul 2007

Sorry about the bag, but what a nice surprise from your friend, I hope you two enjoy it so much...

HUGS
Beth

dorookie
Posts: 1736
Joined: Jul 2007

Sorry about the bag, but what a nice surprise from your friend, I hope you two enjoy it so much...

HUGS
Beth

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

it was the best surprise
hugs,

pete

AnneCan
Posts: 3692
Joined: Oct 2009

Pete,

That is a very thoughtful friend. I hope you enjoy your dinner.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

That bag issue is a bummer, but I love the gift from your friend. What a nice gesture! I am trying to spread a little kindness every day in my own little ways. Enjoy your night out!

*hugs*
Gail

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

a little kindness goes along way.
have a greet day,
pete

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hey Pete - What a wonderful gesture from your friend! I hope that you and your wife have a lovely evening together. (It's so nice to read a post that makes us smile.) :-)

Luv,
Cynthia

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