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long question for newer k-pouchers
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Posted
I,m 8 months out and have some questions. First off sometimes I empty into a measuring cup and there have been times that I emptied 28 - 30 oz, so I know my pouch has streached to good capacity, and yet sometimes I feel so full and only empty 12 oz. Sometimes I sleep through the and sometimes not. My stoma feels sore at times, nothing really painfull but just alittle sore.Does this sound like what your going through and does this get any better or is this it?
 
Posts: 217 | Location: Elko, nv. | Registered: March 20, 2007Report This Post
Picture of JaniceM
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I'm an oldie but what you're describing has been my normal all these years. Sometimes the pouch feels so full and a little air comes out. It's different, day to day, night to night.

My stoma gets sore if I have to irrigate or empty more then 4 times a day.


Proctocolectomy 1979; Kock Pouch 1980; valve repairs 1980/83/85; Cholecystectomy (gallbladder) 1987
 
Posts: 788 | Location: Orange County, CA | Registered: May 13, 2008Report This Post
Picture of skn69
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Hi Dyna,
Your pouch contains more than just 'stuff'...there is also a mighty quantity of air which puts pressure on the pouch too...there are days that I pretty much shock myself with the quantity of stuff that comes out and other times I feel like I could fill a tire with all of the air inside of me....sleeping through the night is great...I manage to do it about once a month if I am lucky unless I don't eat dinner. as for the valve pain..it depends on the roughness of the intubation, frequency and of course the number of ins and outs during the intubation (if I have to keep pulling it out to pluck stuff out of it! Roll Eyes)I also feel pain if I am too dry (dehydration) even if I use lube...plus all of the physical activity in a day can effect it (squating down to clean floors, picking up grandkids etc..)I even bleed occasionally during rough intubations...
You might want to keep a pouch diary of stuff that works, hurts and helps but in the long run you pretty much figure it out...it is always different for each poucher...
Sharon


It could be worse...oh, wait..it already has been! then I guess it can only get better from here....
 
Posts: 2440 | Location: Paris, France | Registered: July 29, 2007Report This Post
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I've only had my K pouch 8 months as well and I had the exact same concerns. (It's hard to know what normal is). I'm trying to get used to the frequency and 3:00 AM wake up call. Sharon's right though if you skip dinner you sleep longer. Not a good trade off, but it's true.
As for the soreness my Physcians Assistant and a Physical Therapist friend reminded me that the scar tissue is pulling and stretching which causes soreness and pain. the PT suggested massaging around the stoma. Massaging helps stimulate muscle growth and deters further scar tissue growth. I think it's helped me. If you think of a grid pattern like a tic-tac-toe square with the stoma in the middle and massage each square you'll work the necessary areas.
Now if someone can come up with a miracle cure for the gas (air)
 
Posts: 15 | Location: Lubbock TX | Registered: April 03, 2010Report This Post
Picture of skn69
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In France they say 'breakfast like a king, lunch like a prince and dine like a pauper'..they usually have big lunches and light dinners here..(maybe because traditionally the toilet was outside on the landing???? Big Grin 4am with your butt hanging out over a Turkish toilet on the rooftop in the winter discourages heavy evening meals Big Grin)
But it works for me, I stick to a soup or just a bit of chicken and a light green veggie..no desert and not bread...and I still usually wake up at 4 am!
Sharon


It could be worse...oh, wait..it already has been! then I guess it can only get better from here....
 
Posts: 2440 | Location: Paris, France | Registered: July 29, 2007Report This Post
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