I also have a neo. I do find when I’m tired that I'm a little more susceptible to the odd leak. This is partly due to me forgetting when i last emptied because i’m half asleep! Also, I think i recognise that raw feeling. This too comes with tiredness, but i’m glad to say it happens less and less often since my op.
Hi ya Melodie and Rosebud,
I think i told you that my "Hal" does not like the dye from the CT scans and acts up for several days....and if memory serves me right you just had a CT scan.
And as for rawness...the inside of the new pouch has lots of memory nerves and i sometimes hit one of those...ouch...and it will happen when i'm looking for those pockets or i think i haven't emptied enough..its "Hals" way of telling me to get out of there i guess. If its happening all the time why not switch to a non-latex catheter ...see if that makes a difference. Since your skin is so sensitive to latex it would make sense that rosebud doesn't like it either. Just a thought.
Yeah Mel I would think of a medical retirement and also Social Security has disability if you can't do your job right because of a medical problem. I get SS Disability because I have an inner ear infection which causes me to get dizzy at times and when I had a dispute with the company ( union job ) they had their guys and the union was representing me but they found out about this inner ear from my medical files creeps well I didn't have much of a choice so I took the disability. If I was still trucking no way I could still do that job with this problem, ain't life wonderful. Joe
I have been been doing much better in last two weeks...seeing much less mucus and haven't had any surprise leaking for more than two weeks. Then yesterday I was quite surprised to find myself leaking twice when it had not been that long since I had emptied. I also saw quite an increase in mucus but had not eaten anything dairy or new...except for one piece of chocolate with rum in it. Yum! My spouse tempted me with that. I have to indulge myself sometime. ;D
Anyway, usually I get some tightness, cramping like discomfort which tells me I need to visit the bathroom... and then I have a personal conversation with my stoma, Rosebud. And yes, I do talk to her, and my spouse thinks I am nuts but that's OK. Anyway, yesterday, even after emptying during the p.m. hours, I had enough discomfort to dig out the pain pills. Finally at 9 p.m., I went to bed and slept 12 hours! I never sleep that long..Rosie woke me up twice and I emptied.
Does anyone find that if you get too fatigued, that you leak more? Initially I had planned on returning to work in November but that hasn't worked out, and so now have moved my return date to mid January. The ways things are going, I'm wondering how long it takes for these bladders to settle down to some schedule or maybe some never do...and should that be the case for me, then I need to look at a medical retirement. I have a 90 minute commute each way and I know I'm not nearly ready to be gone from home 12 hours a day, 13 if I stop at the grocery store.
Also, do any of you ever have a sensation like you feel "raw" in the bladder? That was the only way I could describe the feeling to my doctor and of course, he couldn't relate. It seems I have it after I have emptied so maybe it's just the catheter irritating the bladder when it goes into those pockets. ??? Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright