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Hi- I am brand new to the Indiana Pouch, just had it
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waterlover
- Posts: 15
- Joined: 2006-05-03 22:59:00
Hi- I am brand new to the Indiana Pouch, just had it
placed by Dr.Shlomo Raz on August 27, 2007. Very difficult surgery, very difficult tube removals, and I live in Virginia, and my surgery was a at UCLA Med. Center in los Angeles. My urologist in Virginia tells me that I am his first Indiana Pouch pt, so I am learning more from pouch friends here. Dr. RAz shared with me everything he knew, he is a great surgeon. I had interstitial cystitis, and here are some of the problems. I sat in church yesterday for 2 hrs and kept thinking and feeling like I wanted to pee. It went away when I got home and drained and squirted the perineum with warm water. When do those nerves die.? Sleeping the night is very hard, have to get up about 2 times to empty the pouch, I am feeling increasingly sleep deprived and don't know what to do. Have started wearing a diaper to bed. Anyone have any suggestions on how to move along. The resident at ucla gave me some Foley caths and told me to put one of them in when the sleep deprivation gets real bad. Except that he told me -try not to because at night when we sleep that is when the pouch stretches the most. I empty with a Bard red rubber coude tip 14fr. I am getting a little depressed from all of this. I had ovarian cancer with chemotherapy last year and this is 100 times harder to survive. Please help, Aileen
I've had my "modified Kock pouch" since June 2004.
I remember having the urge to void the old way (and would even dream that I had) but (and this is a positive statement) I really can't remember when that went away, but it did.
I would wear an absorbent pad to bed at the beginning so that I wouldn't wet the bed (still sometimes think that I should start again as getting out immediately upon waking was not my habit and sometimes I linger in bed too long.) If the diaper works for you, just use it. That will also address allowing a greater accumulation during the night because (at least I found) that the leaking happens just enough to relieve some of the pressure and still get some more sleep while giving the pouch a chance to stretch.
I remember that when I finally started back to work (part time), I seemed to be "leaking" often (and would say,"whoops, I must have spilled some water on my stomach" if anyone spied my wetness)
For me, the memories of the difficulties are also fading and now my problem is to remember to void "by the clock" during my waking hours, because I often forget and am now putting myself in the position of "leaks" because I have gone too long.
August 27th sounds VERY recent to me. Hang in, and in far less than three years, you will be the one trying hard to remember "the early days" to provide support to the next person.
I remember having the urge to void the old way (and would even dream that I had) but (and this is a positive statement) I really can't remember when that went away, but it did.
I would wear an absorbent pad to bed at the beginning so that I wouldn't wet the bed (still sometimes think that I should start again as getting out immediately upon waking was not my habit and sometimes I linger in bed too long.) If the diaper works for you, just use it. That will also address allowing a greater accumulation during the night because (at least I found) that the leaking happens just enough to relieve some of the pressure and still get some more sleep while giving the pouch a chance to stretch.
I remember that when I finally started back to work (part time), I seemed to be "leaking" often (and would say,"whoops, I must have spilled some water on my stomach" if anyone spied my wetness)
For me, the memories of the difficulties are also fading and now my problem is to remember to void "by the clock" during my waking hours, because I often forget and am now putting myself in the position of "leaks" because I have gone too long.
August 27th sounds VERY recent to me. Hang in, and in far less than three years, you will be the one trying hard to remember "the early days" to provide support to the next person.
I can relate to your problems very well. It's tough getting the IP undercontrol, but it will happen. I had a schedule to follow on "draining" and followed it pretty closely. It just has to "open up" "stretch" and "get used to doing something new". But it will happen, given time.
The draining schedule I had, was as follows:
WEEK DAYTIME NIGHTTIME
1 2-3 hours 4 hours
2 3-4 hours 5 hours
3 4-5 hours 6 hours
4 4-6 hours 7 hours
5 as needed 8 hours
I've found that I get a "gassy" feeling when I'm full. And, I can only go 8 hours at night, if I've slowed down on the liquid intake after dinner.
For the first 6-8 months, my body told me if I was pushing it by getting a little kidney pain. Then, I knew I had overextended my draining time, and quickly got the pouch emptied. When that happened, I'd usually thoroughly empty again in a couple of hours, and thoroughly irragate the pouch, just to help make sure I had not pushed my kidneys too far by backing up the urine into them. That's really not good!
Keep the faith. It will happen. Maybe your time schedule's a little different, but in time, it will all become very natural to you, and you'll hardly remember the adjustments you've had to make. Mine's be in for a year, and I can only vaguely remember all the fears, pain and issues I initially had.
Another day above ground, and it's a victorious one!
The draining schedule I had, was as follows:
WEEK DAYTIME NIGHTTIME
1 2-3 hours 4 hours
2 3-4 hours 5 hours
3 4-5 hours 6 hours
4 4-6 hours 7 hours
5 as needed 8 hours
I've found that I get a "gassy" feeling when I'm full. And, I can only go 8 hours at night, if I've slowed down on the liquid intake after dinner.
For the first 6-8 months, my body told me if I was pushing it by getting a little kidney pain. Then, I knew I had overextended my draining time, and quickly got the pouch emptied. When that happened, I'd usually thoroughly empty again in a couple of hours, and thoroughly irragate the pouch, just to help make sure I had not pushed my kidneys too far by backing up the urine into them. That's really not good!
Keep the faith. It will happen. Maybe your time schedule's a little different, but in time, it will all become very natural to you, and you'll hardly remember the adjustments you've had to make. Mine's be in for a year, and I can only vaguely remember all the fears, pain and issues I initially had.
Another day above ground, and it's a victorious one!
I've had the indiana pouch for 7 years now. the first year is definetly the toughest. It will get easier for you. With me it was my faith that helped me through the toughest times. so i pray that it is becoming easier for you. I don't have the same problems with the urge to urinate because i haven't had a "normal" bladder since birth. please let us know if you are doing better.
Waterlover,
My wife's pouch was done October 8th at MD Anderson. What we've learned is she stops drinking at 5pm, drains at 8pm, I awake her at 11:30 after which she generally sleeps the balance of the night. Perhaps one night out of the week she will experience slight draingage. She wears Depends and a pad to aborb any leakage. In her case stopping fluids at 5 is the key to a good nights sleep.
As an aside, have you ordered a medical alert bracelet or necklace? Good luck, you will adjust and find a schedule that works for your lifestyle.
My wife's pouch was done October 8th at MD Anderson. What we've learned is she stops drinking at 5pm, drains at 8pm, I awake her at 11:30 after which she generally sleeps the balance of the night. Perhaps one night out of the week she will experience slight draingage. She wears Depends and a pad to aborb any leakage. In her case stopping fluids at 5 is the key to a good nights sleep.
As an aside, have you ordered a medical alert bracelet or necklace? Good luck, you will adjust and find a schedule that works for your lifestyle.
Bill