From: "David K. Kelmer" <[EMAIL PROTECTED]> To: William Willis <[EMAIL PROTECTED]>, quad-list@eskimo.com Subject: Re: [QUAD-L] more ditropan stuff Date: Thu, 13 Jan 2005 16:26:07 -0800 (PST)
Hi Larry,
Do you have access to water at night? I use a tube that I can drink with at night, and it helps keep my mouth from getting too dry at night.
With Love,
CtrlAltDel aka Dave C4/5 Complete - 28 Years Post Texas, USA
William Willis <[EMAIL PROTECTED]> wrote: I take one in the morning as soon as i get up. (ditropan) For some reason I hurt fiercely in that area when I first get up. Then another before bed if needed. I wake up at night and it feels like my tongur is going to break off. It also makes my mouth and tongue very sensitive. Even mild spices are a killer. Larry
>From: "David K. Kelmer"
>To: "B. Kimberlin" , quad-list@eskimo.com
>Subject: Re: [QUAD-L] pee through your belly button or close
>Date: Thu, 13 Jan 2005 13:48:56 -0800 (PST)
>
>Hi Billy,
>
>Thanks for your thoughts on Ditropan. I'm in the process of fine tuning my
>dosage after 28 some years. :-)
>
>With Love,
>
>CtrlAltDel aka Dave
>C4/5 Complete - 28 Years Post
>Texas, USA
>
>"B. Kimberlin" wrote:
>I thought I would add my two cents. Because I have a problem when dry
>mouth, it take half a pill in the morning and have been the afternoon.
>Billy from Tampa
>C2-3
>9 years post "David K. Kelmer" wrote: Hi
>Dana,
>
>I've been thinking of dropping from two times to once a day on my Ditropan.
> What time of your day do you take it? How much do you use?
>
>
>With Love,
>
>CtrlAltDel aka Dave
>C4/5 Complete - 28 Years Post
>Texas, USA
>
>
>
>
>Dana Miller wrote:
>Wow $1000 per month?? gees. I reuse 30 for at least 6 months, but this
>last bunch has been about a year I think. A box is about $60. I don't mind
>paying that especially since I do not have any Service dog expenses right
>now. Need to pay for something to go towards my rent so it does not go
>higher! I still use ditropan for bladder spasms but only one a day.
>take care,
>
>Dana and ?
>[EMAIL PROTECTED]
>----- Original Message -----
>From: "Liz"
>To: "Dana Miller" ; "quad"
>Sent: Tuesday, January 11, 2005 4:25 PM
>Subject: [QUAD-L] pee through your belly button or close
>
>
> >6 inches! I do not pee until the 10 inch mark! I highly recommend the
> > catheters that, in a bag. With practice you'll be able to independently
> > catheterize on your own and just toss ! ! the bag into the garbage.
> >
> > I get my catheters through mail order. Again you can ask for samples
>that
> > are free. I use A-med in Huntington Beach California. There's also a big
> > company in Georgia. The catheters are quite expensive. Mine are covered
> > by
> > Medicare. At the cost of $1000 a month.
> >
> > If you have Medicaid I believe that they are covered as well. Probably
> > easily. You'll need to have the doctors prescription.
> >
> > I must say that this is the best thing that I have ever done. I was
> > suffering from autonomic dysreflexia to the point of almost having a
> > stroke.
> >
> > I still take bladder medications to stop spasms, as they also stop the
> > sweating caused by the spasms.
> >
> > Everyone is different. Practice, practice, practice.
> > ----- Original Message -----
> > From: "Dana Miller"
> > To: "quad"
> > Se! ! nt: Tuesday, January 11, 2005 4:51 PM
> > Subject: Re: [QUAD-L] Help....
> >
> >
> >> Grin! Need to get rid of those 6 inchers! They are useless. The curved
> >> tip is a coude' tip. Get rid of the red ones too--unless you want to
> >> keep
> >> them 'in case', which I did a lot of! he! he!
> >> Not sure what you mean by going 'uphill' unless you mean 'up' into the
> >> catheter. That is particularly true if you are laying flat on your back
> > and
> >> need to cathed, it does take a few seconds longer to get it up and
> > out--make
> >> sure the end of the cath is "below" the stoma! Some nurses don't get
> >> that
> >> 'gravity' thing! Plus when taking the cath out-keep the cather "down".
> >> Otherwise what is in the catheter will drain back into the bladder.
> >>
> >> I cannot cath myself when laying flat, or laying on either side. To do
> >> it
> >>! ;! ; in bed I must raise my knees and the head. Raising the knees
>first will
> >> keep you from sliding down in the bed quite so much. When laying back
> > down,
> >> lower the head first, then knees. You will still slide, but not near as
> >> much. Gads, the looks and why's I get from nurses when I ask them to do
> >> that! They would just as soon pull me up in bed several times a day.
> > Thats
> >> not the point, "I" get uncomfortable squished down in the crease where
> >> the
> >> head comes up. I like my head touching the headboard whether I am on
> > total
> >> flat bedrest or not! Well, more venting. gotta go! Glad to be of help!
> >>
> >> Dana and ?
> >> [EMAIL PROTECTED]
> >> ----- Original Message -----
> >> From: "~LittleQuad~"
>
> >> To: "Dana Miller" ; "quad"
> >> Sent: Tuesday, January 11, ! 2005! 10:51 AM
> >> Subject: Re: [QUAD-L] Help....
> >>
> >>
> >> > girl right now i have so many catheters its crazy! i have all the
>ones
> >> > from b4 surgery, 6 inches long, and the ones doc office sent to let
>me
> >> > decide what kind i like...they are all 14 french tho..
> >> > i have 2 kinds long clear ones, one has a curved tip, i think its
>best
> > so
> >> > far...other long clear one has straight tip..the red ones are nice
>and
> >> > soft but too pliable...
> >> > will it take a while for it to get used to going kinda uphill? it
> >> > takes
> >> > some coaxing to get the last bit up out of the cath....yuk, can you
> >> > believe we are talking about this?? lol
> >> > anyway thanks so much, you've been my saving grace......have great
> >> > day!
> >> > amye
> >> >
> >> > Dana Miller wrote:
> >> > If you can tell when you need to pee, thats great! I can too, so I
>just
> >> > cath when needed--depends on how much water I guzzle at one time.
> >> > Timing
> >> > it
> >> > may or may not help now. What ever works for 'you' is the answer!
> >> >
> >> > I do have a stoma, the nurses etc. will call it an Indiana nipple. I
> > asked
> >> > one time why a 'nipple' and they could not really answer that. Mine
>is
> >> > about 2-3 inches to the right of my belly button. My scar runs from
> >> > my --well--groin area, up and around my belly button and stops about
>4
> >> > inches above my belly button. I hardly know its there (only because
>it
> > has
> >> > been there so long) but it comes in handy when someone is dressing
> >> > me--they
> >> > line the middle seam of the slacks/jeans up with the scar! ! ! My SP
>was on
> >> > the
> >> > other side very low down sort of where my leg and belly meet. I have
>no
> >> > idea if there is a scar.
> >> >
> >> > As for scars, get used to them! Over the years they will come. My
>back
> > and
> >> > right back thigh looks like a road map. But that is because of flap
> >> > surgeries. I used to be very picky about how my hands, elbows and
> >> > places
> >> > that people see every day, looked. I would see guys with very nobby
> > elbows
> >> > that were calloused over and the middle knuckle much taller and
> > calloused
> >> > than the rest of their hand. I have been lucky and have aides that
>put
> >> > lotion on every day. My fingers have stayed straight, but my right
>hand
> >> > fingers are curling 'up' a bit. Not so that it looks wierd or even
> >> > close
> >> > to
> >> >! ;! ; it, but it is harder for me to 'make' them curl.
> >> >
> >> > Your not vain, its normal for people, especially women, to want their
> > skin
> >> > to look nice! Once the SP is out, the place it was will close
>quickly.
> >> > Once the incision is healed to minimize the look of it, keep it
> >> > lotioned
> >> > or
> >> > moist with something. I have been seeing a advertizement about a
>cream
> >> > that
> >> > is supposed to keep scaring to a minimum.
> >> >
> >> > I get my catheters from my pharmacy now. I pay for them, but they
>last
> >> > a
> >> > long time. I buy a box of 30 and they deliver them with my meds. They
> > are:
> >> > Brand: Mentor
> >> > description: Self-cath coude' olive tip with
> >> > guide stripe (useless! the stripe)
> >> > size: 16 french
> >> > reference number: 816!
>! >> >
> >> > They are clear/white color with an orange end. The first ones I used
> > were
> >> > closer in color to the red caths, but were a bit browner, shorter and
>a
> >> > bit
> >> > stiffer than the red ones. Go to the pharmasist and see what kinds
>they
> >> > have or can get. The clearer colored ones are better as you can tell
>if
> >> > the
> >> > end is harboring gook or growing things! :) Can also watch the mucous
> > come
> >> > out! In the beging it is usual for so much mucous be produced that it
> > will
> >> > clog the SP or even the cath. Run water thru the cath and try again
>if
> >> > this
> >> > happens. If your SP clogs, irrigate. Do this on top of your daily
> >> > irrigations. Sometimes nurses may not want to irrigate an extra
> > time--get
> >> > the doc to write irrigate daily "and" prn!! Be sure to te! ll them t!
>he
> >> > way
> >> > 'you' want it done! Usually what they are vtaught is different, such
>as
> >> > 'not pulling out' they will let it drain out. That does not get the
> > mucous
> >> > out. Once they have done it a couple of times and see the amount of
> > mucous
> >> > come out, they will give in. If you get a hard head,. call the agency
> > and
> >> > ask for a different nurse! They will provide the irrigation kits too!
> > Tip:
> >> > whatever they do not use--KEEP! It will come in handy sometime! I
>have
> >> > a
> >> > bottom drawer of a dresser I use just for such things. Urine sample
> >> > bottles, iodine swabs, tweezers, lubricant packs, pads of any shape
>or
> >> > form,
> >> > tape--can 'never' have enough tape. Extra drainage bed bags, legs
> > bags-for
> >> > a while-60 cc syringes, just anything!
> >> >
> >> > This is getting long. Ask if you have any questions!
> >> > take care,
> >> >
> >> > Dana and ?
> >> > [EMAIL PROTECTED]
> >> > ----- Original Message -----
> >> > From: "~LittleQuad~"
> >> >
> >> > To: "Dana Miller" ; "Quad-list post"
> >> >
> >> > Sent: Monday, January 10, 2005 9:03 AM
> >> > Subject: Re: [QUAD-L] Help....
> >> >
> >> >
> >> >> wow i did it for the 1st tie at home! i have been dreading this
> >> >> enormously! it just looks so awful, as i hate any scratch! thanks so
> > much
> >> >> for the note, i must had read it 10Xs! i will try and be on a strict
>3
> >> >> hour regiment, unless needed before...as i can still tell when i
>need
> > to
> >> >> go...the nurse at hospital said i'd most likely lose it, thank
> >> >> goodnes! s
> > i
> >> >> haven't!!
> >> >> so you have a stoma also? where is yours? mine is like 2 inches to
> > right
> >> >> of belly button, and the SP is 2 inches below...temporarily! i don't
> >> >> think
> >> >> i'll have mine a year...i go back in 2 weeks and he mentioned
>removing
> >> >> it...hope so, it hurts my feelings to see how it rubs my skin and
> >> >> stretches it, my eyes water every time i see it...i must be a vain
> >> >> person....haha
> >> >> thanks a lot dana!!
> >> >>
> >> >>
> >> >> Dana Miller wrote:
> >> >> It will be fine! It will produce a lot of mucous at first because
>part
> > of
> >> >> your intestine was used and that produced mucous! It "will" bleed,
>the
> >> >> edge
> >> >> of the hole is tender right now. I kept a SP in for nearly! a "year"
> >> >> before
> >> >> 'trusting' that weird thing in my belly. Make sure you irrigate it!!
> >> >> At
> >> >> least daily. Do not be gentle about it! Put 60cc's of sterile water
> >> >> inn
> >> >> the syringe and shove it in! Then pull 30cc's out! When you pull
>out,
> > do
> >> >> not pull if you get resistance--the end of the catheter may be
>against
> >> >> the
> >> >> wall of your new bladder. Irrigate again. I irrigated at least twice
> >> >> or
> >> >> until it pulled back clear. It is amazing how much mucous can build
>up
> > in
> >> >> 24 hours.
> >> >>
> >> >> Between cathing, cover it with 2 x2's or a 4x4. It will keep the
> >> >> irritation
> >> >> of clothes down. When you do cath, make sure you get far enough
> >> >> in--the
> >> >> first few weeks of cathing, if my doc did it, I would be
>flabbergasted
> > as
> >> >> far in she would put it. The type of cath I use, only about 5-6
>inches
> >> >> sticks out in order to get it all the way in. I really should
>measure
> >> >> that.
> >> >> I will let you know what kind of cath I use as those red rubber
> > hospital
> >> >> kind might as well be a piece of spaghetti! Plus they drain slowly.
> >> >>
> >> >> Do you still have a SP in? Using that at night gives the hole a
>chance
> > to
> >> >> rest and the sides to heal a bit. If the cath will not go in easy,
>if
> >> >> there
> >> >> is resistance, take a deep breath and let it out--relax! And keep
>your
> >> >> water drinking up! It will help expand the new bladder--altho if you
> > are
> >> >> cathing only every ! ! 4 hours, I would cut back on the water, or
>just sip
> > it
> >> >> now and then. If you drink a whole glass it will hit in about an
>hour
> > and
> >> >> you will need to cath every 20-30 minutes, if that much, as your
> > bladder
> >> >> will not be able to hold that much liquid at a time. If your are
> > leaking,
> >> >> up the caths to 3 hrs.
> >> >>
> >> >> It will take quite a while to get used to it and to the new feelings
> > you
> >> >> will get. They re-arranged your insides! They will be sore. A
>picture
> >> >> will help. Sometimes, no matter what you do, the durn thing will
>'not'
> > go
> >> >> in. Relax for a bit and have someone else try. The angle of the cath
> > will
> >> >> help. When it goes in the hole have it pointed down a bit towards
>the
> > new
> >> >> bladder.
> >> >>
> >&! gt; >> The main thing is to be patient! It "will" work--stay on
>ditropan or
> >> >> whatever you use for bladder relaxation. What kind of cath are you
> > using?
> >> >> The red rubbers are the softest, but because of that it does not
>have
> >> >> enough
> >> >> stiffness to get thru the tight times, but will eventually if you
> >> >> lubricate.
> >> >> I forgot about lubricating--its been so long since I have used it, I
> >> >> forget
> >> >> about it.
> >> >>
> >> >> Basically its one of those things that the more you 'fight', the
>worse
> > it
> >> >> is. Then suddenly it will go in, and you have no idea what you did!
>I
> >> >> will
> >> >> be signing off for the day, but be optimistic, it will work and see
>ya
> >> >> tomorrow! take care,
> >> >>
> >> >> Dan! a and ?
> >> >> [EMAIL PROTECTED]
> >> >> ----- Original Message -----
> >> >> From: "~LittleQuad~"
> >> >>
> >> >> To: "Quad-list post"
> >> >> Sent: Sunday, January 09, 2005 5:52 PM
> >> >> Subject: [QUAD-L] Help....
> >> >>
> >> >>
> >> >>> Hey gang! I've had my surgery and my doctor says it was a success.
> >> >>> I'm
> >> >>> not
> >> >>> so convinced! The hole gets clogged up and fluid build-up. It's
>very
> >> >>> sore
> >> >>> and bleeds when messed with. I can hardly stand to look at it, much
> > less
> >> >>> cath thru it! My mom tried and she couldn't figure it out. So I'm
> > going
> >> >>> to
> >> >>> try it in a little while. Doc says do it every 4 hours. Ugh, h!
>elp! Is
> > it
> >> >>&g! t; supposed to do that??? I'm going to get a pic taken of it and
>send,
> >> >>> hopefully this week.
> >> >>> Thanks guys!!
> >> >>> Amye
> >> >>>
> >> >>
> >> >>
> >> >>
> >> >
> >> >
> >> >
> >>
> >>
> >>
> >
> >
>
>
>
>
>
>
>---------------------------------
>Do you Yahoo!?
>Meet the all-new My Yahoo! – Try it today!
I do the same, Dave. But as soon as I swallow the dryness is back. What is
really irritating is the damage it does to my taste buds. Do you have that
problem?
