Needing the toilet (No.1’s) whilst dialyzing?

[kristina]

Hello,
I have just had my second session of dialysis of 2.5 hours (my first session was only 70 minutes).
I am obviously a novice of this dialysis-business and at my second session I felt quite happy particularly when I had a coffee and a sandwich, all was going well.
Then after two hours I began to feel the beginning of an urge to visit the toilet, but I thought perhaps I just hold out for the last half hour.
About ten minutes from completion my situation was getting very very desperate and so I asked the nurse could she unhook me and allow me to go to the toilet. 
At first it appeared as though my request fell on deaf ears within the last few minutes I became panic-stricken as to what to do.
Then the nurse began to finish the dialysis process as normal and disconnected and bandaged and taped the lines together.
By this point I was beside myself with grief and thought I would not make it to the toilet at all
and I could not understand why the nurse had kept the line on until the whole process had finished.
When I came back from the toilet it was explained to me that she could not disconnect me because with so much blood outside my body
there was a huge risk to my health in as much as I might probably fall over in the toilet.
Their protocol is to complete the dialysis because this is the life-support system and if a patient has to go to the toilet
their protocol says they must do it in the bed and the nurse will clear it up later ...
So you can picture the scene.
My question is : how do other dialysis-patients who still pass very regular urine deal with this problem whilst on dialysis?
Should I have avoided liquid for some time before dialysis and avoided a coffee at dialysis?
Could the dialysis have stimulated my body e.g. aggravated my bladder ?

Your answers would be most welcome because I got a bigger session on Thursday...

Thanks from Kristina.

[Michael Murphy]

First the good news the fact you have to urinate I too have to go while on my 4 hours and fifteen minute session.  If it is urgent my center will flush back and let you visits the facilities the bad news is if the whole procedure take let's say 15 minutes then you will have 15 minutes added to your session. So in the Last 20 months I just grin and bear it most of the time, twice it was not a option and I got a 15 minute reprieve to go.  While this is a small problem realize the fact your poor kidneys are still creating urine is a very good thing the fluid limits of 32 oz assumes  no output usually get 32 oz over what you put out.  With a large enough output you may not be fluid restricted.  People who don't go tend to have larger fluid gains larger fluid gains more water removed during dialysis more fluid the dreaded cramps, low blood pressure  this is something to avoid.  So restrict drinking before dialysis to reduce the need to go.  If it is impossible speak to the nurse about a scheduled break where they return your blood let the machine keep running and let you make your visit.  I run to the men's room after each session and I realize that means I can drink all the water I want.  I also should say at 134 kilos I am more than a bit over weight. Let's be frank FAT.  As such when I started dialysis my doctor thought it would be a good idea to challenges my weight by setting my dry weight 5 kilos below my then current weight. To complete my misery he also limited me to 40 oz. of fluid.  I became so dehydrated I stopped making urine.  After one session I went to the doctor and my BP was down to 75 over 45.  I also felt like 3 day old road kill.  The doctor was un happy and raised my dry weight to a half kilo below my former weight and lifted my fluid restriction.  I feel better and now I know visiting the rest room frequently is a blessing for a dialysis patient.  So you are not alone not all patients have no output.  My advice is enjoy the freedom that it gives you. Ps I also rarely need to take binders because of this and my lab work is usually perfect.

[kristina]

Thanks for getting back quickly Michael. I appreciate all the points you make.
As difficult as it seems to me at the moment, I shall try to regulate my fluid-intake so as I can get through the dialysis-session. 
I am going to have a chat with the dialysis-unit today and see what they think about my experience last night.
I also realize that there are three dialysis-slots through the day with little timing between
and I do appreciate that the staff may not want too many delays with patients which would cause an overrun into the next session.
Thanks again from Kristina.

[obsidianom]

Thanks for getting back quickly Michael. I appreciate all the points you make.
As difficult as it seems to me at the moment, I shall try to regulate my fluid-intake so as I can get through the dialysis-session. 
I am going to have a chat with the dialysis-unit today and see what they think about my experience last night.
I also realize that there are three dialysis-slots through the day with little timing between
and I do appreciate that the staff may not want too many delays with patients which would cause an overrun into the next session.
Thanks again from Kristina.

Kristina, STAY AWAY FOM COFFEE during or just before dialysis. That is probably what ocurred. Coffee is a potent diuretic. In other words not only does it give you fluids but it strongly stimulates the need to urinate. That is probably why you had to go so badly. Save the coffee for AFTER dialysis. (like a treat).    Use the rest room just before you get on the machine and then limit liquids until after dialysis. Then you can drink freely. That will make your dialysis less stressful.
I use a bedside commode for my wife if she has to go. But that is probably not possible for a clinic. I actually can keep the machine going while she gets on the commode. It worked easily yesterday in fact.
I am glad you are otherwise doing well on dialysis .

[OlManRivah]

I've been on Dialysis for going on 3 1/2 years.  I've never been in their bathrooms.  I don't even know what they look like.

I seldom eat or drink before my session.

[kristina]

Thanks for this good tip obsidiamom and thanks for your thoughts OlManRivah, I shan’t have a coffee prior to or during my dialysis in the future.
The dialysis-unit have assured that the protocol is to flush-back and disconnect and allow the patient to go to the lavatory and on return recommence dialysis.
A bedpan is available but interestingly the use of this is not the principal protocol, whereas flush-back is the principal protocol. 
So no coffee before and during dialysis and flush-back if needed seems to be the answer to my question and I am grateful for the quick response.
Thanks again from Kristina.

[iolaire]

I've not needed to do it yet, but a have to go at the end, but my center has a few patients that they flush back and let go to the bathroom.  Also at one traveling center they told me I should have not held it and just flagged them down to disconnect me temporarily. 

FYI: I drink a ton, and am trying to cut back, but since I'm urinating its fair low priority.  What I have done is try to cut back on the dialysis day so they are pulling of less fluid that I've consumed that day.  That's meant drinking my water with lots of ice so I run out of water faster and drinking espresso on dialysis days rather than coffee (my work has snazzy coffee machines and snacks). One thing I like with the espresso is to add my creamer before I make it, then it froths up a tad so its more cappuccino like even though its just an express shot.  Even with that I have to go before and after each session, but then I do drink a good bit and have always gone to the bathroom frequently, including at night more than four times.  Also I drink under about 100 to 500 ml of water at dialysis and eat a raisins and an apple.

I think the key is if you need to go, bring it up a good bit prior to the end of the session if its close to the end they will just make you wait.

[jeannea]

On dialysis I was still urinating. I would only sip water during dialysis and only eat hard candies. Although I didn't feel like I could actually eat while on the machine. The best thing is to just control your intake so you don't have to go. You'll get more used to this whole thing as time goes on.

[kristina]

Thank you iolaire and jeannea for some more advice,
I think I am now better prepared and more confident to get through the next session.
Thanks again from Kristina.

[Maggie and Jeff]

Maggie started with dializing with the NxStage that was over 8 years ago.

For the first 4 years she made nearly a liter of urine per day.

She often would need to go while on the machine.

We got a portable potty chair and would slow the blood speed down and I would help her move to the potty chair without pulling the lines or stopping the treatment.

Then one holiday weekend she ran a high fever and has not urinated since.

Doing Home Hemo has been a life changing experience but Maggie is doing very well and most people would never even suspect she is on dialysis.

We dialize 6 days a week.

We wish you the best.

Perhaps you could find something to urinate in while in the chair so you wont have to hold it or sit in the wet.

[kristina]

Thank you Maggie and Jeff for kindly sharing your experiences.
I have decided that in the future I shall do my utmost best to prepare myself better for dialysis-days
and I shall cut down my liquid-intake beforehand, so that I won't get into that situation that easily again.
Thanks again from Kristina.

[Sugarlump]

When I was still passing urine or unwell, I would request to be unhooked and allowed to go to the toilet. They don't like it because it's extra work and I have never fallen over on the toilet that's for sure!!! It's not "dangerous" and there is only a maximum of 300ml in the machine at any one time...that's pretty small. As long as your blood pressure is normal...go.
Don't let them make you wait til the end especially when you start to do longer times!!! 
How's it going?
If you want to go, you have the right to go...

[Simon Dog]

Clinics generally have privacy curtails available for each chair, so going in a bottle would seem to be a practical solution.

The NxStage protocol is a bit different - if you want a temporary disconnect, you flush the blood back with saline first.   This of course means coming off heaving unless you disconnect early enough in treatment to compensate with a UF adjustment.

[Michael Murphy]

I should add for the record the staff at the clinic I use has never given me a problem when I have asked for a reprieve to visit the rest room.  I hold it if it's not too bad because I donot want to lengthen my time on the machine.  I also make a point of going to the rest room prior to the start of my sentence.

[noahvale]

*

[Michael Murphy]

I know the time off is not added to machine time in reality but it does delay my planned escape from the clinic.  Worse is the effect it has on the patient scheduled to follow me in the position I am using.  If I delay them for 15 to  20 minutes that then effects the next three patients after me.  It also creates more work for the nurse or tech that is accomedating me.  All told I try to avoid getting off to take care of Buisness .  The two times I have asked for relief I waited till it was evident I was going one way or another.  The other problem is I currently live in New Jersey and if I get delayed to much I end up in lunch traffic and I hate driving in it after dialysis.  When I first started dialysis I had two minor fender benders and had my insurance canceled,  now I am much more cautious after dialysis in the spring I will move per entry to the Adirondacks in  upstate New York.  Then while I will have to go 30 miles to dialysis. There is so much less traffic it  will be a easier drive,

[kristina]

Thank you all for kindly sharing your experiences, it is very much appreciated.
Yesterday I had my third dialysis-session (three hours) and this time I was better prepared:
I had deliberately restricted my fluid-intake from after breakfast and also went to the restroom
just before my dialysis-session in the evening and that enabled me to sit through my whole dialysis-session ...
It seems everything has to be prepared and planned very well beforehand
to avoid any problems and surprises during each dialysis-session...
Thank you very much again from Kristina.

[obsidianom]

Thank you all for kindly sharing your experiences, it is very much appreciated.
Yesterday I had my third dialysis-session (three hours) and this time I was better prepared:
I had deliberately restricted my fluid-intake from after breakfast and also went to the restroom
just before my dialysis-session in the evening and that enabled me to sit through my whole dialysis-session ...
It seems everything has to be prepared and planned very well beforehand
to avoid any problems and surprises during each dialysis-session...
Thank you very much again from Kristina.

Are you feeling any better then before dialysis now? It may be too soon , but I am interested in how you are feeling .

[Sugarlump]

Clinics generally have privacy curtails available for each chair, so going in a bottle would seem to be a practical solution.

The NxStage protocol is a bit different - if you want a temporary disconnect, you flush the blood back with saline first.   This of course means coming off heaving unless you disconnect early enough in treatment to compensate with a UF adjustment.

Our unit has NO privacy curtains just one small moveable screen about 3 foot 6 inches high!!!! and peeing into a bottle might be okay for a bloke but what about us girls 

[kristina]

Thanks again obsidianom and Sugarlump.
... My neighbour asked me today how I am doing on dialysis and I answered her that it is not very recommendable but without it I would be dead
and because of that I appreciate its existence very much ...
Fortunately our unit does have privacy curtains, but I think it is better for me to train myself and cut my liquid-input down on dialysis-days prior to being “put on” the machine.
Hopefully it is only a question of getting used to the new routine.
Thanks again from Kristina.

[noahvale]

*

[kristina]

I agree with you noahvale.
Because of unforeseen delays, I did have to wait 90 minutes yesterday, but it did not really matter,
because my dialysis-session was very late in the evening anyway and all I had to do afterwards was to go home and sleep.
I very much prefer late evening dialysis-sessions, because that helps me to "sleep-off" the dialysis-chemicals.
I have noticed that I must have been extremely poorly before starting with dialysis
because through my lack of energy I could not do anything anymore before starting with dialysis.
Having started with dialysis now, I feel I have a tiny little bit more energy again.
Hopefully it continues like that...
Thanks again from Kristina.

[Sugarlump]

That's a good sign 

[obsidianom]

I agree with you noahvale.
Because of unforeseen delays, I did have to wait 90 minutes yesterday, but it did not really matter,
because my dialysis-session was very late in the evening anyway and all I had to do afterwards was to go home and sleep.
I very much prefer late evening dialysis-sessions, because that helps me to "sleep-off" the dialysis-chemicals.
I have noticed that I must have been extremely poorly before starting with dialysis
because through my lack of energy I could not do anything anymore before starting with dialysis.
Having started with dialysis now, I feel I have a tiny little bit more energy again.
Hopefully it continues like that...
Thanks again from Kristina.

It gets better over time. By the way there are really no "dialysis chemicals' . Heperin is about the only medicine added and that is gone in about 4 hours anyway. By the end of dialysis the heparin is gone. Otherwise there are no chemicals added . Dialysate is simply a fluid that matches your own body chemistry fairly closely . It never goes into your blood stream anyway. Dialysis basically removes chemicals but really doesn't add any.

[kristina]

Thank you obsidianom and Sugarlump for your kind encouragement.
I also feel that things are getting better and my main feeling at the moment is
total relieve that I finally have made it to be able and take-on dialysis.
I shall keep my strict vegetarian diet because I think it has assisted me
and my body to adjust to dialysis without noticeable problems.
Thanks again from Kristina.