Worst first week of PD

[Dkrotzer]

I started PD dialysis this last Monday. I started out doing the manual exchanges and last night I used the cycler. Since the first time I got it flushed I have had severe drain pain. It is so bad that I curl into a ball and cry.  I went and seen the surgeon who put it in and he said he will need to go in and check to see whats going on. Well when I did my last drain it was pink. Not just a light pink either. Now I am having a cramping pain even just sitting here. I have talked to my nurse and she didn't seem worried at all. I do not have a fever. My appetite is good. Has anyone ever had issues like this? I do not think I can keep doing PD with this pain. I do have a matured fistula and I have a scheduled surgery date for a transplant in 3 months. Any advice is much appreciated 

    

[MaryD]

I do CAPD so I don't have too much knowledge in the APD field.  However, I have read here that if you can cut down on your draining so that you're not completely empty at the end of each drain, the drain pain problem is considerable lessened.

I'm sure that someone who has actually had the problem will be able to give you more details.

Hope you get sorted soon     

[JenOfCA]

I have been on PD for one year now, I had horrible drain pain when I first started, it felt like the machine was sucking my insides out! The solution to my problem was to switch my PD program on the machine to Tidal, this way a little solution was left inside for each exchange and the machine wasn't trying to suck me dry, I still had drain pain at the final drain but at least it wasn't every time. Now that time has gone by I have no pain at all, maybe a little pinch now and then, be patient and give it some time, PD has been great, I would be so sad if I had to go back to Hemo! Good luck to you.

[Joe]

It sounds to me like you are pulling too much fluid off. That would cause you to cramp due to dehydration. The thing that concerns me is the coloring in your drain bags, you didn't say, here, when you had your catheter placed. Was it recently enough that you could possibly still be bleeding some? As for the drain pain, I've had that from time to time. The best thing I've found to help that is when it happens, stand up, pinch off your line to stop the flow and shake, wiggle jump, move a lot. My PD team calls it the PD shuffle. What you are trying to do is break the suction connection your catheter has made with the side of your peritoneum. That's what is causing the drain pain.
Good luck and hope this passes.

[Dkrotzer]

Thank you everyone! 

I got the catheter placed almost 3 weeks ago. I think I am pulling to much off as well. I can control it more with the manual exchanges. So I put in 1500ml and when I drain it really starts to get painful at 1400ml and it keeps staying painful. On the machine the first and last drains were the worst. It would just keep trying to take more off and it would not stop. The machine is on tidal so two of the drains where not that bad. Thank goodness 

So can you control the firs and last drains?

Thanks again

 

[amanda100wilson]

Why jo go back to tha manual exchanges?  APD is not for everyone. go to your nurse and don't take indifference.  Obviously something needs to be done.  I know how painful that sucking feeling can be.

[JenOfCA]

Yep that was exactly what was happening to me, there is no way to control the first or last drain that I know of but if you are like me things will adjust and soon you will have no pain. I have also tried the "PD Shuffle" changing positions and jumping up and down during pain, didn't really work for me, just time and patience, hang in there!!

[papacat]

Hello DKrotzor, All of these comments are related to the Baxter CCPD system.

I had severe drain pain intermittently until I switched to 80% Tidal. I had started with 90% Tidal, but noticed the pain came primarily at the end of the first drain cycle. I changed to 85% Tidal and it was better but still there. I then went to 80% Tidal and then the drain pain was almost gone. When I also adjusted the Total UF to 300 ml. the first cycle drain pain disappeared completely.

The Total UF was set to 500 ml originally. That meant than the 500 ml was equally divided and added to each drain cycle, increasing the amount of draining required. The idea is to spread the expected UF over all the cycles instead of doing it all at one time. I reduced the Total UF to 300 ml. This also helped reduce the required ml to be drained during each cycle

I had Target UF set to 0 ml which helped eliminate the last drain cycle pain. The Target UF will keep the last cycle draining until the Target UF is obtained. I do a manual drain at the end of therapy once I get out of bed. You can then manually end the manual drain cycle before it gets painful.

Another issue I had was on days where I didn't have any bowel movement, my drain pain would be worse. I had to start taking more laxative each day to keep everything flowing.

For my first 2 months I was having a lot of drain pain. Some nights I was doubled over with severe pain. Now I can't believe it, but I can sleep through most nights and not even know I am connected.

What I did was observe the ml drained when the pain started. Then I adjusted the Tidal program so all but the last drain cycle was below the pain threshold. I was getting pain when the drain at 1680 ml.

Example: Fill Volume: 2000 ml, Tidal Vol: 80%, Total UF: 300 ml, Full Drains Every: 5, Target UF: 0 ml (Target UF is in Adjustment Menu)
That means there will be 5 Cycles in the Therapy
Cycle 1 Fills with 2000 ml, Drains 1660 ml  (2000 ml X 80% = 1600ml)  (300 ml / 5 = 60 ml)  (1600 ml + 60 ml = 1660 ml)
Cycle 2 Fills with 1600 ml, Drains 1660 ml 
Cycle 3 Fills with 1600 ml, Drains 1660 ml 
Cycle 4 Fills with 1600 ml, Drains 1660 ml 
Cycle 5 Fills with 1600 ml, Drains 2000 ml  (This normally leaves about 200 to 500 ml)
Then when I do a manual drain at the end, I still will drain out the remaining solution left after cycle 5, until I start getting some drain pain

papacat

[Whamo]

PD SHUFFLE

Move it to the left
Shake it to the right
Move it front and back
You're in pain tonight

It's the PD Shuffle
We do it every night
It hurts when you drain
Until the morning light

[Joe]

  whamo, that is too funny!

[nholleger]

Good Evening,

Just wanted to touch base.  I have been doing the manual PD and I have had bags that were down right bloody.  My doctor said it is because I have polycystic kidney disease and if you have cysts rupture the dialysis fluid will absorb the blood in the body......don't know if that is your cause but wanted to put it out there.  I also have pain on drain when it gets near the end.  The PD nurse just leaves some in.  I have not started the cycler yet though.

[Pagan8858]

Thank you for sharing your experience. First week of at home PD for me. I too have been experiencing severe drain pain towards the end of each drain. Not to get too graphic, but it feels like someone is pushing a lead pipe through my urethra. Being a guy, that's none too pleasant an experience. I've been trying the PD shuffle and it doesn't help. From the posts I've read on this thread, it seems to be a common problem.  At least I can take comfort in knowing I am not some singular freak. It helps to know I am experiencing what others are.  Don't get me wrong, it still SUCKS. But at least I know I'm not going to explode in the process.

Thanks again to you all.

[Quickfeet]

Pagan8858 don't let it drain you dry. The little holes suck your sensitive lining causes damage, that's what causes the pain. When I first started the nurses were obsessed with getting every last drop out. This caused excruciating pain in my testicles and penis, in addition to abdominal pain. I did this for several months before I realized they were wrong. It got so bad that some times I banged my head against the wall to from the pain. At some point I learned about drain pain probably here on the forums and I changed how I did things. I now immediately stop draining when it becomes uncomfortable and then I start to fill. At that point though it took I while for everything to heal up, so the new solution going in still burned. After every thing got healed my life was so much better.

If you are on the cycler, get "tidal" that automatically leaves a little in you. On the first and last drain you will have to choose to bypass (stop) the drain manually, but you won't get woke up in the middle of the night in pain at least.

[amanda100wilson]

Do you still menstruate (/sorry for the intrusive question?) because in women this can be a common cause of red bags.  Other common cause is tugging on the catheter, lifting something too heavy.  It generally resolves pretty quickly, i.e. within a day or two, but if it doesn't or gets work, definately call your nurse.