FILL pain!?

[jadey]

I've been having a lot of pain during my drains AND fills lately. The pain is like a stabbing pain on my upper abdomen. WHy?!! The pain stops when the fill is finished. I have a feeling that my catheter might be out of place...

This is getting depressing

[Joe]

I haven't experienced fill pain, at least not yet. I do experience pressure when I'm filling, kind of like needing to have a bowel movement (sorry if that's TMI  ) It typically goes away when I'm done filling.
Good luck!

[jeannea]

I think the only times I've had fill pain is when I get an air bubble. Does it happen with every fill or just the first? Or are you on manuals? If manuals, you may need to prime better. If it's every fill on the cycler, definitely talk to your nurse.

[jshabanian]

I almost always have fill and drain pain.  The drain pain usually comes on suddenly and is a sharp stabbing pain in my crotch area near the urethra. (TMI?)  I quickly shut the  flow off and wait a minute or so and try again.  It is typically toward the end of the drain.  The fill pain is more like cramping in the lower abdomen.  Like early labor or bad menstrual cramps.  I try laying down on my side or rocking back and forth, going on all fours and putting my bottom up in the air.  (this is very attractive).  It lasts sometimes for the whole fill.

On the cycler we switched to tidal so it drains to only 85% for drains 2 and 3. This definitely helps with the pain.  I also add lidocaine to my bags both manual and cycler.  That seems to be helping too sometimes.

I am meeting with the surgeon again to see why this keeps happening.  I dread exchanges because of the pain.

I hope you find some resolution to your problem
 

[highway61]

Hey Jadey, are you making sure that your bags are warmed before filling? Was you that mentioned a while back that filled with cold bags? Whenever I have filled with bags either too cold or too warm I have had some discomfort and even pain if it was too cold or too hot.

[jadey]

Thanks everyone for all the replies.

I will probably contact my nurse tomorrow to see if she has any idea.

It's definitely not air bubbles. I do both manuals and cycler.. sometimes when I think I won't be able to fulfill my 9 hours overnight, I do 1 or 2 manuals in the day.

highway61 when I do manuals I usually use "cold" bags.. that is room temperature. The temperature doesn't bother me I don't think.

Has anyone here experienced having their catheter dislocated in the peritoneum? If so, how does this get fixed?

[Willis]

when I do manuals I usually use "cold" bags.. that is room temperature. The temperature doesn't bother me I don't think.

If possible, you can use your cycler to heat the bags. Even if you are going to use them later in the day (assuming they are wrapped or something), they should stay warmer than room temp.

 

[Joe]

jadey, I'm not sure what you mean by having your catheter dislocated in your peritoneum. Other than the collar that keeps it from pulling out, it's free floating in there. It just kind of finds it's own equilibrium as you move around during the day. That's the reason for having drain pain, at least as it was explained to me; the catheter floats over to one of the peritoneum walls and suction kind of holds it there. That's why I pinch off the line to stop the drawing of fluid through it, and thus the suction, and do the PD shuffle to break it loose.

[jadey]

jadey, I'm not sure what you mean by having your catheter dislocated in your peritoneum. Other than the collar that keeps it from pulling out, it's free floating in there. It just kind of finds it's own equilibrium as you move around during the day. That's the reason for having drain pain, at least as it was explained to me; the catheter floats over to one of the peritoneum walls and suction kind of holds it there. That's why I pinch off the line to stop the drawing of fluid through it, and thus the suction, and do the PD shuffle to break it loose.

The nurse told me the catheter can be flipped over and not be in a very good position sometimes. I have a feeling that mine is flipped and leaning onto my side upper abdomen.

What's weird is that it only hurts on initial fill..

[jadey]

Alright so I called my nurse.

She suspects that my catheter is dislodged so it is currently in the wrong position. To fix, I need to go on laxatives to promote peristalsis in my intestines.. hopefully that will move it back into place.

I'm not looking forward to tonight... I have a special function to attend tomorrow too!

[billybags]

Wow, I don't envy you that.

[Joe]

Alright so I called my nurse.

She suspects that my catheter is dislodged so it is currently in the wrong position. To fix, I need to go on laxatives to promote peristalsis in my intestines.. hopefully that will move it back into place.

I'm not looking forward to tonight... I have a special function to attend tomorrow too!

I think that's their stock answer for just about anything weird with PD, you're constipated, take laxatives. They certainly want us moving  Good luck with your treatment, hope all 'goes' well and it gets you back where you need to be.

[tbarrett2533]

I have this problem ALL the time... some tips:

shut off the flow and wait a few minutes
stand up
slow the flow down a lil bit

and yes my cath seems to migrate over to the one side every now and again and to fix it (when all full) I get on all fours and rock back and forth and that usually fixes the problem for a short time (usually a few weeks) then its scootes back over there and I have to do it all over again!!

It appears that every few weeks or so I have HUGE issues with fills and drains being way to painful so every now and again I will go empty aka "dry" for a few hours (I do CAPD) and give my membrane a nice little break and that really seems to help me alot.

Good luck and like with anything you will figure out what works and what doesnt over time.... I am slowly becoming a CAPD Professional (Been on CAPD now for 7 months)  (and I still LOVE IT!!!!!!) 

[jadey]

I have this problem ALL the time... some tips:

shut off the flow and wait a few minutes
stand up
slow the flow down a lil bit

and yes my cath seems to migrate over to the one side every now and again and to fix it (when all full) I get on all fours and rock back and forth and that usually fixes the problem for a short time (usually a few weeks) then its scootes back over there and I have to do it all over again!!

It appears that every few weeks or so I have HUGE issues with fills and drains being way to painful so every now and again I will go empty aka "dry" for a few hours (I do CAPD) and give my membrane a nice little break and that really seems to help me alot.

Good luck and like with anything you will figure out what works and what doesnt over time.... I am slowly becoming a CAPD Professional (Been on CAPD now for 7 months)  (and I still LOVE IT!!!!!!) 

I will definitely try out this method tonight! I took the laxatives the other day and it honestly didn't do much for me. I still have fill pain.. just that the pain was moved about 2 inches to a different location. It's hard finding time to take laxatives because I am rarely at home!!

question.. how long to do rock for? 

[jadey]

tbarrette i have another question for you...

I am going on a trip in a few weeks and I am planning to do CAPD because I really don't want to drag the cycler with me and have the burden of packing SO much more stuff.

I use 1500ml bags for CAPD. When travelling, did you just carry them with you in a backpack or what? ps. if you are going to say that you keep them in the car.... that's gonna suck for me because I wouldn't have a car. I would be walking everywhere during my trip.

How did you find places to do exchanges? Where can you find a good place to hang the bag??

ANY tips or suggestions are welcomed!!

thanks

[jshabanian]

Are you going to stay in one place at night?  If you won't have a car or one destination I don't know how you would carry all the pd bags with you.  They are heavy!  How long will you be gone?

How are you getting to where you are going?  Flying?  Driving?  It's not only the pd bags but also all the other supplies you need to bring that you need to think about.  You should also bring your antibiotics just in case you get an infection or have a break through incident.

there is so much to consider when traveling.  When I go to my in-laws house I have my supplies shipped there and they are waiting for me when I get there.  When we travel by car we carry them in the car.  I am planning a cruise in the next year or so and I will have the supplies sent to the ship.  They only send the solution so I have to bring the rest of the things I need with me.  I usually send them ahead of time by UPS or US mail so I don't have to bother with them on the plane and pay to have them checked.

[jadey]

I'll be staying at my cousins place for 2 days and then at a hotel for 2 days. The bags will be at my cousins and also at the hotel. There is actually less stuff to bring if I decide to do CAPD.. All I need are caps, clamps, hand sanitizer, exit site care stuff and my emergency kit which comes in a small ziplock.

if I brought the cycler.. that would be a different story... I would need drain lines, and cassettes on top of everything else mentioned above.

I'm planning to do 1 exchange in the morning when I wake up.. carry 2 bags with me if I am out all day, when I go back in the night or evening I will do 2 more exchanges. Carrying 3L around for a few hours shouldn't be too bad..

[tbarrett2533]

I take my bags EVERYWHERE, I mean EVERYWHERE!!! I do CAPD and I do  not let it stop me from going anywhere or doing anything and neither should you!!

I had my boyfreind make me a hook from a coat hanger that I hang from any door that I can find so that when I am out I use that hanger as my poll which seems to work just fine. 

I have a bag that I keep stocked full of caps, clamps, hand sanitizer and everything else that I would need so that in the event that I am in a hurry and just want to hit the road real quick I just grab that bag and grab my solution and out the door I go.

I do have a car so I do store and keep my bags of solution in my car, however I dont see why you could not just use a heavy duty back back!!!!  thats what I would do it I was you!!!

whatever you do please and I mean please do not let PD or kidney failure stop you from doing or going anywhere!!! where there is a will there is a way!!!

and just like you did, if you are unsure of how to do something or what to do then just use us here for solutions.....that is what we are here for!!!!

Good luck and any other questions you have that I can answer please let me know either here or you can message me!!!   

[cath-hater]

Thanks everyone for all the replies.

I will probably contact my nurse tomorrow to see if she has any idea.

It's definitely not air bubbles. I do both manuals and cycler.. sometimes when I think I won't be able to fulfill my 9 hours overnight, I do 1 or 2 manuals in the day.

highway61 when I do manuals I usually use "cold" bags.. that is room temperature. The temperature doesn't bother me I don't think.

Has anyone here experienced having their catheter dislocated in the peritoneum? If so, how does this get fixed?


When I first stared pd, I had problems draining.  They found out that my catheter was out of position.  So I had to go into hospital.  They lay you down. Unscrew your exchange set.  Use this long flexible arm and poke through your catheter. While looking under the x-ray, they reposition the catheter. Feels kinda funny.  You can kinda feel the catheter moving inside you.  Since then, I have had no problems draining. That was 9 years ago.

[tbarrett2533]

I have this problem ALL the time... some tips:

shut off the flow and wait a few minutes
stand up
slow the flow down a lil bit

and yes my cath seems to migrate over to the one side every now and again and to fix it (when all full) I get on all fours and rock back and forth and that usually fixes the problem for a short time (usually a few weeks) then its scootes back over there and I have to do it all over again!!

It appears that every few weeks or so I have HUGE issues with fills and drains being way to painful so every now and again I will go empty aka "dry" for a few hours (I do CAPD) and give my membrane a nice little break and that really seems to help me alot.

Good luck and like with anything you will figure out what works and what doesnt over time.... I am slowly becoming a CAPD Professional (Been on CAPD now for 7 months)  (and I still LOVE IT!!!!!!) 

I will definitely try out this method tonight! I took the laxatives the other day and it honestly didn't do much for me. I still have fill pain.. just that the pain was moved about 2 inches to a different location. It's hard finding time to take laxatives because I am rarely at home!!

question.. how long to do rock for? 

Sorry I just noticed this was a question for me to answer........
I will "rock" for just a few minutes then rest, then do it again for a few minutes, and repeat until I can get the pain and slow fills to stop. 
Use your own judgement 
Good luck!!!

[Joe]

Jadey, how is it going? Did the pain ease up?

[jadey]

Yes the laxatives eventually ended up working. I think my catheter is back into the right place now. Thanks for asking! 

[highway61]

YAY Jadey! Glad to hear that things are getting better.

[Joe]

Glad to hear it!