after 6 months i still have drain pain every time i hook up to CAPD machine

[msf21]

I have been on PD since July (its now February)  and I still have severe drain pain during the Initial drain phase and at the end of the final drain phase. I have tidal turned on, i dance, giggle, lay on my side, curse, and just about everything else that has been suggested. I went to the surgeon that put it in and he had no answers. He tried moving it with a wire, but nothing changed. I really hate doing dialysis because of this problem. I am checking to see if I am overlooking something, or any solutions. I have the same problem with manuals, but the pain isn't as bad. I tried to "get used to it" but it hurts so much that most of the time I can't ignore it.

[pylesch]

I have this exact same problem. It actually makes me cry the pain is so bad. I was on Baxter at first but that cycler doesn't allow an initial drain bypass and I'm empty during the day. The drain pain from the initial drain alone had me in tears for ten minutes every night. I decided to switch to fresenius which helped a little because the drain can be bypassed if it starts to hurt. I'm unhappy to say that it's been over a year and I still have drain pain every final drain. I try to time it so that I stop it before I'm empty and that alleviates the drain pain but it also causes some issues with my UF because sometimes I stop it too early and have too much fluid in. I have tried all the solutions they suggested including dancing around to move the catheter, getting on all fours, laying on my side, changing the height of the cycler, among other things. Nothing they suggested helps and I imagine seeing the surgeon wouldn't make a difference either. I hope your problem goes away and the pain stops. But in the case that it doesn't just know you aren't alone. And if I find a solution that actually makes a difference I will be happy to share it.

[JLM]

Mayhaps your catheter is in too long inside of you and is laying against an organ causing the problem.  And you cannot move it with your gyrations.  Have they x-rayed it?

[msf21]

I am glad I am not the only one. I went back on hemo in october but I am trying to go back to PD in January. Hopefully the next time around this won't be a problem. Can I get the Fresenius machine if I am under the care of Davita? I know they are competitors but if the machine might work better than I hope I can at least try it. If it comes to it I will just do manuals since you control it better.  @ pylesch Just curious, did you ever have any hernias or abdominal surgeries in the past? When I was an infant I had a few hernias. Its never been an issue before dialysis but perhaps the cause of this issue (just a theory, never ran it buy a doctor) I did have it x-rayed when they moved it around with a wire but they couldn't see a problem with anything. I never thought that the length of the catheter being a issue, but I will bring it up with the surgeon when i have my surgery.

[pylesch]

I am at a Davita center and they actually recommended the switch to Fresenius so I would say just ask your nurses about it. I didn't have any hernias or abdominal surgeries pre-dialysis, my catheter placement was my first abdominal surgery. I had drain pain literally from day one before the hernia and I developed the hernia really close to my exit site while my drain pain is in the bottom of my pelvis. I have been reading as much as I can find on it and my only thoughts as to the chronic drain pain are maybe it has something to do with the fact that I still frequently urinate or maybe it has something to do with the muscles in that area. I don't know if a lot of people have this issue but I have a terrible problem with holding my bladder because kidney failure apparently causes incontinence in some people. It's not like I pee my pants all the time but the sphincter muscle doesn't always hold up when I laugh or cough (I haven't had kids so it's not that) and that area is right where I feel my drain pain. I imagine it has to have something to do with me because it isn't the catheter I've had it x-rayed and cat scanned and I know it's not getting stuck to something because no matter how much I move around I still feel the drain pain and it's always in the same spot. I also associate it with something other than sucking on something inside because I have fill pain in the exact same place if I am empty when I start filling. My only relief came in the form of a fancy Fresenius cycler, it doesn't get rid of the pain it just gives me an escape option when the Baxter forced me to drain for at least two minutes when I was starting already empty. Sorry I can't be of more help. Maybe if we compare a little bit more we might find something in common that could be the cause. Davita doesn't like to put people on Fresenius so if your nurses tell you no just don't take no for an answer because it is allowed on Davita the clinic just has to pay more so they try to stay away from it. Keep your head up you are not suffering alone

[Charlie B53]

I must be very lucky in that I very rarely have any drain pain.  Although those few times I did it was quite intense, as if the hose had sucked up hard against the abdominal floor/wall like a vacuum, trying to suck the flesh through the hose.

Once switched to the fill, the hose must have 'moved' as the pain stopped.  I did notice a few days later I would have a lot of fiberin 'string' and chunks in the drain bags.  I'm thinking it forms a protective covering over the abraded area to help protect it during healing, sloughs off when no longer needed.

You may need to talk further with your surgeon that placed the cath, ask if it possible that your cath have a sharper edge than normal such that 'ribbing' anywhere creates some abrasion.

Only problem I see with that is Dr may want to take you into surgery and LOOK.  But if it fixes it, then maybe it is worth it.

Good Luck,

Charlie B

[msf21]

I am at a Davita center and they actually recommended the switch to Fresenius so I would say just ask your nurses about it. I didn't have any hernias or abdominal surgeries pre-dialysis, my catheter placement was my first abdominal surgery. I had drain pain literally from day one before the hernia and I developed the hernia really close to my exit site while my drain pain is in the bottom of my pelvis. I have been reading as much as I can find on it and my only thoughts as to the chronic drain pain are maybe it has something to do with the fact that I still frequently urinate or maybe it has something to do with the muscles in that area. I don't know if a lot of people have this issue but I have a terrible problem with holding my bladder because kidney failure apparently causes incontinence in some people. It's not like I pee my pants all the time but the sphincter muscle doesn't always hold up when I laugh or cough (I haven't had kids so it's not that) and that area is right where I feel my drain pain. I imagine it has to have something to do with me because it isn't the catheter I've had it x-rayed and cat scanned and I know it's not getting stuck to something because no matter how much I move around I still feel the drain pain and it's always in the same spot. I also associate it with something other than sucking on something inside because I have fill pain in the exact same place if I am empty when I start filling. My only relief came in the form of a fancy Fresenius cycler, it doesn't get rid of the pain it just gives me an escape option when the Baxter forced me to drain for at least two minutes when I was starting already empty. Sorry I can't be of more help. Maybe if we compare a little bit more we might find something in common that could be the cause. Davita doesn't like to put people on Fresenius so if your nurses tell you no just don't take no for an answer because it is allowed on Davita the clinic just has to pay more so they try to stay away from it. Keep your head up you are not suffering alone

The location of your pain is the same as mine, Groin/ Sphincter Muscle area. It feels like I am being stabbed in the groin with a knife and it last approx 2-4 minutes. Its pretty unpleasant. Are your kidneys formed correctly?  Mine are in a horseshoe shape, maybe it has something to due with it because they sit further back than they are supposed to. Mine are practically in my lower back. Despite all the problems, I can't wait to get back to doing PD. Hemo is not going that well either. Currently I am using a chest catheter and I have to get it changed every 3-4 weeks because of all the fibrin growing at the end of the catheter. They have tried to unclog it with that Cathflow stuff, but it doesn't work. My fistula didn't form right either and i have to get it fixed. It is off to the side, too deep and directly over an artery. Its like my body is resisting all types of dialysis despite the need for it. I wish I could just say p*ck it and everything would somehow start working again so I wouldn't need dialysis anymore. On a positive note, I think I am close to getting a transplant soon due to the changes in the allocation program.

[pylesch]

Sorry for the sloe reply and I hope everyone had a Merry Christmas and Happy Holidays. As for the drain pain....My kidneys are shaped correctly and they are in the correct location although I do experience a lot of pain in them. Our pain is identical although mine doesn't last as long but I have worked tirelessly over my last year on dialysis to lessen my pain as when I started it would last up to five minutes. I have altered little things such as having a larger first fill (2000ml) and smaller cycle fills (1500ml) with a tidal drain (1500ml), laying flat for fill and flat or on my side for drains, never standing unless I'm on dwell, and small back and forth movements when draining. I monitored and recorded my UF in relation to the strength of the dialysate in order to have an idea when I was close to the end of my final drain and to have my clamp in my hand to shut immediately. I have noticed the faster I close it off the less I experience the pain which has cut it down to less than a minute of pain. There are also days when I feel a slight pre-pinch before the drain pain stab and i close off the tube at that time as it leaves very little dialysate and prevents the drain pain. I can say that with my changes I experience less drain pain but sadly it simply does not go away all together. I'd advise trying some of these things or talking to your nurses about changing your cycle fills and drains. Keep trying with the drain pain and hopefully it helps. Also congratulations on the possibility of a transplant soon I will say a little prayer for you

[jcanavera]

I have this exact same problem. It actually makes me cry the pain is so bad. I was on Baxter at first but that cycler doesn't allow an initial drain bypass and I'm empty during the day. T

My wife's new Baxter cycler will allow you to do a bypass.  You start the initial drain, hit stop and then scroll down to bypass.  Her machine has the program card in it.  We noticed in her last hospital stay that the older Baxter they used would not allow us to bypass the initial drain when you hit stop.  The menu didn't show bypass as a option.  I was able to go to the make modifications menu which allowed me to modify   a parameter which dictates a minimum initial UF.  I was able to get that down to the amount that we had drained so far, and then when hitting go the cycler ended the drain cycle and went to fill.  We typically do not bypass the initial drain.  The one time we did it at home was when she had an outpatient procedure and our PD nurse advised us to not fill her with extraneal that day.  The hospital situation was the fact that the PD folks made an error in their initial programming of the machine which was found as she was initially draining.  They had to reprogram and start her over but we couldn't reach minimum drain amount since she had partially drained earlier.  That's when I discover their machine would not allow you to bypass the initial drain.

Jack