abdominal pain with PD catheter

[Cabrilla]

Since having a PD catheter placed 4 months ago I keep getting episodes of lower abdominal pain. The pain is deep, intermittent, and sometimes severe enough that I have gone to the emergency room. But labs and scans find nothing wrong.

I’m not doing dialysis yet, since GFR is sitting at 15. I am on a transplant list. I also had a hysterectomy a few weeks prior to getting the catheter since I needed to make room in my abdomen, I have polycystic kidneys with an enlarged liver.

Has anyone ever heard of a PD catheter causing abdominal pain?

[Beachgirl32]

yes I had my pd catheter Jan 20 at first I thought it had to heal from surgery . I kept having pain lower right abdomen my pd nurse said it will eventually shift . I started dialysis and had the worst drain pain from it again I was told same thing give it time . If I still have the pain the surgeon could reposition it so it wasn’t hitting my abdomen wall so much . Now I just have drain pain they said the dialysis will move it so either you wait until you are on dialysis or see if your surgeon think it should be move . I have polycystic kidney disease and I also gave alot of cyst in my liver sometimes I wonder if the cyst could be pushing against the catheter. I’m also waiting transplant I was hoping to get transplant before dialysis but wasn’t in my cards but I will pray that it can happen for you 🙏🫂

[meggy619 in reply to Beachgirl32]

I had this too, these catheters are all the same length, we of course are different sizes, so the surgeon gauges where to put the incision, if it's too low down, and the tube is inserted too far, it feels like the wall of the abdominal cavity, or other part of you, is being sucked into the end of the tube, I felt the pain in my testicles. The machine senses the blockage and relives the suction, then increases it again, causing hat nipping stabbing pain, they had to give me oral morphine because it was so bad, I ended up folding the tube to stop the suction when it got bad, eventually the tube shifted to a different position, and it only happened occasionally, I was glad when I eventually got rid of it.

[Darlenia]

My hubby never had catheter pain of any sort from the very beginning. It really saddens me to hear of so many having that issue. For some, it does seem to be related to not having a lot of room in the peroneal cavity due to cysts, or the cath bumping up to one, etc. In our case, my hubby's kidney failure was due to diabetes, not cysts, so he had ample room and he never once experienced pain. He only had a slight "pulling sensation" when draining that he could easily ignore. He now has a transplant but still recalls everything clearly. (Interestingly, I do think his cath prevented his GI doc from performing a complete colonoscopy - that doc couldn't move his scope beyond a certain point, lol.) Anyway, I do know that some surgeons are better at placing PD caths than others, our PD nurse sent people to her preferred choice. So, in any event, no matter the surgeon, you can definitely have it repositioned. Also have the PD nurse change the settings to "tidal" if your machines allows that. That has helped some folks too. That system truly wasn't designed to give you pain.

[RonZone]

Cabrilla, have you spoken to our PD catheter surgeon about this pain? Might be good to make an appt with the surgeon and have him/her review and offer insight. I too had pain associated with my PD catheter. In fact, I've had various pain events. The first was an issue with my back that was connected to the pressure of the dialysis fluid that caused me to have to stop manual pd dialysis after a week. Once I got on the cycler, and was doing dialysis lying down at night, that pain was almost eliminated. Next is the drain pain that occurs at the end of a drain, which I hope you are aware of prior to starting manual dialysis. Then I have some pain during fills that is a bit unexplained, but is definitely related to the fill process.

THEN there are other times when I'll just be brushing my teeth, or walking or standing up, or some other very low level activity and I'll get a sharp pain that is unexplained, but yet is in the same area as my drain pain, so it seems to be related to the catheter in some way.

I also have Polycystic kidney disease, and it seems plausible like Beachgirl says, that this pain is related to our cysts. I've not had anyone, my surgeon, my Neph, my GP, nor my PD nurse give any other possible explanation (nor have they looked for one very hard to be honest. It's almost like PD comes with pain-get over it type attitude). Now that being said, I do not think that my pain is on the level of yours if it's causing ER visits. Except for the three times I've had a cyst to burst. That pain was like childbirth it seemed (I'm a dude, so take that reference with a grain of salt). When I reported that pain to my GP, he thought it was a kidney stone, but test disproved that theory, then my Neph, when I saw him a few days later, said "Yep, it happens" and that was all he said. So since then, I've figured out that cyst burst pain isn't something anyone can do a thing about so they don't really have anything to offer other than a pain pill (GP, not Neph).

I SURE wish I could tell you that PKD, CKD, and PD specifically will not be painful, but as you can see from any of my posts and from those of Beachgirl, that would not be the truth. It's not a matter of when, but how much and how often.

Does your PD team having you doing weekly "flushes" of your PD catheter, where you put in like 300-500ml of pd fluid, then drain it immediately back out to keep your catheter clear of fibrin? Just curious since it's been 4 months since your surgery and you've not actually started PD dialysis yet. I had to do that each week while I was waiting to heal from hernia repair surgery last fall between my failed manual PD and before starting on the cycler.