New PD patient, LOTS of pain, please HELP!


#1

So I’m a new PD patient, 31 years old and I started a couple of weeks ago and I’m having quite a bit of pain. I have no pain at all at the exit site, and my nurse keeps telling me that everything looks good, but I have fairly constant cramping like sharp pain, not dissimilar to really bad menstration cramping in my lower abdomen radiating through to my backside. It’s always there, when I’m not dialysing it’s kind of just annoying but it’s really a lot worse on draining, so much so that it often brings me to tears (and I’m not one to cry infront of other people so this has made some awkward clinic days for me.) I have pain on draining with CAPD, but can clamp it off before it gets too bad - unfortunately with my job CAPD isn’t really a long term option for me. I have a Baxter cycler and I have noticed less pain with a tidal, but the hardest part for me is that I can’t skip/bypass/or tidal the initial drain, and that’s the one that tends to be the most painful. So much so that it’s actually made me vomit a few times. Do you know if there is a way to set that to a tidal, that maybe my nurse just doesn’t know about? The nurses think the pain might go away with time, but they’re worried that it may not as it’s been 2 weeks of dialysis and 4 weeks with the catheter and it hasn’t even gotten a little better. They have been counseling me on constipation but I feel like they have me on so many stool softeners/laxatives that I’m starting to be just constantly crampy from those which is making the pain worse too. I’m having 1-2 bowel movements a day, sometimes more so I really don’t think that can be the problem. Plus the pain is exactly the same when I wasn’t taking them to now when I am. I’m just at my wits end, it’s so painful and the idea of signing up for a daily treatment that makes me cry and puke makes me want to, well, cry and puke.
Any advice? Please help!
Also, not sure if it matters or not but I have an IUD and I do not menstruate anymore because of it? So I know the pain isn’t actually menstrual.


#2

Use a cyckler. The cycler uses a pump and drains slower and no pain. The cycler is used at night while your asleep. Ask your center to move you the cycler.


#3

From a 2015 post by Dori Schatell for Judith Bernardini:
"Drain pain is caused when the catheter no longer floats in abdominal cavity, and then pushes against organs, nerves, bowel, etc. I presume you do not have pain when you are full. When you are on CAPD, you can manually slow the drain of fluid and stop it altogether when pain begins. What you need to do is determine how much fluid remains in your abdomen when the pain begins. And at that point you should stop draining. You will know how much you put in for that exchange and how much you generally drain. And how far you are from a complete drain. On the cycler, you can program the machine to stop draining at a certain point and begin filling again. Since you are new to PD, you probably have a lot of residual renal function (that is, you still pee a fair amount), so having full fills and drains are not as important as might be for someone who relies totally on dialysis for their clearance of fluids and solutes (creatinine, urea, phosphorus, etc). Your PD nurse can help you determine how much PD you need. It is possible you need an xray of your abdomen to determine where the tip of the catheter lies. And you should consider replacing the catheter, getting a shorter catheter which should solve the problem. Waiting for a kidney transplant can be quite a long wait so try to get your PD nurse and nephrologist to make life better now. Best of luck.”

Dori added. “I would add that some folks have had success with raising or lowering the cycler relative to their heads–often just by a few inches, but sometimes even by as much as a foot.”


#4

Thanks everyone for your responses! I convinced my nurse to let me get an X-ray done and it turns out my catheter is all tangled up around my internal organs. The doctor said she’s never seen anything like it before. I have a spiral catheter and it’s somehow unwound it self and is in a completely different shape. I go in to have it surgically adjusted tomorrow.
Just a word to everyone, don’t let anyone convince you that something is fine when you feel in your gut that it’s not. Trust your instincts!


#5

Just checking in to see how you’re feeling after surgery. Are you able to do PD or are you having to do HD temporarily?


#6

Oh dear!! Dialysis in NOT to be painful, so we must change your prescription to avoid this pain. First, the fact that you have this pain all the time points to the fact that probably your catheter is too long and/or the tip of the catheter is against your bowel. I do not know how tall you are. Surgeons usually try to match the catheter size to the patient’s torso length. There are shorter catheters made for children of all sizes. So you may need a simple xray to locate the catheter tip. Or speak to the surgeon about what size catheter was placed. You may need the catheter “manipulated” or replaced.
Second, tidal dialysis should work well if the prescription set on the machine is set specifically for you. The theory of tidal is that the abdomen is never fully drained. A residual volume remains all the time. In order to know what your residual volume should be, infuse a bag of solution which is attached to a scale on the IV pole. Then begin the drain and note when the pain begins (or escalates in your case since you always have pain). For example, infuse 2 liters, then drain and measure remaining volume when painful. If pain starts after 1.5 liters drained, then your residual volume should be 500mL.
Since you are new to PD you probably have a fair amount of residual renal function (urine clearance). So this tidal prescription is not a full dialysis prescription that patients need when they no longer have any kidney function. But your overall clearances would probably be fine. Your nephrologist and PD nurse will be sure to measure and evaluate this. It is true in most cases that the pain of draining lessens or goes away all together in the first few weeks of PD. But your situation does not seem likely to change with time. I hope these comments help, and please let me know if I can be of further help. Good lucki!!


#7

Well it turns out my catheter was twisted around my bowels pretty badly. My surgeon said everything was VERY inflamed and that my omentum migrated down to the bottom of my peritoneum and was intertwined with it as well. I had surgery to fix it and they waited a week before I restarted PD. I just restarted today and the first drain went fine and then the second was back to being horribly painful, and my nurse eased me into it by only doing the manual bags instead of the cycler. I’m so disheartened. I want PD to work out SO badly, but the pain is really bad, I’m now at almost 10 hours after my last drain and I can still feel the pain. I’m so worried I won’t be able to continue with this, and sadly HD is not a good option for me as I wouldn’t be able to keep my job or my home and I have nowhere else to live. I don’t want to give up on dialysis but I also don’t think I can live in this much pain. I’m not really to call my life quits yet but I’m starting to feel like there aren’t any good options. Any advice? Could the catheter have gotten tangled again that quickly? If it makes a difference or not I have a coil catheter and not a straight one.
Thank you. I’m tryin so hard not to feel hopeless.


#8

I am sorry that I didn’t reply sooner.

If you can’t do PD, you don’t have to lose your job or your home. Patients can work by doing HD at home or in a clinic by scheduling it around their work hours. The FDA has even approved the NxStage HHD machine for solo use and nephrologists can allow patients to do HHD without a partner when the patient is well trained, knows when to ask for help, and has a backup plan for how to get help when needed. If you can’t do HHD for some reason, look for a clinic that offers dialysis starting after 5 p.m. Some clinics offer nocturnal dialysis where patients dialyze for longer overnight while sleeping 3 nights a week. There are options. If you’re on Facebook, you might want to join the Home Dialysis Central Facebook group. There are several patients there who work and do HHD. This is a closed group so you don’t have to worry about anyone outside the group seeing what you post there. https://www.facebook.com/groups/HomeDialysisCentral/