Constant Pain with PD Catheter :(

[paryapta]

Dear friends

I am new to PD and I do two manual exchanges everyday. I have a serious problem with a sharp pain on the lower left side of my abdomen that radiates to my pelvis every day after the final drain. My catheter is placed on the right side. The pain stays on until the next fill. I take stool softeners and I have the pain even when I am not constipated. I don't know if it's the way I tape my catheter that's contributing to it. It's only been a couple of weeks since I started PD and I am beginning to get frustrated  . Today I left 300 ml of fluid inside (like I did not drain completely) and I was fine for sometime but the pain has come back. What could be wrong?

[Cordelia]

Could it be peritonitis perhaps?  I don't do PD but I hear that it can be pretty painful.   I'd get it checked, if I were you.

 

[paryapta]

I hope it's not peritonitis. I'm going to see my doctor tomorrow.

[Cordelia]

I hope its not either. I don't know what all the symptoms of it are, best to get it checked out.

From my understanding, peritonitis can be very painful, uhmmm not something you want to mess around with.

[bleija]

some people just have that pain when u empty... i know i do... cant stand to be empty... or it  could be an infection... call your nurse now and tell them bc the worse thing u can do is wait and see what happens. better to be concerned over nothing than to ignore something serious

[Cordelia]

I agree. I wouldn't wait til tomorrow, either, in case its serious, like an infection.

[MaryD]

When I had my catheter put in, at first I had a nagging pain in my lower left abdomen.  It felt as though I was being gently poked with a blunt knitting needle from the inside.  I was a little worried that it was going to be a permanent pain.  It disappeared in a week or so.

Your catheter's exit site is on your right hand side, but it actually goes up behind your navel and down the left hand side of you abdomen and snuggles down between your bowel and bladder slightly to the left of centre.

Drain pain is actually when the suction from your drain is trying to suck a little bit of your insides out with the drain fluid.  Have you tried twisting you cather "off" and then moving around to release and hopefully move the inside end of your catheter?  You should then be able to turn the catheter "on" again and complete your drain. 

If you have been careful with you preparation and your latest bag has been clear and sparkling it is unlikely to be peritonitis.  I had peritonitis a month ago.  I felt bloody fantastic in the morning, an OK bag, not very hungry at lunchtime with a windy stomach ache,  temperature of 37.7, a gruesome drain bag and very uncomfortable by 4pm.  Peritonitis is fairly fast once it gets going.  It wont be a pain between bags.

Try watching TV in a head down position for a short time (if you can), turning the catheter off and on during draining, doing stretch-type exercises - anything that you think could shift the inside end of your catheter even a little bit.

Reading your post I don't understand whether you are empty for periods of time during the day.  I would think that if you are it would be hard to move the catheter while you are empty

I hope you get sorted soon.  I am very pleased with PD

[highway61]

When I was on PD the only drain pain I had was when it seemed that the curly part of the catheter inside of me have have been up against an organ or other body part inside of me and was sucking on it.

At times like this I did the good ole PD shuffle, ya know, you shake it to the left, you shake it to the right, you shake with some heft, to get you through the night. You gently try to get it off of whatever it is sucking on.

I hope this is all you are experiencing.

[adairpete]

If it was peritonitis you wou know by now! When I first started pd I got a sharp pain like a cramp on the opposite side where the catheter exited whenever I did an exchange. Finally tapered off after about a month or so but now that I go empty at night sometimes the pain comes back. My feeling is your body is getting used to pd and hopefully in time it will adjust and go away.

[paryapta]

Ah! Thanks for all the replies... I could not meet my doctor but we ruled out peritonitis because I had no other symptoms. I have come to realize that the pain is just hunger and I try to eat or drink something right after my final drain. Although there is some growling/movement in the same area where the pain starts, the pain goes away when I eat or drink some chilled milk. And yeah some of you are right about the catheter moving inside .. I was making the mistake of twisting the tube when I capped it. I have stopped doing that and it helps. Phew... learning quite a few lessons each day! However, the good part is that I have started to be pretty active once again (I was almost bedridden) and my health is improving loads after I started PD.

[adairpete]

Glad to hear you're figuring out how to make the pain go away! I've been doing pd for almost 2 years and I love it compared to hemo-it really made life alot more normal and greatly improved my overall health. Hope things just keep getting better for you!

[Cordelia]

Whew! I'm so glad for you that peritontis was ruled out! That's a huge relief!     

[Willis]

My PD cath exit site is on the left side and after a year I still have slight pain most of the time on my right side just above the groin. If I have drain or fill pain that's where it hurts. It was worse at the beginning but I hardly notice it now. It's like having a mild arthritic pain in a joint that you get used to after awhile.

As someone else said above, I also have pain (severe cramps) when I'm empty. I'm on a cycler and usually start with a day fill of 1000ml and absorb 50-75% of that (as indicated by my initial drain each night). Ask your PD clinic if you can have a "day fill" (or night whichever it is when you're empty) and if they think that might help the cramps. Only side-effect is the absorption which is painless but makes losing weight harder. It's possible you could do the extra fill with Extraneal which would help with the absorption but it's a lot more expensive and my neph looked at me like I was crazy when I asked about it. For me it wasn't a big deal so I didn't push it.

I hope your pain goes away! If not talk to your surgeon...if it's caused by the cath there's a way to reposition the cath without surgery.

 

[Joe]

So glad to hear it's not peritonitis paryapta, that would stink. And you still get to drink milk? you lucky lady! I've been off dairy since last July. I miss milk a lot 

[tbarrett2533]

Sorry I am so late reading this (been super busy and not reading anyting over here, I miss you guys)

anyway, I like to think of myself as the CAPD princess where is my halo oh there it is  hahaha
anyway this happens to me ALL the time and well the first hundrend times or so that it did happen of course I freaked out and got all worried even went to the ER and was just decided that my cath migrated over to my membrane wall so some advice (I do not suggest that you do anything without first talking to your nurse or neph, but this is what works for me, and I can not speak for anyone else)

1.  when you are full get on all fours and rock back and foruth for a little bit............. keep doing it until you see an improvment
2.  run dry for a little bit, what I do is skip a treatment............ yes you heard me.......... dont tell my nurse or my Neph but sometimes if I just give my membrane a nice lil break it seems to do wonders and even improves my overall total UF for that day
3.  use heparin in my bag
3.  only use yellows............ no greens, and NEVER use reds
4.  lean on the opposite of the pain
5.  sit down to slow down the flow if you are draining or stand up if you are filling............. turn your transfer set up/down
and last but not sure.............. relax...................if you are new to PD it takes time to work out the kinks

I hope this helps even just a little bit 

Joe.......... I FINALLY got my PD nurse and Neph to  get Baxter to put those handy dandy RED clamps on my order sheet  so I will be one of the choosen ones soon 

[Joe]

Joe.......... I FINALLY got my PD nurse and Neph to  get Baxter to put those handy dandy RED clamps on my order sheet  so I will be one of the choosen ones soon 

WooHoo! I do really like those red clamps!