Tenckhoff pain

[ItsNotATan]

Hi everyone,
I am Wattles sister. As you know she is having a well deserved holiday with her family and so Ive come here to grizzle to somebody who understands as my normal ear is out of reach.
I had my cath placed nine days ago.
It wasnt too bad and the incisions never really hurt. I also managed to avoid throwing up after the operation which is a big plus for me. Ive had a few small problems since, the bleeding has only just really stopped and I found out I am allergic to tegaderm which gave me really nasty blisters.

My major problem is severe cramping. Its been going on the whole time but really seems to be getting worse. It feels like i have been in labour for nine days and I am exhausted. I had my first flush yesterday and told them I cant really take it anymore but their only suggestions seem to be that they hope it will settle once I start using it on Monday. Not sure how I will even last until Monday.

I am not constipated, far from it, I took so much to avoid that after having an obstruction a couple of years ago that I had the opposite problem.
Sometimes shifting position lessens the pain but it never really goes away and I feel really bruised even in my legs now. I cant find a position lying down that i dont cramp in.
I dont have an infection.
Ive tried taking buscopan, didnt make a difference.
Im getting pretty stressed out as I really want this option to work for me but I cant take this.

[boswife]

Welcome to you    and i can say i sure hope things get better for you soon !!!  CrampinG MUST STOP!!  hope you find lots of info you need here.  Lots of good no GREAT people here to help ya out..

[calypso]

I am not constipated, far from it, I took so much to avoid that after having an obstruction a couple of years ago that I had the opposite problem.
Sometimes shifting position lessens the pain but it never really goes away and I feel really bruised even in my legs now. I cant find a position lying down that i dont cramp in.

Although I'm severely short on information about you, I take it from your post that by the opposite of constipation you mean diarrhea or loose stools. How are your potassium levels? If the K is too high or too low it may cause cramping. Does it get worse doing an exchange on PD? Where is the pain exactly? All over? Just in your legs? When does it start or stop? Or is it constant? Take some time to post more information and be specific. Talk us through a whole day from the time you wake up to the time you go to sleep because with the limited info given it's impossible to make a diagnosis.

Given that the staff at your clinic knows you better than we do, I'd take their advice and just chalk it up to your needing to get used to it, and that these pains will go away on their own as your body adjusts. Don't give up or lose hope yet, but do keep at it to find the cause and the remedy.

You titled the post Tenckhoff pain yet in your post you mention pain that never goes away and feeling bruised even in your legs. You see how impossible it is to determine what is going on with you given the sparse information you've given us right?

In addition to a chemical imbalance such as the K I mentioned earlier, it could also be you are overloaded with fluid. Those should be remedied with more dialysis which you will get when you do more exchanges when you start. But PD is a slow dialysis process and it may take anywhere from a few days to weeks before it can clear out most of the toxins, depending on your current state and your diet from this point on.

So in short, like your clinic told you, just hang in there and ask them about pain management as you shouldn't have to suffer. Good luck I hope you feel better soon.

[ItsNotATan]

Hi Calypso,

Im a PKD patient and still make urine so I only have a "small" amount of fluid resulting in a little swelling in my feet and ankles. I am not fluid restricted as yet. My Potassium is "low normal", I saw the dietician yesterday and she said I need to concentrate on eating more protein and not to worry about trying to limit phosphates at the moment as she thinks getting enough meat and dairy to increase my protein  is more important for now.

The pain i get feels like a stabbing in the lower abdomen with sharp pain and cramping on both sides around my hip region. I get the same sort of pain during drain but not as bad as what I am complaining about. I can deal with that as it is not quite as intense, not at all nice and if you knew it was going to continue youd need painkiller but you can put up with it for a few minutes if you know what i mean.

I seem to get this pain more as the evening progresses and often its so bad I cant find a position that isnt too painful to sleep. It also hurts alot driving in the car over bumps etc and I found yesterday if I arched my back as far as possible and stuck my stomach out while on the drive home the pain eased a little.

The cramping I get all over my stomach and in my legs I think is a result of the stabbing pain irritating everything.
It gets so bad I feel like I am going to throw up.

The PD centre sent me to emergency the other day and I explained this all to them and got some oxycodone. I HATE taking painkillers and managed with only two single panadeine forte after the operation. The cramps/pain were there the next day but I wrote them off as a combination of pain from the op and period cramps. I dont think they were period cramps now though and they are much worse now and could not be mistaken for period cramping.
They did not have any idea for me other than "hopefully you will get used to it".
Im NOT being a baby this is not the sort of thing you can get used to.
I took the oxycodone last night and still did not sleep at all.
Tonight I seem a bit more comfortable but that may be because I have started training and have a bit of fluid in. It hasnt gone but its bearable.

I asked in ER if the cath could be in the wrong place (I think its too long) but was told "knowng your surgeon no"

[cookie2008]

You talked to your pd nurse and the er.  Please call your surgeon that put your pd cath in and explain what is happening to them let them check it.  Having pain is one thing but the pain you are having shouldnt be.

[rsudock]

did you have these issues after the catheter was put in? my brother had similar symptoms and he needed his hip replaced...

[ItsNotATan]

Sorry ive been busy and exhausted.
The pain is better now Im full but hurts quite badly during drain and refill. My sister just suggested I try the drain in on slow and see if that helps because it really isnt bareable, 20 minutes of pain four times a day is really getting me down.

Why did your brother need his hip replaced? was it an issue he had before PD or due to the operation?

[rsudock]

my bro has only been on hemo. but he had his hip replaced after 4 years with a transplant. he always needed high doses of steroids to stop rejection episodes. The high doses of steroids left him with avascular necrosis...just a side effect from transplant drugs!

I hope you figure out this pain soon...

xo,
R

[KICKSTART]

It takes approx 6 weeks for your body to heal after a cath is put in , so give it time.  Draining and filling can be uncomfortable till your body gets used to it and that will take time too. Are you saying you can drain and refill in 20 mins ? for a newbie that is awful fast, you can do that but i would expect only someone who has been on pd for quite a while to go that fast , try slowing it down and see .

[lawphi]

My husband had to have he had his pd tube placed.  It ended up curling around his spleen.  It was successfully manipulated and he didn't have any issues.

[ItsNotATan]

Hi Kickstart,
Sorry Im not being very clear in my posts, no it takes me far longer than twenty minutes, just the pain lasts about 20 minutes.
I have been trying the slow setting for the drain in and it seems to help a bit.

I am going to try to persevere for a while and see if things improve before I call the surgeon, I don't want to have another operation unnecessarily and I really want PD to work.