I need some advice on adjusting to PD

[Quickfeet]

I have been doing CAPD for about a week now and I am still struggling with pain. Can any of you with experience give some tips about adjusting to PD. I'm having trouble dealing with the drain pain and the completely full pain. I can't fill or drain lying down with out pain and discomfort. Once I'm full I can only sit or stand; if I lay down it hurts.

Does solution temperature make a difference? Do you prefer room temp, body temp, or slightly warmer than body temp?

What about abdominal muscles? Is it best to have them flexed while doing exchanges or relaxed?

Any and all advice wether it be physical or mental would very much appreciated. I want to make PD work for me. Right now PD is kicking my butt.

[KICKSTART]

Ok , firstly a week is nothing , it wont happen overnight. You have to get used to all that fluid inside you and you will still be healing from having your catheter put in, it takes 6-8 weeks to heal inside.
Why do you lie down to fill or drain?  You are doing manual exchanges ..CAPD ? so you shouldnt need to lie down. Just sit in a comfy chair. The reason you feel discomfort when you lie down is because the fluid is pressing against everything, but you will get used to it in time.
The easiest way to stop drain pain is , as soon as it starts to pinch ,stop draining, shut your cath off, and again do your exchanges sat up if they are manual !
We always did our exchanges with the fluid at body temp.
Relax,relax,relax! it will take time , but it does all settle down , it takes weeks to adjust, just give it time. 

[paul.karen]

Well KS said it like it is.
Do you have a warmer for your fluids?  Room Temp isnt good it should be body temp.  if it is cold it will hurt (i am told).  The drain pain should fade..  I hope things improve for you.

[Quickfeet]

I understand what you are saying kickstart, but my nurse makes me feel like am not progressing fast enough. I have had my tube in for at least 6 weeks. I had a week of training two weeks ago and started at home about a week ago.  When I complain about pain my nurse acts as if it is unusual to her. She also said that I should feel best laying down and that I wont be able to do CCPD because of my pain. She is also mad because I can't tolerate more than a liter in my abdomen while sleeping, but I can do 2.4 in the day time. She says it should be the other way around. And I don't know either way but I know what hurts.

I can't do anything about the drain pain. If I clamp it and wait a bit, it hurts just as bad as soon as I start draining again. Also when I try to tell the nurse that I a get sick to my stomach while filling she asks me if I have any of the signs of peritonitis.  I tried to tell her it was probably just due to my organs moving around and she tells me they shouldn't be moving at all.

My nurse makes me feel like everyone else she has trained only had minor problems. Does this make me a baby? Or do I just complain too much? Or is it because she has never been in my place?

My first week of training was like being in the Spanish Inquisition. things are much better now But there is still a lot of adjustment to go.
I don't know what my point is. I caught something from my daughter and I feel like I have the Plague. I was just hoping that there might be some tricks out there to make this transition a little easier.

[murf]

When I was training, the nurse said that crossing your legs during drain pain may help. I don't suffer that pain but have terrible inflow pain. I use a balanced bag that has less PH and it works really well.

[tito]

I had drain pain when I first started with the cycler. I did go away. I do one manual exchange during the day. You will get better.

The thing I hate to hear is how your nurse is mad at you. Mad? It's not for her to judge. If you have pain, you have pain, and it is up to her to help you to find comfort. Do not think less of yourself - you will get better. It's not your "fault".

[Quickfeet]

I'm not really sure why she is so worried about how much I have in at night. I have read about people being dry part of the day. Why can't I be dry at night?

Tito as far as my nurse goes, she is a really nice lady. I think she worries about her patients too much. When I say she was "mad", you need to understand that I'm half crazy, the other half is scared, and the rest of me is worn out.

Now that I'm done with my exchange, I get to wash my dishes. 

[jeannea]

You're not a wimp.  How you feel is how you feel and so if you say you have pain then I believe you.  Tell the nurse to help you not make it worse.

I do the cycler overnight so I can't give you exact experience.  But often I have pain with the first drain and fill.   It helps me if I get up and move around until I find a good position even if I look stupid doing it.  One night it hurt so bad I cried a lot and didn't think I could go through with it.  I thought I had peritonitis and I took a sample to my nurse the next day.  She told me that I didn't have peritonitis and some people will occasionally have a problem with the tube hitting a nerve and getting stuck against that nerve.  I've had it happen again and I know now to just keep dancing around until it moves away from the nerve.

Give yourself time to adjust.  PD isn't easy and your body may just need a little more time.  Don't give up.  And make sure you take care of yourself emotionally too.  If you're upset any pain can feel worse.  I'm so sorry you're having troubles with it.

Jeanne

[-Lady Noir-]

Mike still gets drain pain, sometimes quite badly.. and he's been on PD for almost a year.
I think how everyone deals with drain pain differs. Hopefully yours will fade, either that or you will find a trick to combat it 

And wow, your nurse sounds like she needs a reality check. That's very uncalled for and unfair. Seems pretty rank, considering she would be the one you depend on for all the 'professional support'. What a joke!

[looneytunes]

My husband did CAPD for several months and also had significant pain during the drain for the first week or so.  He would fill sitting in a chair and we heated the bags close to body temp.  When draining, he found that sitting in a rocking recliner helped as he would rock back and forth as he drained.  He said this motion kept the pain from being constant.  After his fill, he would go on about his day and come back to do the next exchange when it was time.  He said the extra weight he was carrying around in fluid made him sympathetic to pregant women     but after a couple of weeks it didn't bother him too much.  After a few months, he switched to the cycler at night.  The first fill was a little uncomfortable and he had some nights he felt sick to his stomach but again, he adjusted to it after a week or so.  The last drain in the morning, he would stand up for. 

[KICKSTART]

Quickfeet ..dont stress and dont take any notice of that nurse ..if only they did it !  Firstly when i said clamp off i meant stay clamped off dont try to drain again , do your fill , the amount left inside you is minimum. I did PD for 6 years and NEVER got rid of the drain pain ! What it is , is that you are at the end of your drain and imagine say you drink from a straw , when you get to the end of your drink if you still keep sucking you are pulling against the glass at the bottom ..same with drain pain ! Obviously you are in a different country and i dont know your height or build but 2.4 during the day is an awful lot of fluid. You have only been doing it a week you body needs time to stretch and adjust. We only start with 1l over here for a couple of weeks then up it bit by bit to 1.5. Of course you cant take it at night , as i said its got more room to spread out when you are flat. Do what you can ,then start to add say 200ml more each day or every other day till you build up to what you need to have in. You will get used to it if you build up , rather than fill up with a great big amount. Do your exchanges sat up , the the fluid is going to the lowest point in your stomach. Best of luck ..and sadly i think we all come across a nurse like that ..makes you wonder why they do the job doesnt it ?

[*kana*]

You will eventually get used to the full feeling. 

You might also want to switch over to the cycler and ask for tidal settings.  I used to get severe drain pain until they switched me to the cycler and tidal settings. 

[peleroja]

Darn, I wish I could help.  I've been on PD nearly 7 years, and I have never felt pain, whether draining or carrying 2500 ml.  Hope someone else will come along and have answers for you.

[Dex]

Quickfeet, I was having the same problem as you were and my doctor was literally no help, I tried t3's, sleeping pills,   And finally a little marijuana before bed(I had a bad case of insomnia caused from pain) honestly the marijuana helped me significantly, it broke me out of my depression, stopped my morning vomiting and dizziness, and allowed me to have a positive outlook on life. Not to mention I noticed I wasn't retaining as much water as before. Depending on where you live it's very possible to get a script for medical marijuana, if your in need(1 joint 30 minites before I hook up, and I sleep like a corpse) the other thing that helped me with the pain was actually a garter like belt system, which I found at. Department store, it's just a piece of foam that wraps around your stomach( also makes you look better physically, and allows me to have confidence on dates knowing they can't see my catheter). Now the key to why this works Sooo well for me is the magnets in the back of the wrap to sit nicely along my spine and kidney surgery scars, somehow it reduced my pain and increased my energy to the point where I am back to almost full energy. Thes two solutions worked wonders for me and my outlook on life now is 10x better then before. I really do hope you find a solution, as once thy pains gone, and your able to see the positive in life again everything getters better even the taste of food!(though that may be a side effect of the marijuana!)

ps this was typed on my iPhone while on my dialysis machine so please forgive any errors, an again hopefully something i'v said helps! Oh yea! Mj helps with gout as well!

[Quickfeet]

I have become accostomed to the pain. I have emotionally accepted the pain. So now I just deal with it.

Marijuana is not legal in Indiana. I have considered Marijuana for my gout, since my vicodin doesn't help very much, but the laws are very harsh here.

[RainingRoses]

Are you referring to the pinching pain--when part of your intestines (etc.) get sucked into the catheter?  Usually happens toward the end of the drain?   

Aside from that, something sounds structurally wrong with your catheter.  Just very odd that you tolerate so much fluid during the day when vertical but cannot tolerate it at night when horizontal.  Most catheters have a wire embedded in them so that they will show up on visual tests like xrays.  Maybe your neph/surgeon needs to take a look and see if the catheter is placed correctly?

You will eventually stretch out to accommodate more fluid, but this sure sounds like a different sort of issue.

[Quickfeet]

I can now handle the full bag but it seems to be the rate that I fill that makes a difference now. Fresenius has three speeds on the manual. the slowest doesn't hurt very much at all, but it takes about 2 hrs to fill. the middle setting takes about an hour and hurts a fair amount. the fastest setting hurts so bad.

The drain pain is like you said, my intestines getting sucked into the tube. I drain until no more fluid comes out. The last 5 minuets of draining is a killer.

My catheter has been moved once already because it was pinched before i ever used it.

[Dex]

If i'm still awake for that last part I bypass it, that small amount of fluid left shouldn't hurt, considering on the Baxter machines theres the tidal option. I'm unaware of the settings for your machine, but the tidal option made all the difference for me untill the catheter found a nice spot to sit in. (Tidal only drains and fills you at 80% using a estimated UF that you supply, so the drain a fill pains are usually left to a minimum)

[Quickfeet]

Dex, I do manual. So I have complete control.

I am trying to figure out if my body is still adjusting or if I'm as good as I'm going to get. How did you know your catheter was done moving to a good spot. Did it just stop hurting? did it gradually stop hurting? could you feel it repositioning itself?

I understand the drain pain, but I don't understand my fill pain. When I first started CAPD my belly hurt from stretching while filling and after i was done filling it would continue to ache from the stretching. Now though it is linked to how fast I fill and stops when I stop filling. The faster I fill the more it hurts. the pain isn't a stretch pain. it's intense and the pain isn't always in exactly the same spot. basically it hurts around my bladder and intestines. sometimes my testicles and the head of my penis hurts. Also it makes me really have to poop.

[billybags]

Quickfeet, This sounds awful. Hopefully it will pass with time. Have you tried standing up and bending your knees when you are draining, I bet you have. I would get them to give you an x-ray to see where your tube is, it may be in a funny position. Bowels and the peritoneum are so close to each other. I live in the UK and reading about different speeds with your manual bags seems alien to me. How does this work? A normal exchange over here with a catheter that's positioned correctly will take about 30 minutes from start to finish. If your cath is a bit on the "wonky" side about 40 minutes so why would a fill take you 2 hours, strange.

[gothiclovemonkey]

I just started pd as well, and i get the pains as well. One thing when draining the moment i feel the pinch i clamp stand up and shake myself a little and unclamp if im not done empting. It seems to help.
The pain of being too full is more annoying to me than painful, i feel like my tummy is stretched beyond its means, i figure this will take longer to get used to.
I was told to eat while i drain, it may help. Ive tried it, since i have trouble eating when im full of solution.
I still would rather feel these things than to ever do hemo again!

[Quickfeet]

that length of time is the slowest setting. i dont think it is really intened for use. if i could deal with the pain i could exchange in 30 to 40 mins probably. i tried standing up today, it was  far less painful. trades off with joint pain though.

[billybags]

Sounds like your getting there.

[wildcat]

I had a pain like yours.  It was because my catheter moved and adhered up high in the abdomen.  Needed X-rays to determine this.  Had to get it replaced and the second one was held down low with a stitch.  It works great now.  Dialysis is hard enough on a person, we should not have to live with pain too.  Good Luck.

[Marina]

I've  never  dealt  with any  type  of  pain  due to  PD. (**counts her  blessings!!!!!!**)

If  this hasn't  gotten  any  better,  go  see the  surgeon.     The  tip  of the  cath  is  hitting  something  it  shouldn't  be.

Hope  this  gets  resolved  real  soon!!!!!!!!!