Help! Pain management after surgery

[ulrika]

My daughter came home yesterday, after having surgery last Friday. They inserted the PD catheter, and she has two incisions. She has been crying in agony ever since she came home, and she can usually handle a lot of pain.
I feel so helpless, because there is nothing I can do for her.
Does anyone here have any tips?

Hugs, Ulrika

[Ginger]

Didn't they give her a prescription for a strong pain med?  They should have! When I had my cath placed I had a prescription for Percocet. I only used a couple of them but they were very helpful. It does get better after the first day. Is it the cath site or the incision that is the worst? My incision gave me more trouble than the cath insertion site. It also takes a little time for the body to get used to the tube being there.  Suggestions: No lifting, walk slowly but do walk and stand up straight, and try not to go up or down too many stairs for the first couple of days.  Try to keep moving as sitting or laying too long the muscles get too tight and cause more pain when you do move. If the pain does not get better call the MD for a strong pain med!!  Ginger

[ulrika]

No, she did not get any pain pills. In the hospital they gave her T3's, which did not help.
I think it is gas pain, that can be excruciating after surgery.
She is moving around more today, and it seems to help a bit.
How do you find PD?

[kevno]

It must be very painful for your daughter, they do not like to give too many pain killer with a PD tube. Pain killers can block you up. Now that is painful with a PD tube. The tube is painful at first, the surgeons over in the UK put the tube through a muscle, it takes a bit of time for the muscle to get used to the tube. Sorry do not know what to say to help. I have had 5 PD tubes in, Very painful for the first week or so. Then if i did get blocked up, given laxatives, which helps with the pain a lot, there are a few painkillers out there which do not block you up. I do not say other that blocked up? Is your daughter going to the toilet OK? sorry to ask. If not that could be one reason why she is in so much pain. But she only had the operation on Friday, I would leave it a few days, see how she does I'm sure she will be OK. If not get the Doctor out to check her over.

Kevno

[Ginger]

If you think that the pain is 'gas pain', walking is the best way to move it along.  Also try not to eat foods that naturally produce gas--like cabbage, broccoli and beans. 
I have been on PD for almost 2yrs now and it keeps me functional and able to maintain most of my lifestyle.  I use a cycler at night and am dry during the day.  Most days after I finish dialysis, I forget about it until that evening when I hook up again.  Occasionally I will put in a 2L manual bag if I feel extra tired for no particular reason or if I seem to be holding extra fluid. In general I find PD very doable. I hope things improve rapidly for your daughter.

Ginger

[ulrika]

She saw the doctor yesterday, he thought that the pain was caused by dry belly, so they put in 1 liter, and left 1/2 liter in for her system to absorb.
She is starting her pd training on May 11th.
Your experience on pd is very encouraging.

Ulrika

[ulrika]

Help!
Sandra is in agony, I don't think she has had one good day since surgery. two and a half weeks ago.
I have been able to see it on her, but she has been trying to put up a front for the rest of us. But she has been in tears for the last three days, and she has always been able to withstand pain.
It has been long enough for the effects of surgery to subside. Will she be stuck with this pain and discomfort? She says, if that is the case, she will not be able to handle it. We are worried that the peritoneal tub is too long, and that it has wrapped itself around some inner organs. She is a tiny girl.
Sandra is starting her dialysis training tomorrow. She has been taking a lot of laxatives upon the advice of the kidney care team, but they don't seem to help. They are talking about dry belly, but the discomfort and pain did not go away after the first time they put some fluid in.
Has anyone else gone through this? We are at our wits end. I cannot stand to see her like this. I wish it were me.

Ulrika

[kevno]

All I can say is see how she is after a couple of days on dialysis, it could be a dry belly, in that case it can take a few exchanges before the pain will slowly go. You have one more thing to be aware about, when she is fully drained out, her shoulder my be very painful. There is a nerve that runs from the peritoneal to the shoulder, it can be very painful,the pain usually goes as soon as you start to drain in again. If she gets the pain usually after a couple of months it stops.

I had a total of five tubes in, got the pain in the shoulder with 3 of the tubes. Also the tube can suck on the side of the wall while draining out, that can hurt too till you get used to it. Sorry the news is not great.  But I would give anything to stop haemo and go back onto CAPD. Had 12 good years on CAPD, I was very well on CAPD.

Kevno

[ulrika]

Thanks Kevno, for your input

What a day this has been. Sandra is on her way to the hospital, where she will start dialysis tomorrow. She will be in bed for two days on the cycler, come home on the weekend, and I will go with her to start the training all next week. It's a two hr. drive, and her sister will be with her for the next two days. I so hope that the pain disappear when she starts this process.
To top it all off, her fistula stopped working today. It was done 3 months ago, and has been very strong ever since.....buzzing, and swooshing. We have no idea of what could have happened. Hopefully it does not mean another operation.

Ulrika

[kevno]

ulrika,

I hope everything works out OK for Sandra. It must be very hard for you, I know that you feel helpless just now. So much to learn about dialysis. That is, if Sandra lets you in too her dialysis. I never let my family. I knew they were always there for me.

Yours

Kevno

[ulrika]

Thanks. I read in another post, that your story is very similar to Sandra's.
She too was born with reflux, and was in and out of hospital with high fevers due to infections.
They sent her home with antibiotics until the next time.
When she was 6, we went to Europe for a visit. I decided to take her to a specialist there, and she was promptly diagnosed, and had surgery. We were told that she had some scarring on her kidneys, but that the kidneys would regenerate themselves because she was so young. So we were never especially worried. Now the whole thing has come back with a vengeance, with end stage renal failure.

Ulrika

[Ginger]

Ulrika,
Sorry to hear that Sandra is in so much pain.  Hopefully it will go away once she has been on dialysis for a couple of days.  Kevno described some of the pain that can occur even with dialysis very well. If the tube is rubbing on something to cause the pain, then a couple of days dialysis should make it some better, as the tube can shift positions in the abdomen. Praying that all goes well from now on.    Ginger

[ulrika]

Thanks Ginger;
I hope the dialysis will take away the pain, as long as it isn't something more serious.
Ulrika

[Panda_9]

When I had my catheter inserted I was in excruciating pain a couple of hours after I got home. I couldn't sit, lay down, or move. My partner had to hold me up while he rang the hospital. It turned out I was very badly constipated which was causing the pain. Almost required dynamite 
The important thing with getting the PD catheter in is that you do not get constipated. I wasn't aware of this until after the fact, and then realised I had not been given any preventatives prior to, or after the surgery.
Hopefully the fistula can be fixed. The first one I had clotted after 8 weeks, a few days before I was going to start using it. When I first saw about it they said it still had a little pulse, and to come back in a couple of days. I just think if only they had of fixed it then and there it might still be working. Thats one less spot I will have for potential access if I ever need it in the future