How to Solve a Problem like ..... Laxatives!

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How to Solve a Problem like ..... Laxatives!

Postby jooles » Sat Dec 28, 2013 9:17 pm

Advanced Warning: May Contain Graphic Details!

Hi Chaps! So here I am again writing about my bowels! After much forum discussion and advice, I have now been prescribed Macrogol (another name for Laxido) and I take one sachet a day around midday. I also have two scoops of Optifibre in my morning cuppa. Whilst I think this is keeping constipation at bay, I am now experiencing other difficulties .....

My cylcer programme has been adjusted to enable me to sleep for longer periods in between drain pains. I have three cycles of 1500ml over a nine hour period. Average dwells are 2hrs 45 mins.UF is normally around 150 -180. Sleep is a little better but I am still sitting up and rocking backwards and forwards for two to three of the drains. The initial drain is set to 0 and I normally drain around 16ml - this one is quite painful as I am 'dry' during the day ( my programme ends with a slight fill of 100ml to ease pain of tube during the day). The two middle drains are set to tidal, so sometimes I can sleep through the drain. However, the last few nights have been disturbed because I think the pain of the drain seems to irritate my bowel, resulting in a mad dash (if there is such thing when one has to disconnect) to the loo. I think this is because the end of the catheter hits the walls of my bowel. So now the only solution I think is to ensure my bowel is TOTALLY empty before therapy starts at 10pm. Given I eat only one main meal a day in the evening, I am worried that anymore / any later laxatives will be robbing me of much needed nutrients..... The last drain is always painful - seems to go on forever and I almost always bypass.

Does anyone else out there have this problem - or better still, a solution? I am due to go back to work in the New Year and am worried abut my lack of decent sleep, so any advice would be most welcome!

On a more positive note, I gave the cycler a break on Christmas night and felt fine the next day. Didn't sleep as well as I had hoped as I think I subconsciously missed the tube tied to my leg! But I have decided that at the weekends I will do manual exchanges in the hope that I can sleep better. Does anyone else do this?

Thoughts, opinions, experiences welcome!

Jooles

P.S Happy New Year to you all!
FSGS age 47
APD since Sept 2103
Active on TX list since Jan 2013
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Re: How to Solve a Problem like ..... Laxatives!

Postby MandyV » Sun Dec 29, 2013 6:44 pm

Hey jooles - glad to hear that things are getting better but imho you should not still be getting pain such that you are waking up most if not every night. I would find the most experienced PD nurse and sit and insist that they discuss the options with you. I must say that the idea of the catheter end being a bit long sounds interesting. I had fluid in most days - only went without when I was flying or if I was going to the gym etc and I did remember feeling 'odd' without fluid; but I can say that the idea of being woken up so regularly is horrible. I was only woken up if the alarm went off. I think that you have gone past the 'teething period' and they should be thinking more laterally to help you. PD should not be painful. Good luck and hope that 2014 is a great year for you.
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Re: How to Solve a Problem like ..... Laxatives!

Postby jbell » Fri Jan 03, 2014 8:18 pm

Hi jooles can you please tell me did your (or anyones ) bowel problems cause a problem when you had operation for pd tube being fitted for APD?. Its obviousley causing problems now with drain pain, has that got any better ?. I am asking because I am having PD recommended by my renal dr and dialysis nurse as the best option for me. I will aleays have to do it manually 4 x a day as my house is no good for APD, thats been completely ruled out. My worry is that through nerve damage my bowels are completely paralized. About 17 years ago I actually didnt go to the loo for 3 months, my gp just kept giving me laxarives and enemas and nothing worked (evan picolax). A,yway I eventually collapsed and straight into hospital. Where it was discovered my bowels no longer worked. I was put on a lax called co-danthrusate which I have been taking for 17 years twice a week. I started on 5mls and up until recently I was taking 40mls everytime as they were obviousley waring off and not working so well. Also a good few years ago this lax was banned unless you were terminally ill, but I was kept on it as my only option was a colostomy and because of ckd this is not an option. I have now been put on some new tablets to help my food digest, so I have been able to drop the dose of lax to 25mls 3 times a week. When I need the loo its very, extremely urgent !. I am worried that my constant constipation will cause problems and pain. I dont understand why this is being pushed as the best option for me. One renal dr just said the pd operation was easy so have the tube fitted and see if it works and if it does not work just switch to HD. She said it like it was nothing !, but I think that might not be all that easy. Any advice from anyone with similar problems would be really helpfull as I am trying to decide what to tell my dr in a few weeks. Obviousley I am not starting dialysis right now, but it moves closer all the time, meanwhile I havent got a clue what to do. Thanx janbell
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 15
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Re: How to Solve a Problem like ..... Laxatives!

Postby cathys8 » Fri Jan 03, 2014 8:36 pm

Hi jbell
Like jooles I have had loads of problems with drain pain when on the machine. On 3 separate occasions I took picolax to clear me out and as a result the machine wasn't painful - but only for a day or two. the drain pain always came back. So at the moment I am back on manual exchanges and what I can tell you is that I have little or no pain - as soon as the pain starts I stop draining. This seems to be working fine for me at the moment (although it really limits your free having to do an exchange every 4 hours).

Although the PD tube op isn't massive I would look for more reassurance for your doctors that it will work in your case before you proceed - I have been warned a lot not to get constipated. I don't know much about HD but if you can't do PD overnight haven't you lost one of the big advantages of PD? Would HD three times a week be easier?

Hope that helps
cathy
40 yr old with Alports syndrome
CAPD since Sept 13
Nov 2012 - listed for transplant
27 Mar 2014 - I got the call!!
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Re: How to Solve a Problem like ..... Laxatives!

Postby Unifluzie » Sat Jan 04, 2014 10:47 am

I found one of the best laxatives I used while on pd was docusate, I sympathise on the drain pain, I had some awful nights on pd. I also had to go dry over the day as I was getting a prolapse from the weight pushing down. I would def sit down with your pd nurses and discuss your options, are you getting any crud in the line, sometimes if the holes are slightly obstructed then the machine will suck harder to get the fluid out, you might need something down the line to make sure??

Hope things resolve for you
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Re: How to Solve a Problem like ..... Laxatives!

Postby chrisb » Sat Jan 04, 2014 1:11 pm

Jan

i never had problems with constipation until i had the PD tube fitted but they knew i would afterwards so it is obviously a recognized side-effect. i would say that if you have extreme problems now they are not likely to improve with a PD tube fitted. its very easy for them to say lets fit it and see, they did that with me and 6 months later with constant irritations and a hernia they still wont remove it. they say they will leave it in "just in case". PD can hardly be the best bet for you especially if you will have to do manual exchanges. what they really mean is that its best for the NHS - its a hell of alot cheaper to send you home with a machine or better still just bags of fluid than it is to let you have HD. do not let them talk you into something unless you are 100% certain it is best for you. they wont like it - their attitude to me certainly changed when i said PD would not be best for me. anyone would be forgiven for thinking that perhaps incentives/bonuses had been lost because of my decision!!
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Re: How to Solve a Problem like ..... Laxatives!

Postby wagolynn » Sat Jan 04, 2014 4:27 pm

PD gives better results than Haemodialysis i.e. the end result is closer to that of a working kidney. This is why, if possible, it is the preferred method.
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Re: How to Solve a Problem like ..... Laxatives!

Postby MandyV » Sat Jan 04, 2014 5:00 pm

PD (of which I am a huge fan) is not 'better than HD' per se - they are different and PD has a number of advantages not least of which is that it seems to protect your residual renal function (RRF) which is very useful indeed. Neither of them (unless you go for daily nocturnal HD) give a function close to that of a fully functioning kidney. PD allows you to remain in control of your own treatment, be flexible and arrange treatment around your life to a considerable extent and of course because it does not require expensive machines or capital infrastructure is cheaper than HD but I am not aware of any incentives (though given some units low PD numbers I think that would be sensible!). Generally because you protect your RRF you have less dietary and fluid restrictions too.

It is not PD which causes constipation it is that constipation can cause problems with PD and obviously if you restrict your fluid then that can cause constipation (hence why most of the 'laxatives' are really more 'softeners' ...)
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