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!
P.S Happy New Year to you all!
FSGS age 47
APD since Sept 2103
Active on TX list since Jan 2013