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