I'm a 49 female with Lupus, Crest Syndrome, Hoshimotos, hypothyroidism and Lymes Disease.

Hi Angela there is one or two things you must remember to avoid dark or blood in your bag and that is to drink a lot and avoid doing anything too strenuous I cut my back garden Friday afternoon and ended up bleeding, sore and uncomfortable plus pushed through with minimal sit down which is a must with one of these in.  I am attached to day bag as the valve was calling me to the toilet and the sensation of this hard for me to handle.  Don’t get me wrong I still get these throughout the day having bag attached but at least I know when I need to empty out.  I also have underlying disabilities including fibromyalgia everywhere, chronic Coccygodynia, sciatic nerve damage, nerve damage to both feet, breast cancer 2017, failed bladder Botox 20 injections with many side effects including shutting down my bowel, making me feel itchy, curling my finger nails, struggling with eating and swallowing and digestion of food.  Also getting a lot more tired although never have much energy anyway as in 24/7 chronic constant agony.  Have hospital in the morning at 9 to put me through a trial without the catheter which I know won’t be happening as damage already done following spending 7 hours drinking in region of over 2 litres and before call to empty but not still emptying, the following day was 9 hours without call to empty again not emptying not given any post Botox paperwork had to speak to consultants secretary then passed through to bowel and bladder clinical measurements team and told to get urgent appointment with community nurse or must come in to A n E which had to do for emergency catheter and nightbag attached which took up the backlog leaving hospital with retention 750+mls.  That is all I was supplied with.  Followed up by bowel and bladder nurse and again told to contact CN Team for flip flap valve and supply of bags to keep me going as recommoned trial this for a month so will see what is in store tomorrow and hopefully find out who will be my back up support as because I am not immobile or housebound I do not come under the community nurses at my gp surgery something else I do not need as nearly ran out of nightbags last week and these needs all need to be ordered not kept in stock so I was furnished with 3 carrier bags full of these needs not just what I had ran out of still not seen what has been delivered.  So will be getting all this put right tomorrow as don’t need any more experiments which only worsen what should never have been guinea pig for and still have the shutting down of my Bowel to be investigated to come.  Hope this is of some help Julia