I had my j-pouch take down in 2015, following a 10 year battle with UC and since then there is little rest from the battle, all be it a new one! I've tried multiple medications, none of which seem to work for long (if at all). I currently have loperamide (30mg a day), which is supposed to slow things down, and use codeine and paracetamol for pain, but right now, none of these are working either! I've been prescribed Questran for the last 8 months, which helped with acid output and ‘butt burn’ and it seemed like it was helping although we currently have supply issues in the UK so can no longer get get this! Then I had a gallstone attack 4 months and needed my gallbladder removed. Since then, nothing has worked.
I can't seem to lower my output to anything less than 12 times a day (plus at least twice at night), so I eat well but cannot gain weight because the food doesn't stay in me long enough, and 'butt burn' is a constant agony.
I have been smoking cannabis for about 3 years following very 'off the record' discussions with my consultant, as I had no appetite and couldn't sleep, and there was always pain somewhere and prior to my gallbladder removal and it definitely helped with the sleep and appetite but as I’m in the UK, this was all a little naughty as up until recently all forms were illegal.
We can now buy CBD products in the UK, and although it is cleared for medical use it really is in the most extreme cases and diseases (and even then almost impossible to get it signed off by doctors).
Because it's so new here, no one really understands it, and can give me any real information on what's best for Pouchers! There’s a lot about how good it is for UC and CD but not after surgery.
Any advice or information you can share would be really appreciated.