Member Blogs

I'm at UCH in London. I'm only on 1.5g of sodium bicarb. There's a complicated formula they use to work out dosage based on body weight and the difference between normal levels and actual levels. I'm sure you know all of that. I have a flexi-sig every year, the last time in May and that was clear. I'm not on antibiotics and I don't have reflux. I get twinges and aches and pains but not for reasons actually to do with the USM. I rarely get UTIs. I get other infections indirectly related to the USM which cause abcesses and fistulas but I carry erythromycin for that. It kills all my infections stone dead. It's available over the counter in some countries so it saves time on getting a GP appointment then a referral to UCH. I'm 95% continent, the other 5% being stress incontinence, or after I've had too much to drink or eaten something that has upset my stomach. Given the alternatives I'm happy with my USM. I don't want bags or catheters. I gave up hospital follow-up at one point because I thought if I got cancer I would end up with a stoma and a bag but UCH will give me another USM if this one fails.

You must be pretty fed up with infections and antibiotics. Have they given you any reasons why you're so prone to them? What's your relationship like with your doctors?