So glad I have joined this group as finding it so interesting reading everybody’s different experiences. When I was little I had several bouts of what I was told was rumbling appendix which now I understand was cystinuria it wasn’t until I had my first child and she was 1 years old when I was 28 that I was diagnosed. I definitely feel that lifestyle from my experience has a massive impact on stone formation. My first stone was after a bereavement and then my second stone was when I was pregnant with my second child. Being pregnant with a stone was very difficult as there wasn’t a lot that they could do but once I had the baby I was able to pass the stone. Since then I have really worked on trying to do all I can in prevention. I get a little warning signs that tell me I need to drink more I feel a hot burning in my back and I can always tell by the look of my face that I need to drink more my husband notices this to and will often hand me a glass of water. I was terrible at drinking water and had to really train myself to drink a lot more my husband had a great idea and bought me a bottle marked with what I should drink hourly I find this really helpful and I take it everywhere with me. The guideline is to drink two bottles a day but obviously we have to drink a lot more than the average person so I make sure I drink at least three which is easily done when spaced out. I do eat everything but I definitely monitor how much animal protein I intake and choose to get my protein from other sources. I find it so interesting how varied this condition is I have had two stones to date and have a nine -month-old now and both of my stones have been after a pregnancy or while pregnant but I’m hoping that because I’m really trying to look after myself that I’ll be okay. I don’t know about anyone else but directly after having my two bouts of stones I was petrified to even eat anything or do anything that could possibly give me another. I only have to go to Guys Hospital yearly now and find it so beneficial as it gives me the reassurance I need the team there are fantastic. I went at the start of the year just after having my baby and I was stone free then so I’ll just try to carry on as I am and hope for the best!
My experience so far: So glad I have... - Cystinuria Support