Hey everyone,
Sorry for the lack of posts recently. I’ve had a lot going on recently but I’m going to try and start posting again more frequently. So as you may know, last year I had a sacral nerve stimulator fitted and the trial period proved successful but unfortunately I developed an infection in the wound and the device had to be removed. Since then I have been struggling a lot with infections again and now have a nasty infection which has passed to my kidneys. I was admitted to hospital last week but unfortunately I am still struggling with it. They now know the type of infection so hopefully I can be sorted out with the correct antibiotics. I have my pre-op in a few weeks so that I can hopefully have the permanent implant fitted.
On Friday I had an appointment in Manchester for a small bowel manometry but unfortunately the test couldn’t be carried out due to my naughty stomach playing up. They couldn’t get the catheter to pass from my stomach to my small intestine as it just kept on bouncing off the sides of my stomach, guessing this is due to my stretchy connective tissues. They weren’t happy to keep trying as there is a risk of perforation but I’m hoping my Doctor can think of another way to complete the study. I made the most of my time in Manchester and managed to have a nice time with my friend. I guess sometimes it’s nice to try and escape from reality for a few days, even if I had to take my EDS and other conditions with me.
Hope that you are as pain free as possible and have had a nice weekend!
Love & hugs, Charlie xo


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