I can't believe it's been almost a year. I'm starting to get back to normal. I can go out on my own. I've started volunteering. We bought a camper van so we could go away on short trips, as the amount of kit I have to take with me would fill a suitcase on it's own! I feel a lot more positive.
I've struggled with infections since the op, averaging two a month, although I went 6 weeks infection free until last week.
Overall I'd say the pain is 85-90% gone. The remaining 10-15% can usually be controlled with Gabapentin and Amitriptyline, although I have the odd day or so that's painful. Still, nothing like before. I'm struggling with fatigue but I think that's the infections. My consultant has started me on a course of low dose anti-biotics over several months to see if that improves.
When I get an infection, the first sign is tiredness and I notice more mucus coming out when I self catheterise. After a day or so, it gets to the point where I have to use a 50ml bladder syringe to draw out all the gunk so the pouch will empty. Then comes the fatigue. I feel like such a pansy but I cannot stay awake. I'll sleep for hours during the day. Then comes the pain, not unbearable, just sharp jabs in the pouch and kidneys.
Very rarely I'll feel queasy and have flu-like symptoms, but my new GP is good at getting me on a course of anti-biotics quickly. I try to get rid off it myself by drinking lots of water for a few days, but once there is blood in the mucus I get a course from the doctors.
BUT, the most amazing thing is, something most people take for granted, now I can SLEEP! I sleep 8 hours uninterrupted. I had to set an alarm the first few months to wake me up at 2am to remind me get up and go to the toilet. But the pouch holds a lot more now. I can't tell you how much that has made a difference. I'd not slept properly and fully for 15 years.
The surgery last December was a success, it's just getting on top of these infections now. I've been looking for part time work for six months but it's so difficult when I've been out of work for two an a half years. It's starting to really get me down. The area where I live has a high rate of unemployment which makes it all the more difficult.
I had a scan last month which showed a few mucus balls that needed flushing out of the pouch but no stones. My consultant is concerned that some of the mucus might develop into stones so he's reviewing me in four months. The radiology nurse also found a 2cm cyst on my right overy which wasn't there six months ago. I had noticed a dull pain on my right side but thought nothing of it. They review it at the next scan.
So, all in all, I'm getting there! Finally!
