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!
I just came across this doing research for a family member with IC. I am amazed at your bravery and resilience and I really admire the way you have shared this experience to help others. I wish you all the best.
ReplyDeleteHi I know this is all very old posts, but I was wondering how you are getting on now? I suffer from IC for many years now and have been thinking about bladder removal. Xxx
ReplyDeleteHi Susana,
DeleteI had trouble signing into my own blog, it's been so long I'd forgotten all my log in details!
I've been mostly okay until the last 6 months. I finally got married to my fiancé in 2014 whom I've been with since I was 16 (we're 33 now), taken a few holidays, and life has been good. I've been working full time for three years (quite long hours too). The only break that I had was 6 weeks when I had a large 'bladder' stone removed in May 2013. I think it's where I had a stone form around the catheter I had in for six weeks following the 2011 op, and part of it broke off when they took the catheter out. Over the course of a year, it grew to the size of a 50 pence piece. I had to have half my scar opened up again to get it out. The junior doctors seemed quite impressed with it when I came round from the anaesthetic and insisted I take a look!
I'm currently suffering with repeated kidney infections at the moment that are resistant to most antibiotics. I passed two small kidney stones a month ago, but despite CT scans showing there are no more stones, I’m still getting infections. I’m off work at the moment, and it looks like this may be long term until I can be seen in clinic.
If you’re considering bladder removal than I would say this: make sure there are no other options first. Don't misunderstand; I don't regret the surgery for a second, as it gave me a second chance at life, but it was my very last option. All other treatments had failed and I had been housebound for 3 years, prescribed Morphine, Tramadol and Diazepam for the pain, and it barely took the edge off. The surgery was the hardest thing I've ever done, particularly the second surgery, as there was a lot more messing around in there.
But if you are determined, and think that it will improve your quality of life, then go for it, but be informed, and do your research. I was lucky in that I live in the UK and my medical care was undertaken by our National Health Service. I don’t know how it would work in countries where you have to have insurance, and they only cover certain things.