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Hi! I just wanted to post something again. It’s almost two years since my neobladder surgery now. I am trying to stop using an alarm clock to wake up in the middle of the night. I now wake up by myself when I need to go. I need to see if I actually keep waking up, since I probably cannot last an entire night without leaking, and I also need to avoid extending the bladder size.
My main problem these days is fatigue. I had hoped that it would improve over time, but it seems to get worse. I am able to cope at work but evenings and weekends I am exhausted. I am not sure if it has any relation to IC or the surgery, but my doctor is adamant that this is a typical outcome after so many years of terrible illness.
Apart from that, I consider myself healed from IC and live happily with my 500ml neobladder.
I have a friend whom I met at a IC coping course at a local hospital. She is going in for a neobladder tomorrow. I hope everything goes well for her.
Have you thought about having a sleep study? I was having a severe sleep problem and had a sleep study done --- what I found is that I have severe sleep apnea --- when I had the test done, it recorded an average of 74 incidents per hour. I now have a bipap machine (similar to cpap) and last night I averaged 3.5 incidents per hour --- and I no longer go to sleep trying to watch favorite TV shows. It really has helped with my fatigue.
By the way --- thank you for the update --- I'm so glad you're doing well.
Donna
Stay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool
Thanks Donna, but the problem is not sleep but that I need to empty the neobladder once at night. I used an alarm clock at 3:00am for almost two years, but recently I find that I wake up when I have to go. Which is very nice as it feels more natural and not so «forced» as with the alarm.
Male (born 1970) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015 after many years of pain. Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization). Treatment: Successful neobladder surgery on Dec 7, 2018.
Well. It turns out that «the fatigue problem» is not going away. I am currently on 50% sick leave and I’m going through a series of tests for autonomic dysfunction. So far they have not found anything. I expect to end up with the diagnosis «ME/CFS» which I assume means they will have excluded everything they can test for.
I am constantly tired. My system stresses very easily and I experience a lot of panic attacks for no apparent reason (although I do worry a lot about my future). I have days where I am severly depressed. My doctor is referring me to a psychologist to get some mental help.
I do go for short walks of about 30 minutes every day, that is about all I can manage. I work as much as I’m able to. The rest of the day I basically lie on my bed.
So life is quite rough now. And it doesn’t help with the pandemic, my entire city is closed down and there is literally nothing to do out of the house.
I spent so may years fighting IC. There is not much more fighting spirit left in me, I’m afraid.
But the good news is that the neobladder is working great.
Male (born 1970) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015 after many years of pain. Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization). Treatment: Successful neobladder surgery on Dec 7, 2018.
Sorry to hear that tormod. Good luck with everything. I"m still fighting, taking gabapentin. I get more manageable days sometimes, but still lots of bad days and still have pain on best days.
I would think higher doses of gabapentin would help more but I don't want to cause I work fulltime and don't want to become unable to work. Someday I will get removal and get the bag. I'm not doing that for the forseeable future though.
Well. It turns out that «the fatigue problem» is not going away. I am currently on 50% sick leave and I’m going through a series of tests for autonomic dysfunction. So far they have not found anything. I expect to end up with the diagnosis «ME/CFS» which I assume means they will have excluded everything they can test for.
I am constantly tired. My system stresses very easily and I experience a lot of panic attacks for no apparent reason (although I do worry a lot about my future). I have days where I am severly depressed. My doctor is referring me to a psychologist to get some mental help.
I do go for short walks of about 30 minutes every day, that is about all I can manage. I work as much as I’m able to. The rest of the day I basically lie on my bed.
So life is quite rough now. And it doesn’t help with the pandemic, my entire city is closed down and there is literally nothing to do out of the house.
I spent so may years fighting IC. There is not much more fighting spirit left in me, I’m afraid.
But the good news is that the neobladder is working great.
I'm so sorry you're still having problems. I'm glad you will be seeing a psychologist to help you deal with your new life.
Donna
Stay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool
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