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Still doing very well on my Bion. I do have some pain at night, do still need to use the Percocet quite often in order to get to sleep, but I am getting better I think, slowly. I am comfortable almost all the time now during the day, and my urgency/frequency is way down, probably a bit less than half of what it was.
In fact I just recently filled out my first post-Bion-activation 5-day voiding diary, and I remember what my entries were in my pre-Bion voiding diary, and I can tell you that I'm voiding roughly only half as often or less as I was before. Right now, I'm voiding between about 9-11 times in 24 hours. Before, I would void anywhere from about 22 times per 24 hours (my best days) to over 40 times in 24 hours (my bad days). Since normal voiding is about 7-8 per day for most people, I am delighted to think that I am "almost" normal in my voiding habits now.
My husband especially noticed the difference on a recent long car trip we took. We are moving to Ohio from the Northern Virginia area in June, and recently drove there to look for place to live.
Normally, on car trips, either I have to take a Percocet to shut my bladder up (and even then it only works just so well, it doesn't make me like a normal person exactly) or I have to hit every single rest stop (every 15-30 minutes).
This time, my husband was amazed and shocked at how long I was going between stops. He said, "I have to go to the bathroom more often than you do, now!" And it was true that at one point, he had to go and I didn't feel any need to go. So that was kind of amazing. My husband thinks I'm pretty much cured right now, because of this device. I wouldn't go that far, but I know that my voiding is very normal now. The only thing is, I do still have some nocturia (going at night) that is maybe more than average. That's where those extra couple of voids per day come in, I think. I void like a normal person now during the day, but at night when I should be sleeping I still have to go to the bathroom 2-4 times. But that's not so bad, I mean it used to be I'd have to go 9-10 times on my good nights and much more than that on my bad nights. I can live with 2-4.
Oh, and I noticed my bladder can hold a lot more now. Twice as much, or pretty close to it. Before, my biggest void was one or two voids where I managed to hold 4 ounces (generally after waking up after taking Percocet). Now, I had quite a few voids that were 7 or 7 1/2 ounces, and most of my average voids were 3 3/4 ounces to 4 1/2 ounces, whereas before the normal was maybe 1 1/2 ounces.
The only part that isn't perfect just yet is that my bladder still gets irritated around my periods, if I eat or drink the wrong thing or take the wrong medicines, and at night. So I do still count on Percocet to help me during those times, for sleeping at night. But I no longer need it during the day, and I find that often, half a tablet of Percocet works just fine. So I can see that the Bion has helped a good bit with the irritability factor/pain factor, although it has not eliminated it entirely 100% yet. (Actually they told me, not to expect it to help any with the pain, as it's for urgency/frequency rather than pain, but of course we were all hoping against hope it would help some with the pain, and I really do believe it has helped me some. And maybe it will help me more as time goes by.)
I was thinking today, that if all IC patients have pretty much the same experience as I have (I know, I know, I'm just one patient, don't know how others will respond) then this device could be a really great tool for helping with IC, especially since the surgery isn't as bad as for the Interstim and since there are fewer side effects.
I wonder if I should have put this post under success stories? I hesitate though because this is an experimental device, I'm really happy so far but I don't know what will happen down the road. So I'm still kind of just...taking it one day at a time and trying to let you guys know how it's going so that in case you get a chance to try a Bion, there will be information here from people who have undergone the trial. I hope more people will write and give lots of details so it will help everyone if they have a decision to make about the Bion.
Thanks for letting me give you guys an update on how the Bion is working. I am now approximately 45 days out from when the Bion was first activated.
Blessings, Lori
In fact I just recently filled out my first post-Bion-activation 5-day voiding diary, and I remember what my entries were in my pre-Bion voiding diary, and I can tell you that I'm voiding roughly only half as often or less as I was before. Right now, I'm voiding between about 9-11 times in 24 hours. Before, I would void anywhere from about 22 times per 24 hours (my best days) to over 40 times in 24 hours (my bad days). Since normal voiding is about 7-8 per day for most people, I am delighted to think that I am "almost" normal in my voiding habits now.
My husband especially noticed the difference on a recent long car trip we took. We are moving to Ohio from the Northern Virginia area in June, and recently drove there to look for place to live.
Normally, on car trips, either I have to take a Percocet to shut my bladder up (and even then it only works just so well, it doesn't make me like a normal person exactly) or I have to hit every single rest stop (every 15-30 minutes).
This time, my husband was amazed and shocked at how long I was going between stops. He said, "I have to go to the bathroom more often than you do, now!" And it was true that at one point, he had to go and I didn't feel any need to go. So that was kind of amazing. My husband thinks I'm pretty much cured right now, because of this device. I wouldn't go that far, but I know that my voiding is very normal now. The only thing is, I do still have some nocturia (going at night) that is maybe more than average. That's where those extra couple of voids per day come in, I think. I void like a normal person now during the day, but at night when I should be sleeping I still have to go to the bathroom 2-4 times. But that's not so bad, I mean it used to be I'd have to go 9-10 times on my good nights and much more than that on my bad nights. I can live with 2-4.
Oh, and I noticed my bladder can hold a lot more now. Twice as much, or pretty close to it. Before, my biggest void was one or two voids where I managed to hold 4 ounces (generally after waking up after taking Percocet). Now, I had quite a few voids that were 7 or 7 1/2 ounces, and most of my average voids were 3 3/4 ounces to 4 1/2 ounces, whereas before the normal was maybe 1 1/2 ounces.
The only part that isn't perfect just yet is that my bladder still gets irritated around my periods, if I eat or drink the wrong thing or take the wrong medicines, and at night. So I do still count on Percocet to help me during those times, for sleeping at night. But I no longer need it during the day, and I find that often, half a tablet of Percocet works just fine. So I can see that the Bion has helped a good bit with the irritability factor/pain factor, although it has not eliminated it entirely 100% yet. (Actually they told me, not to expect it to help any with the pain, as it's for urgency/frequency rather than pain, but of course we were all hoping against hope it would help some with the pain, and I really do believe it has helped me some. And maybe it will help me more as time goes by.)
I was thinking today, that if all IC patients have pretty much the same experience as I have (I know, I know, I'm just one patient, don't know how others will respond) then this device could be a really great tool for helping with IC, especially since the surgery isn't as bad as for the Interstim and since there are fewer side effects.
I wonder if I should have put this post under success stories? I hesitate though because this is an experimental device, I'm really happy so far but I don't know what will happen down the road. So I'm still kind of just...taking it one day at a time and trying to let you guys know how it's going so that in case you get a chance to try a Bion, there will be information here from people who have undergone the trial. I hope more people will write and give lots of details so it will help everyone if they have a decision to make about the Bion.
Thanks for letting me give you guys an update on how the Bion is working. I am now approximately 45 days out from when the Bion was first activated.
Blessings, Lori
Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Lori, I know this great house in Ohio that is going to be available and is already adapted to IC...lots of potties and all with comfy padded seats 
Seriously, though, welcome to Ohio!
Um, I hate to be ignorant, but I dont know what a Bion is? Is it similar to the interstim?
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