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Successful treatment course for Men
I would like to share this course of successful self treatment with men. I came down with IC around 4-5 years ago. Like most men I was wrongly diagnose with prostatis for one year before I was diagnose properly with IC and had to go through a few urologist.
As I am an engineer and I did not believe that I could not beat this disease, I started to read a lot on this disease.
All the literature pointed to three main factors,one that it was an autoimmune disease of some type, two the bladder GAG layer was defective, and three urine continued to destroy for bladder wall.
I must stated that I am not a doctor and cannot be responsible for any treatment that you try on yourself.
I started out having to urinate every 30 minutes and was in extreme pain most of the time. Also my bladder had shrunk a lot.
I start taking Elmiron on the second year and notice a bit of improvement after six months but not a significant amount. I attributed that to the fact the the Elmiron had to go through my whole body until it got to the bladder.
Then I tried Cystitat directly self-instillations using foley latex catheters. Cystitat also had some initial improvements as it was a GAG replenisher that was placed directly into my bladder. However this treatment was ridiculously expensive and since my IC was quite extreme at that stage, it was costing me a thousand dollars a month. I live in Canada and even then this was not covered by insurance. Also, Cystitat results tended to wane with time.
I looked into other instillable GAG replenishers and found a company (Stellar International, http://www.stellarint.com ) that producted a GAG replenisher called Uracyst-S in Canada and decided to give that a try. It was substantial cheaper, a naturally occuring substance in the bladder, and it actually worked better. In fact many of my urologist IC patients who tried Cystistat eventually switched to Uracyst-S as it was both cheaper and more effective.
During all these trials I also was taking Prelief and watching my diet. Once the Uracyst-S started working a bit, I was still urinating every 1-1.5 hours. I also started a new job in which I had to be in an office. I again did some more research and bought external condom catheters and a urine leg catch bag so that I could go to work and urine at all times.
I found that this urine catch bag actually helped my bladder recover as it allowed me to urine anytime relieving it of irritates and giving it time to recover.
As my bladder had further shrunk now partially due to the constant urination, when I was at home and whenever I felt better, I did bladder training and measured my urine retention. I slowly doubled my bladder size back to almost normal.
By now my IC had improved dramatically but I was still not statisfied as I did not wanted to use a urine catch bag and want to further reduce my dependence of self instillations of Uracyst-S as it was still costing me a few hundred dollars a month.
I got married in the course of those few years (I thank my wife for coping with my IC), and since I snored, I went for a sleep apnea test.
It turned out I had extreme sleep apnea, I was put on a PAP (positive air pressure machine) for sleeping and BINGO! my IC then improved dramtically. I had been continually treating the GAG later but ignored my immune system. The PAP machine allowed me to sleep more and better and get more oxygen thus improving my immune system.
I now continue to take Elmiron two to three times a day for maintenance and do self-instillations whenever I have a IC flare. I still have IC and will likely have it until they find the cause and cure. I no longer use a urine catch bag. I also now experiment with mixing the powder from inside an Elmiron pill with my Uracyst-S and finds that this works pretty well (even through both the Uracyst-S company and my Urologist advise against it). They stated that this method has not been tested they did not know what the absorption rate into blood this method caused. However I have been monitoring my liver and things seem find. I also eat almost anything I want when I do not have flares. I still get flares once every 4-8 months but instill for a few weeks and then it stops.
In conclusions, a combination of Elmiron (both orally and instilled in a mixture of sterile sodium chloride), self instillations of Uracyst-S, my PAP breathing machine to improve sleeping and breathing, diet watching when I have flares, Prelief, using a urine catch bag with external condom catheter to relieve my bladder in extreme flares, and bladder training help control my IC.
This is not a cure but a treatment that has kepted my IC under control for the last two years.
I hope this post help some other people.
Hank
As I am an engineer and I did not believe that I could not beat this disease, I started to read a lot on this disease.
All the literature pointed to three main factors,one that it was an autoimmune disease of some type, two the bladder GAG layer was defective, and three urine continued to destroy for bladder wall.
I must stated that I am not a doctor and cannot be responsible for any treatment that you try on yourself.
I started out having to urinate every 30 minutes and was in extreme pain most of the time. Also my bladder had shrunk a lot.
I start taking Elmiron on the second year and notice a bit of improvement after six months but not a significant amount. I attributed that to the fact the the Elmiron had to go through my whole body until it got to the bladder.
Then I tried Cystitat directly self-instillations using foley latex catheters. Cystitat also had some initial improvements as it was a GAG replenisher that was placed directly into my bladder. However this treatment was ridiculously expensive and since my IC was quite extreme at that stage, it was costing me a thousand dollars a month. I live in Canada and even then this was not covered by insurance. Also, Cystitat results tended to wane with time.
I looked into other instillable GAG replenishers and found a company (Stellar International, http://www.stellarint.com ) that producted a GAG replenisher called Uracyst-S in Canada and decided to give that a try. It was substantial cheaper, a naturally occuring substance in the bladder, and it actually worked better. In fact many of my urologist IC patients who tried Cystistat eventually switched to Uracyst-S as it was both cheaper and more effective.
During all these trials I also was taking Prelief and watching my diet. Once the Uracyst-S started working a bit, I was still urinating every 1-1.5 hours. I also started a new job in which I had to be in an office. I again did some more research and bought external condom catheters and a urine leg catch bag so that I could go to work and urine at all times.
I found that this urine catch bag actually helped my bladder recover as it allowed me to urine anytime relieving it of irritates and giving it time to recover.
As my bladder had further shrunk now partially due to the constant urination, when I was at home and whenever I felt better, I did bladder training and measured my urine retention. I slowly doubled my bladder size back to almost normal.
By now my IC had improved dramatically but I was still not statisfied as I did not wanted to use a urine catch bag and want to further reduce my dependence of self instillations of Uracyst-S as it was still costing me a few hundred dollars a month.
I got married in the course of those few years (I thank my wife for coping with my IC), and since I snored, I went for a sleep apnea test.
It turned out I had extreme sleep apnea, I was put on a PAP (positive air pressure machine) for sleeping and BINGO! my IC then improved dramtically. I had been continually treating the GAG later but ignored my immune system. The PAP machine allowed me to sleep more and better and get more oxygen thus improving my immune system.
I now continue to take Elmiron two to three times a day for maintenance and do self-instillations whenever I have a IC flare. I still have IC and will likely have it until they find the cause and cure. I no longer use a urine catch bag. I also now experiment with mixing the powder from inside an Elmiron pill with my Uracyst-S and finds that this works pretty well (even through both the Uracyst-S company and my Urologist advise against it). They stated that this method has not been tested they did not know what the absorption rate into blood this method caused. However I have been monitoring my liver and things seem find. I also eat almost anything I want when I do not have flares. I still get flares once every 4-8 months but instill for a few weeks and then it stops.
In conclusions, a combination of Elmiron (both orally and instilled in a mixture of sterile sodium chloride), self instillations of Uracyst-S, my PAP breathing machine to improve sleeping and breathing, diet watching when I have flares, Prelief, using a urine catch bag with external condom catheter to relieve my bladder in extreme flares, and bladder training help control my IC.
This is not a cure but a treatment that has kepted my IC under control for the last two years.
I hope this post help some other people.
Hank
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