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Successful treatment course for Men

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  • mayray518
    replied
    I have to stop myself when I think of IC as basically a women's disease when I hear about how you men suffer just as we do. Hope they come up with some new treatments for you as well. You are all brave!!

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  • hankcanada
    replied
    Dean,

    I used an external condom catheter which is worn outside the penis attached to a leg catch bag. You can wear that while working and walking. The side effects are that you need to select the best condom catheter otherwise they can come off. Also condom catheters can cause a rash if it is worn too much as the penile skin does not get air.

    I found that a self adhesive non latex condom was best for me. I noticed that you take Tylenol 3, however I believe that has caffeine in it which does not help the IC. I take Tylenol 4 which does not have caffeine(and half the dosage).

    Finally, in Canada, if you are diagnose with extreme sleep apnea after going to a sleep clinic, insurance pays for the PAP machine. I do not know how it works in the US.

    Hope this helps.

    Good luck Dean,

    Cheers,
    Hank

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  • ICNDonna
    replied
    Dean, Sleep is a problem for a lot of ICers.

    I noticed that you are taking multivitamins and also calcium --- these can be irritants for some ICers --- you might try stopping them for a few days to see if it helps.

    Sending healing thoughts,
    Donna

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  • deanvinson
    replied
    Hank. I cannot thank you enough for posting. It all makes sense what you said. Now that I have read your post I think my IC is similiar to yours. I feel that if my immune system was stronger and I could wear a catheter I could heal myself. Unfortunatly at the moment I cant. I am now 27 and own lawn maintenance company and work hard every day. I hope after March I can slow down dramatically and start trying some methods of treatment like the ones you have.
    My body does not heel itself very well either. This IC thing is domino-ing on me. I cant sleep because of IC. Since I cant sleep I cannot rebuild my body tissue like my bladder. I am around dust all day cutting lawns which makes me not be able to breath well anyway. I think I am allergic to dust. Its just a constant battle. I cant quit my job. I play lottery atleast twice a week but have not won yet. If I win I will retire early and buy us all PAP's.
    The best I ever felt since my first IC symptoms was last year when I was diagnosed. I had biopsies of my bladder done and had to wear a catheter for 2 days. I slept the entire first day (best sleep I have had in about 7 years)and felt awesome the second day. I was the happiest man a live. I didnt want to take the catheter out. I knew the pain would come back and it did very soon.
    I know my body doesnt heal well because I fell off my lawn trailer and cut my leg once. My leg didnt want to heal for like a year. It would heal, then it would start to scab again, back and forth. It was scaring me but my leg eventually healed.
    The only thing that has helped me so far is Tylenol 3 and Elavil. Between the two they keep me pretty doped up. Im suprised I havnt cut off my arm with the chainsaw. I really dont like the Elavil because after a few days of being on it it makes me very sluggish. I cant think clearly and feel very lazy. I am usually very energetic.
    Another thing that makes me feel my body is not getting oxygen is that I have nightime erections that last for hours. I wake in the middle of the night exhausted from the erection. I get up and urinate and will feel better for about and hour or two. Not to sound funny but I think my penis is needing oxygen. I was told once that the reason men have erections at night is becasue the penis is breathing. Im not trying to be funny here. When I feel the worst these erections happen at night Usually this happens about 3-4 nights a week. T3 and the Elavil has helped with this problem. My doc prescribed me proscar for this. It helps a little but I still have the problem.
    All these problems and I wake up more exhausted than when I came in from work the day before. Same thing everyday. Wake up exhausted to go to work. OK, I will quite complaining. I know everybody here has pain. It just makes me feel better.
    I also take take Algonot plus, MSM oral solution from Jacobs Lab, coral calcium, and some multi-vitamins. I feel all these things will help with time but if I dont sleep I am doomed. Hank, once again I appreciate the post. I will try some of your techniques soon, and will post my results here. If anyone else reading this has had similiar problems and want to talk let me know
    Thanks, Dean

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  • ICNDonna
    replied
    Thank you for sharing your success story. There are lots of people with IC who have similar experiences to share. For me, it's hydrodistention and DMSO that keeps me feeling very close to normal most of the time.

    Warm personal regards,
    Donna

    Leave a comment:


  • vm
    replied
    Very, very interesting about the PAP machine. It is funny how problems with other systems in our bodies can affect the IC. I found that after I went on an SSRI for anxiety and depression that my IC improved greatly.

    Thank you for sharing your story.

    Leave a comment:


  • hankcanada
    started a topic Successful treatment course for Men

    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
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