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breaking the cycle

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  • breaking the cycle

    My recent message was concerning my friend and his reasons for closing himself away from the world and me.... I need a little more advice.. Maybe something that he has not tried yet... Anything meds, therapy, interstim... I need your help once again......

  • #2
    Kate, Hi I responded to you yesterday.

    What is your friend doing now? There are some things that I know that I have tried. Maybe it will help him. First off there is the IC diet, I know there is a list of foods to stay away from on this site. Also the Prelief is good to. I tried Elmorin (spelling) Elvil and another antidepressant. None of those worked for me though. Also some people get relief when they have a hydrodistention done. That is done when diagnosing IC. They go in for surgery and the Uro blows up your bladder. This to painful to be done without being put to sleep. This is because usually people with IC have very small bladder capacity. When I had the hyrdo done it work for several days, I guess because my bladder was still numb, but it wore off after that. Then in September they did the trial for the interstim. I could tell as soon as they were through that is was working. I now longer had the urge to go to the bathroom all the time. They left it in for a week. After that we decided that perm. implanting of the device would be best for me. After all nothing else worked. The interstim is mostly for the urgency and frequency of the disease. I was going to the bathroom 42 times a day before the device and now it is down to 12 or less. For me it was a life saver. Take note the device is not recommend for pain. Some people have had problems with theirs and have had it removed. But one thing you will find out about this disease is that not everything will work for everyone. Just because the medicines did not work for me does not mean they will not help your friend. And the interstim may not work for him like it has me. That is why they do the trial before actually implanting the device. It's kind of like trial and error. Just have to try and see what works.

    I am so proud that I know what I have now. Because I love to inform the world what a awful and painful disease this is. And please let your friend know that no matter what now that he knows he will be able to get a handle on it. It is currently an incurable thing but you can hopefully control the symptoms.

    I have found that even though I have the interstim I still have flare up. Mainly from eating something I should not have or stress. But I feel like I have finally found some peace of dealing with it. And I have the scars on my rear to prove it.

    If you would like to email me I would be glad to help in any way I can. I know you truly are a special person wanting to help him. There are not many out there who want to do that. Understanding is the most important thing a person could give an IC'er. I know my husband is very supportive and we had alot of decisions to make before I had the interstim put in. Anyway my email address is [email protected] Take care and tell your friend about this site. There is alot of caring people on here. And most of all he knows he is not alone in dealing with disease.