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I just wanted to share what has been working for me. I sincerely hope it helps others. I was at a 4/5 on the pain scale for about two months but now I currently have next to no symptoms, just occassional twinges of discomfort usually set off my too much time in the car etc.
I was initially diagnosed with IC in 96' via a hydrodistention proceedure. I'd had moderate symptoms for about a year at that point. After the proceedure, my sypmtoms improved over the course of 6 months until I had a complete remission. I was on no meds at the time, other than wicked amounts of Ibueprophen for the pain.
My symptoms returned in Dec. 2010. This time I knew exactly what it was, and decided to try diet change, relaxation and herbal supplementation to get myself back on track. My symptoms cropped up during a period of high stress, so I think thats definately a trigger. Again, my symptoms were moderate, but being stressed out already, I was having a much harder time "dealing" with the pain and urgency than before. Plus, I didn't want to go thru the hydro again as I found it to be quite painful.
I read practically everything I could find online about natural, more homeopathic ways to deal with IC. Here's what I've been taking/doing:
Quercitin w/ Bromeline - Natural anti-histamine, available over the counter. Cheap! Helps to relax the smooth muscle tissue of the bladder.
Desert Harvest Aloe Vera - Naturaly occuring Polysaccharide (Elmiron is apparently a synthetic poly - but they have essentially the same bladder coating action). Available online - not cheap, $68/month supply. But thats not too bad.
Serrapeptase Dr's Best brand - this worked WONDERS for me!! This is a proteolytic enzyme which is a powerful anti-inflammatory. It has nearly no side effects (though it is contra-indicated for certain folks, like asthmatics). I felt dramatic results from this after just one day of use. I started taking this about 6 weeks after I'd been takding the Quercitin and Aloe, so I know it was the Serrapeptase. I did take really high doses of it (10 caps 3X daily) during the first two weeks of use, now I'm down to just 2 caps 2X daily. But I experienced no side effects and the anti-inflammatory properties really helped get my bladder pain under control. This has to be taken on an empty stomach, so that it can get into the small intestine before the capsule breaks open. If it opens in the stomach, the stomach acid will digest the enzymes, rendering them useless. Dr's Best Brand has enteric coated capsules, which helps prevent the capsule from breaking down in the stomach. A bottle is $13-$20 depending on where you purchase it, and can last anywhere from 3 days to a month depending on how much you have to take.
Prozac (only prescription I'm on) - This my urologist gave me, mainly because he knew I was getting very depressed when my sypmtoms came back. But he also said it helps to relax the bladder and dull the pain signals in the brain. I don't like being on it, but it has really helped with my depression. I'll be asking my doc to ween me off of it pretty soon to see if I still need it.
I also take Bovine Colostrum and Fish Oil daily to help boost my immunity, and marshmellow root extract, just to help keep my GI nicely coated in muccous.
Cystoprotek - I read quite a bit about this and decided I'd like to try this too as an ongoing maintenance supplement. It has Quercitin as one of the ingredients, so I would obviously stop taking that. My only issue with this product is that is has Chondroitin Sulfate, which according to the companys literature suppresses the bodies release of proteolytic enzymes. I could not get any diffinative answer from the company regarding the interation of Chondroitin Sulfate and Serrapeptase (which is a proteolytic enzyme). I need to somehow figure out if one will cancel out the other before I start taking Cystoprotek. I'm a bit irritated that the only answer I could get from the manufacturers was "ask you medical doctor". Uh, thanks? I would think they would be the best people to address that question, but for reasons of liability I assume they will not be answering my question anytime soon.
Diet Change - So I'm taking all these wonderful supplements, why detroy all that good work with a bad diet? I follow the IC diet quite strictly, though now that I'm feeling much better I'm slowly trying to add things back into my diet. I've been on the diet for 4 months now and I have to say its really not as bad as I thought it would be. After just a few weeks I stopped craving soda and chocolate. I really cut back on sugar and salt as those seemed to trigger pain for me. I mostly eat very minimally processed foods. A typical day's menu usually involved raw veggies, organic milk, raw cashews and almonds, dried dates (yum!) yogurt, organic whole wheat bread. You get the picture. I lost 15 lbs in two months because I stopped eating all that garbage (soda etc.).
Relaxation - aside from using a heating pad on my abdomen (makes it much easier to fall asleep) I also made it a point to just relax. At first I was feeling so guilty that I couldn't work the way I used to, and that I was spending so much time in bed, etc. But after reading some pain management books, I came to the conclusion that guilt can really poison a person's healing process. So, now when I need a break I take one knowing that its essential to the process of getting myself "better".
Meditation - This varies widely from person to person - anything can really be meditation whether is performing transcendental meditation, prayer, or stopping to really observe a moment of calm in your life. It helps to be thankful for those moments of less pain and moments of peace.
Gentle exercise - yoga is usually my thing, but I think daily, gentle walks are good. Swimming would probably be a good option too. Anything no/low impact (don't want to giggle that tender bladder around) is good for me, since I think mild, daily exercise boosts the immunce system and keeps the body loose and relaxed.
Chair Cushion - I fashioned myself a chair "cushion" out of folded towels. One towel for each "cheek" so to speak, with a gap between of 2". Much like the cushions that are available on this website. This makes long days at the office job a lot easier. I'll be purchasing one of the cushions form the ICN as soon as I can, since sitting on towels looks a bit goofy (but who cares right?)
Ok - well, I think thats probably the longest post on this website. Yikes! If your still reading this, kudos! I hope your sitting on a comfortable cushion.
I think I was able to get my symptoms under control so quickly (only about 3 months until I was "nearly" symptom free) because I hadn't had the symptoms for very long (only a month). I think for those who have been suffering for an extended period of time, it could take significantly longer to see solid results. Definatley give each supplement at least three months for a fair trial. And of course, please please take plenty of time to research any and all drugs/supplements that you decide to take. Everyone reacts differntly and I'm certainly no expert. I spent hours reading about my options to figure out what I thought was best for my situation.
Best wishes to everyone, I hope you find some comfort and healing.
Barbara
I was initially diagnosed with IC in 96' via a hydrodistention proceedure. I'd had moderate symptoms for about a year at that point. After the proceedure, my sypmtoms improved over the course of 6 months until I had a complete remission. I was on no meds at the time, other than wicked amounts of Ibueprophen for the pain.
My symptoms returned in Dec. 2010. This time I knew exactly what it was, and decided to try diet change, relaxation and herbal supplementation to get myself back on track. My symptoms cropped up during a period of high stress, so I think thats definately a trigger. Again, my symptoms were moderate, but being stressed out already, I was having a much harder time "dealing" with the pain and urgency than before. Plus, I didn't want to go thru the hydro again as I found it to be quite painful.
I read practically everything I could find online about natural, more homeopathic ways to deal with IC. Here's what I've been taking/doing:
Quercitin w/ Bromeline - Natural anti-histamine, available over the counter. Cheap! Helps to relax the smooth muscle tissue of the bladder.
Desert Harvest Aloe Vera - Naturaly occuring Polysaccharide (Elmiron is apparently a synthetic poly - but they have essentially the same bladder coating action). Available online - not cheap, $68/month supply. But thats not too bad.
Serrapeptase Dr's Best brand - this worked WONDERS for me!! This is a proteolytic enzyme which is a powerful anti-inflammatory. It has nearly no side effects (though it is contra-indicated for certain folks, like asthmatics). I felt dramatic results from this after just one day of use. I started taking this about 6 weeks after I'd been takding the Quercitin and Aloe, so I know it was the Serrapeptase. I did take really high doses of it (10 caps 3X daily) during the first two weeks of use, now I'm down to just 2 caps 2X daily. But I experienced no side effects and the anti-inflammatory properties really helped get my bladder pain under control. This has to be taken on an empty stomach, so that it can get into the small intestine before the capsule breaks open. If it opens in the stomach, the stomach acid will digest the enzymes, rendering them useless. Dr's Best Brand has enteric coated capsules, which helps prevent the capsule from breaking down in the stomach. A bottle is $13-$20 depending on where you purchase it, and can last anywhere from 3 days to a month depending on how much you have to take.
Prozac (only prescription I'm on) - This my urologist gave me, mainly because he knew I was getting very depressed when my sypmtoms came back. But he also said it helps to relax the bladder and dull the pain signals in the brain. I don't like being on it, but it has really helped with my depression. I'll be asking my doc to ween me off of it pretty soon to see if I still need it.
I also take Bovine Colostrum and Fish Oil daily to help boost my immunity, and marshmellow root extract, just to help keep my GI nicely coated in muccous.
Cystoprotek - I read quite a bit about this and decided I'd like to try this too as an ongoing maintenance supplement. It has Quercitin as one of the ingredients, so I would obviously stop taking that. My only issue with this product is that is has Chondroitin Sulfate, which according to the companys literature suppresses the bodies release of proteolytic enzymes. I could not get any diffinative answer from the company regarding the interation of Chondroitin Sulfate and Serrapeptase (which is a proteolytic enzyme). I need to somehow figure out if one will cancel out the other before I start taking Cystoprotek. I'm a bit irritated that the only answer I could get from the manufacturers was "ask you medical doctor". Uh, thanks? I would think they would be the best people to address that question, but for reasons of liability I assume they will not be answering my question anytime soon.
Diet Change - So I'm taking all these wonderful supplements, why detroy all that good work with a bad diet? I follow the IC diet quite strictly, though now that I'm feeling much better I'm slowly trying to add things back into my diet. I've been on the diet for 4 months now and I have to say its really not as bad as I thought it would be. After just a few weeks I stopped craving soda and chocolate. I really cut back on sugar and salt as those seemed to trigger pain for me. I mostly eat very minimally processed foods. A typical day's menu usually involved raw veggies, organic milk, raw cashews and almonds, dried dates (yum!) yogurt, organic whole wheat bread. You get the picture. I lost 15 lbs in two months because I stopped eating all that garbage (soda etc.).
Relaxation - aside from using a heating pad on my abdomen (makes it much easier to fall asleep) I also made it a point to just relax. At first I was feeling so guilty that I couldn't work the way I used to, and that I was spending so much time in bed, etc. But after reading some pain management books, I came to the conclusion that guilt can really poison a person's healing process. So, now when I need a break I take one knowing that its essential to the process of getting myself "better".
Meditation - This varies widely from person to person - anything can really be meditation whether is performing transcendental meditation, prayer, or stopping to really observe a moment of calm in your life. It helps to be thankful for those moments of less pain and moments of peace.
Gentle exercise - yoga is usually my thing, but I think daily, gentle walks are good. Swimming would probably be a good option too. Anything no/low impact (don't want to giggle that tender bladder around) is good for me, since I think mild, daily exercise boosts the immunce system and keeps the body loose and relaxed.
Chair Cushion - I fashioned myself a chair "cushion" out of folded towels. One towel for each "cheek" so to speak, with a gap between of 2". Much like the cushions that are available on this website. This makes long days at the office job a lot easier. I'll be purchasing one of the cushions form the ICN as soon as I can, since sitting on towels looks a bit goofy (but who cares right?)
Ok - well, I think thats probably the longest post on this website. Yikes! If your still reading this, kudos! I hope your sitting on a comfortable cushion.
I think I was able to get my symptoms under control so quickly (only about 3 months until I was "nearly" symptom free) because I hadn't had the symptoms for very long (only a month). I think for those who have been suffering for an extended period of time, it could take significantly longer to see solid results. Definatley give each supplement at least three months for a fair trial. And of course, please please take plenty of time to research any and all drugs/supplements that you decide to take. Everyone reacts differntly and I'm certainly no expert. I spent hours reading about my options to figure out what I thought was best for my situation.
Best wishes to everyone, I hope you find some comfort and healing.
Barbara
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