Cara03
10-09-2010, 04:20 PM
I've been feeling really good lately, I don't want to call it "remission", especially since I am on medication, but I think it's as close as I'm going to get. Whenever I was feeling my worst, I would come here and constantly check for any nugget of information that I could get in regard to getting rid of these annoying symptoms, so I will share what I did in hopes that it might give some others some ideas, and so you know that it is definitely possible to feel good!
Everything started last Feb., I had the CONSTANT urge to urinate that was so obnoxious. I could hold it for a couple of hours but it was so frustrating and it was all I could think about. Sometimes I would have some dull pain, nothing too serious typically, but enough to notice, but the urgency was the worst symptom by far.
I made an appointment with a great uro./gyn. and he immediately put me on hydroxizine 25 mg. once a day and I also started pelvic floor physical therapy. I didn't notice much difference from the hydrox. so the next time I went in I asked if he could add a low dose of elavil to the regimen, and I left my appointment with an Rx for 25mg. I noticed some improvement (probably a mix of the elavil and PT), and he said I could up my dose of elavil to 50mg. I tried that for a week and it made me extremely moody so I decided to go back down to 25 mg. A month later, I went into the office and told him that I had about a 25% improvement in symptoms but was not where I wanted to be, especially since I was going on a big 16 day backpacking trip the following month. He told me I should consider a hydro. for a quick but not permanent fix. He also had me start on Elmiron 3X's daily so that could start working and hopefully provide more long-term results.
I was scheduled to come in for the hydro. the next week and I was so nervous because I had never had anything done under anesthesia before. But honestly, it was nothing at all- everything went smoothly, and yes it burned while I pee'd and I had some spasms for a few days, but the following week I felt pretty good. Finally, I felt nearly normal- my trip went great and I started thinking that maybe this was all a fluke and nothing was wrong! But alas, after about a month the symptoms came back.
I was so frustrated that I felt the urge again, much like when I was first diagnosed, but I tried to stay positive. I really enjoy running and wanted to start training again for some distance races, but I stopped as a result of my diagnosis and because it was uncomfortable. But I decided to get into it again because I figured I felt bad either way so I might as well feel like I have to pee while I'm running and getting a workout rather than feeling like I have to pee but just sitting on the couch.
Slowly, over the course of about 2 months, I noticed the urgency lessening more and more. I was able to run longer and longer and my symptoms decreased substantially. Now I lead a completely normal life, I no longer worry about going out or searching for bathrooms, or being consumed by stress and worry. Most days I go to the restroom 5-6 times (as opposed to about 10-12 before), and sometimes even less. I almost never go at night anymore, and after I urinate I don't have the immediate urge that I used to get. One of the best things is that I can eat most anything now. I do have minor "flares" when I eat too much chocolate or tomato sauce (which I know I shouold avoid but sometimes I can't help it!). But when my symptoms do flare up they only last a day or two at most and they are far less severe.
So I think it has been a combination of things, but I'm pretty certain that the Elmiron is doing it's job, and the Elavil and Hydrox., are a good compliment. I don't know how much PT did in the end-I went for about 4-5 months once a week, but I'm sure it didn't hurt. But most of all, I think exercise is a must. It may not be possible to go out and run for miles, but taking it slow, like I did, and then building up has helped me immensely. I am able to run 10-12 miles at a time, and yes, sometimes I have to pee but I ignore it and eventually the sensation diminishes or goes away completely. I truly think that pushing through those urges and not letting the IC symptoms take over my life are what is making me feel good again. These things may not work for everyone, and I realize there are varying levels of severity with IC, but I hope my sharing this can give some of you something to think about while your building the best treatment regimen for you! When I was first diagnosed with this, I was quite depressed and kept thinking that I would never feel good again, but it does get better for a lot of, if not most people. Hang in there!
Wow, sorry this is so long!
Everything started last Feb., I had the CONSTANT urge to urinate that was so obnoxious. I could hold it for a couple of hours but it was so frustrating and it was all I could think about. Sometimes I would have some dull pain, nothing too serious typically, but enough to notice, but the urgency was the worst symptom by far.
I made an appointment with a great uro./gyn. and he immediately put me on hydroxizine 25 mg. once a day and I also started pelvic floor physical therapy. I didn't notice much difference from the hydrox. so the next time I went in I asked if he could add a low dose of elavil to the regimen, and I left my appointment with an Rx for 25mg. I noticed some improvement (probably a mix of the elavil and PT), and he said I could up my dose of elavil to 50mg. I tried that for a week and it made me extremely moody so I decided to go back down to 25 mg. A month later, I went into the office and told him that I had about a 25% improvement in symptoms but was not where I wanted to be, especially since I was going on a big 16 day backpacking trip the following month. He told me I should consider a hydro. for a quick but not permanent fix. He also had me start on Elmiron 3X's daily so that could start working and hopefully provide more long-term results.
I was scheduled to come in for the hydro. the next week and I was so nervous because I had never had anything done under anesthesia before. But honestly, it was nothing at all- everything went smoothly, and yes it burned while I pee'd and I had some spasms for a few days, but the following week I felt pretty good. Finally, I felt nearly normal- my trip went great and I started thinking that maybe this was all a fluke and nothing was wrong! But alas, after about a month the symptoms came back.
I was so frustrated that I felt the urge again, much like when I was first diagnosed, but I tried to stay positive. I really enjoy running and wanted to start training again for some distance races, but I stopped as a result of my diagnosis and because it was uncomfortable. But I decided to get into it again because I figured I felt bad either way so I might as well feel like I have to pee while I'm running and getting a workout rather than feeling like I have to pee but just sitting on the couch.
Slowly, over the course of about 2 months, I noticed the urgency lessening more and more. I was able to run longer and longer and my symptoms decreased substantially. Now I lead a completely normal life, I no longer worry about going out or searching for bathrooms, or being consumed by stress and worry. Most days I go to the restroom 5-6 times (as opposed to about 10-12 before), and sometimes even less. I almost never go at night anymore, and after I urinate I don't have the immediate urge that I used to get. One of the best things is that I can eat most anything now. I do have minor "flares" when I eat too much chocolate or tomato sauce (which I know I shouold avoid but sometimes I can't help it!). But when my symptoms do flare up they only last a day or two at most and they are far less severe.
So I think it has been a combination of things, but I'm pretty certain that the Elmiron is doing it's job, and the Elavil and Hydrox., are a good compliment. I don't know how much PT did in the end-I went for about 4-5 months once a week, but I'm sure it didn't hurt. But most of all, I think exercise is a must. It may not be possible to go out and run for miles, but taking it slow, like I did, and then building up has helped me immensely. I am able to run 10-12 miles at a time, and yes, sometimes I have to pee but I ignore it and eventually the sensation diminishes or goes away completely. I truly think that pushing through those urges and not letting the IC symptoms take over my life are what is making me feel good again. These things may not work for everyone, and I realize there are varying levels of severity with IC, but I hope my sharing this can give some of you something to think about while your building the best treatment regimen for you! When I was first diagnosed with this, I was quite depressed and kept thinking that I would never feel good again, but it does get better for a lot of, if not most people. Hang in there!
Wow, sorry this is so long!