Diet Binge, ugh!!! need to try treatment

[abbyw]

I went into remission 3 months after being diagnosed last year, was fine for about 9 months, now have had symptoms now for almost 3 months again , last time I popped out of it on my own, loosely followed the diet and had one bladder instillation, I guess it was just the basic saline diagnostic one but I seemed to get better shortly after. Dr. did that same scope saline thing 3 weeks ago now but I am still having to stick to the diet. I can be mostly pain free with strict adherence to the usually okay diet. Well it is been a really rough week, decided the heck with it yesterday, drank two beers and ate some other bad stuff, pain today not horrible but I'm to the point I really need to try another treatment. I am super sensitive to drugs so taking that oral Elmiron scares me, I know my hair will fall out :(. I probably don't have the best Dr. , not sure he knows what he is doing. Probably should look for another Dr. as well, I'm in the Dallas area. Thinking I want to try another instill , not sure what I should start with, maybe the one with the least amount of side effects????? Kind of really down about all this right now, I love to cook for my family and this is really taking the joy out of it when I can't eat what they r having ......

[Zygala87]

Abbyw no you do not know for sure your hair will fall out taking Elmiron. Many people who are on Elmiron never lose their hair. Since you know the diet very much helps you why not stick to it? Many Doctors are not familiar with IC. The good ones do research on it and try to help or send you to some they feel can help. An open honest conversation with your Doctor might be a positive move. IC is a mean condition. To have to cook for your family and forgo much of what you cook it terrible hard. I am so sorry. No one wants to go through the pain we do have and if the diet helps you as it does me, it is worth the bother. Maybe giving the diet a major try for a few weeks before you decide to go for the instillation might help you. I hope so. Hugs, Ziggy

[ICNDonna]

Ziggy is right --- only a very tiny percentage of IC patients experience hair loss on elmiron. And the diet is full time thing for most people with IC --- those trigger foods will cause a flare for me even on my best days.

Donna

[Goldfinch]

I totally understand where you are with food. My first few months on a strict diet I felt incredibly moody and sorry for myself. I would look at my husband's bowl of oranges and grapefruits and burst into tears. I decided to cook only what I could eat; I figured I'd rather feel sorry for my family than for me!

We still buy lemons and tomatoes, I just don't eat them. My husband and daughter (when she's around) are perfectly capable of adding vinegar to their own salads, or cutting up a tomato, or drizzling tabasco on their mac n cheese. And nothing is stopping them from making a lovely red sauce for their spaghetti. It took me a while, but I've managed to find some great new recipes for dishes that are IC friendly and that don't send my cholesterol into orbit. Give yourself a break, you deserve it. And maybe find a new uro for a second opinion. Sometimes that can really change your whole perspective. It took me three uros before I found one I wanted to stick with.

[enots1558]

I can totally empathize with you. I, too, am very sensitive to drugs and fear the whole hair falling out thing. I have had horrible reactions to medications such as liver failure caused to an allergic reaction to Tegretol (thankfully it reversed but was life threatening for a long time), pancreatitis due to side effect from Neurontin, and an anaphylactic reaction to methadone, and this just recently (My lips and tongue swelled to the point I could not eat, swallow or drink and lost four pains in a matter of days). Pain doctor just put me on Lyrica last week and the side effects were such after three doses could not stand them and had to quit taking. The Lyrica caused deep muscle response similar to a panic attack in the muscles and caused me not to sleep for two straight nights and also ringing in the ears. I am one of the patients doc's hate trying to find meds for. So, I can completely understand your fear. However, I have been successfully taking Elmiron for months and it does seem to help at least with that horrible constant burning I had been having and perhaps frequency too but not sure. So good luck with it. Also, I have begun the IC diet, have not got it perfectly down pat as I am still in the learning process of acceptable foods and what personally flares me. I also have to adhere to a strict diabetic diet so again, I can certainly empathize with you. We all are in this together and post us anytime you need a little extra strength to get through your challenges.

[glassd18]

When I follow my diet I feel much better. I did instills, and they aggravated my urethra, and caused me flares. I am very sensitive to meds, and that includes my bladder mostly. You should try the Elmiron. If your hair does fall (which it probably won't) you can just stop it. You have nothing to lose and much to possibly gain!!! Instills are something I tried further down the road when I was having trouble with other things I already tried. Good luck!!!