New here and have questions

[Tjones75]

I am new to this whole IC thing. Gyno-urololgist thinks I may have IC. When I read thru everything here, I fit into a lot of what's being said. I am in a long flare( for me) 20 days. Usually I get a flare after an UTI. No UTI this time. I have not been doing caffeine, alcohol, soda for year now. Just found out from doctor about list of other triggers. Questions are for those taking Desert Harvest aloe vera and marshmallow root tea, baking soda water and all other supplements...are you doing those everyday as a precautionary or just when you are in flare up? Also, typically how long do you usually flare. I have never been this long. I am starting to freak. I have mostly the full bladder feeling and the feeling of a very sensitive pelvic area and burning with urination that comes and goes. Any suggestions on alternatives that worked for those symptoms for you would be welcomed. Thanks for listening 😊

[anabelle]

I tried all kinds of supplements and could never really tell if any of them were helping. I took them just the same until I had fulguration and hydrodistension back in December. I've been doing well since and liberalized my diet. I am still on a migraine diet though and it overlaps a lot with the IC diet. The only supplement I'm still taking for my bladder is Glucosamine/Chondroitin. And I'm planning on vaginal estrogen for the rest of my life.

That's just me though and it's quite possible that the supplements were helping, just not enough to compensate for the discomfort from the Hunner's lesions I had. Unfortunately seems there's no substitute for trial and error with IC.

[Tjones75]

Thank you for responding!! I have since started with my first installation.....not sure what to think. I think it made my urgency/ frequency worse for at least 48 hours. I am going on 7 weeks now. I am sticking to diet, taking DH aloe vera and bladder builder. I am wondering if cytoprotek might be a better fit. I basically have frequency/ urgency issues. I am in the battle right now and know there is a remission on the other side. I just gotta do the work, to figure myself out. Whatever you ask for in prayer, you have to say/ know you have already received it. I know a work is being done in me. Thanks for any advice 😘

[ICNDonna]

Thank you for responding!! I have since started with my first installation.....not sure what to think. I think it made my urgency/ frequency worse for at least 48 hours. I am going on 7 weeks now. I am sticking to diet, taking DH aloe vera and bladder builder. I am wondering if cytoprotek might be a better fit. I basically have frequency/ urgency issues. I am in the battle right now and know there is a remission on the other side. I just gotta do the work, to figure myself out. Whatever you ask for in prayer, you have to say/ know you have already received it. I know a work is being done in me. Thanks for any advice 😘

One thing that can be helpful is keeping a diary for a few weeks, noting time of day, everything that goes in your mouth, urinary frequency (and about how much), activities, even what you're wearing, and pain levels. You can just use a note pad or even plain paper.

Warm hugs,
Donna

[Tjones75]

Thank you, Donna! I actually have been keeping a food and supplements diary for about 3 weeks. I haven't kept a clothing journal though. I have made note in my journal of more painful days and looked back to see if anything could have caused it. Question for you....is there a gum that is IC ok for the most part?

[ICNDonna]

Unfortunately, I haven't seen many posts about gum. If you search the forums for "chewing gum" you'll find some posts. I do have one suggestion, which is to use caution if you try any of the sugar free brands --- I've read that most contain sugar alcohol, which can be problem for some people.

Donna

[Chris Schultz]

I don't know anything about instillations and supplements (I seem to have troubles with supplements), but as to the long flare...my longest flare was when I first got diagnosed and drastically changed my diet. I couldn't understand why improving my diet from an IC standpoint would result in slight pain every day for weeks when that hadn't ever happened before. The doctor suggested stress, so I really backed off on my obsessing and focused on the worst culprits. And my daily pain subsided. Everyone is different of course, but stress is one of my big triggers...like eating a plateful of spicy hot wings and washing it down with a tequila sunrise. So not stressing over diet as long as I am staying away from the big offenders I've found is just as important as the diet itself for me. The drastic diet was good to kind of reset my body, especially from constant hidden triggers like soy and spices and fruit juice and vinegar. I still stay away from those plus others I've identified, but I needed not to stress about diet on a daily basis. I hope that makes sense. I stay away from lots of triggers mentioned above along with others, and keep the IC diet from this site on my phone. When I flare I eat only bladder comforting things. But day to day I don't keep a food diary anymore unless I have a flare I can't explain. It was the key to breaking the cycle on that long flare. Hope you find what helps you.

[Tjones75]

Thank you! I do obsess over the diet and tracking. I am hyper focused on the problem and trying to figure it all out. Plus lack of sleep at night from urinating and not being able to turn brain off. Thank you for your response. I do understand what you mean. Thanks

[ICNDonna]

I have to agree that stress can be a huge problem --- with any physical problem. One thing that helped me when I first started my IC diet was to plan meals for a week at a time. Somehow just knowing what's for dinner all week helped me avoid stress. I still think of my diet when I shop for groceries so I have what I need when it's time to cook dinner, but I don't plan detailed menus any more. I've been living with my IC diet since about 1977 so it's not hard any more.

Donna