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NewLife
12-15-2008, 06:09 AM
Hi, everyone! I want to let you know that improvement and even remission is possible! My symptoms started in November, 2007, and in August, 2008, I was dignosed with IC and Hunner's ulcers. I was going to the bathroom approximately 15-20 times per day, and about every 15 min. when I had flares. The diagnosis was devastating, but it was also a wake-up call.

Immediately after I was diagnosed, I started making dramatic lifestyle changes. First, I started a detailed diary where I wrote down everything I ate, my symptoms, exercise, medications, sleep patterns and mood. The diary very quickly revealed that I had a major trigger--fermented foods. I cut anything fermented or containing bacteria out of my diet. This included alcohol, especially wine, mushrooms, yogurt, cheese, nuts and seeds, undercooked foods and fruits and berries (these ferment in the stomach). I also stopped eating out and started cooking at home, using only organic and natural foods. I adopted the IC diet with additional restrictions--high animal protein (which I thought would help heal my ulcers), low yeast and low histamine to prevent allergic reactions.

Second, I started taking supplements. I took a Solaray yeast cleanse product for eight weeks. That helped a lot. I also started taking 1000 mg of flax oil to reduce inflammation, 400 mg vit. E to prevent oxidization of Omega-3s in my system (that is said to cause heart disease), 250 mg magnesium (helps the body produce hyaluronic acid, which is a component in the bladder lining), and one tablespoon of seabuckthorn oil once daily on an empty stomach. The seabuckthorn oil is extremely potent for healing wounds and has more omega-3, -6, and -7 than flax oils, as well as a host of other micronutrients. I also took Cystoprotek when I had flares. Later on (in October), I found a multivitamin that I could take (a large, cheap bottle from Costco--don't remember the brand) and started feeling even better. The multivitamin contains 400 mg of folic acid per serving, and folic acid is considered to be beneficial for bacterial vaginosis. I noticed improvement in vaginal issues I had, such as discharge and odor, and also in my IC.

I tried a lot of supplements that did not work or made my symptoms worse, such as Wobenzyme and passionflower extract. The diary really helped identify what worked and what didn't. I also took Elmiron for six weeks, starting immediately after I was diagnosed. I did an expensive blood allergy test, which was not helpful. However, finding the things that worked for me was worth trying all the things that did not work.

Third, I started exercising, doing cardio at least twice a week. I still do step and weight traning. I noticed that my symptoms would disappear for a while after step classes.

Fourth, and this was a very important point, I started changing my mindset. I had a full-time job and a very stressful side job, which I stopped doing for two months and then gradually scaled back into. Now, I balance both but watch the number of hours I work. I also stopped contact with people who were causing me stress and reconnected with people who were positive. I did a lot of soul-searching, reevaluated my priorities in life, faced my fears (total disability from IC) and worked through them. My family rearranged our financial affairs to ensure that we had a backup plan in case I couldn't work because of IC. This gave me peace of mind, which was very important. I intend to maintain the fall-back plan (in my case, it is disability insurance) indefinitely, even if my symptoms don't return. Also, I started using positive affirmations for my IC--you can read about them in Louise Hay's book. And, finally, as a result of all the soul-searching, I realized that there had been things that I really wanted to pursue as a hobby, so I started pursuing them, which resulting in very satisfying creative experiences.

As a result of all this, I became a much different person. Stress does not seem to get to me as much. In fact, given recent developments in the economy and the associated stress, I am surprised at how calm I am. My life is more wholesome and balanced. And, best of all, my symptoms have been gone for two months. Now, I use the bathroom 6-8 times a day. The discomfort is gone, and now I don't feel my bladder at all. The only residual from IC is that I still get up once per night, but I think that is more psychological than IC-related. I don't need melatonin to help me sleep anymore.

My diet is now pretty varied, except there is still no room for highly fermented foods (e.g., wine and brie cheese). I try to focus on foods that have a lot of bioflavonoids to prevent inflammation. I still eat natural and organic, and had alcohol only once (high-quality Gray Goose vodka).

I realize that my remission may be temporary, but I try to enjoy life to the fullest in the meantime.

I hope my story helps and I wish everyone great success! I know I got better because I believed that I would, and that was the most important component in my recovery. I firmly believe that our bodies reflect our thoughts and fears.

leelee88
12-15-2008, 06:20 AM
:woohoo: I love hearing stories like this!! thanks for sharing this!!

april ryan
12-15-2008, 06:50 AM
New Life, you are a hell of a woman!

What you did means have a very pragmatic and positive mind, great ability of research, knowledge and excellent data collection and interpretation of your symptoms ability.

You did really well!!

About the magnesium, I assume that it didn't give you any flares?

SharonA
12-15-2008, 06:51 AM
I am so glad to hear that you are feeling better. I truly hope it continues. :)

NewLife
12-15-2008, 07:28 AM
Thanks everyone!

April, no, magnesium did not seem to give me flares.

rosezclark
12-15-2008, 08:31 AM
That is so wonderful to hear!
Thank you for sharing. This helps so much!

Lexie
12-15-2008, 09:33 AM
Awesome!!!

glassd18
12-15-2008, 09:45 AM
Congrats Newlife, I hope, and pray you have a lasting remission. I agree with you about attitude, and stress.

maryc
12-20-2008, 07:44 AM
Hi i am so happy for you and thanks for leaving such a positive message, its really encouraging! i have been suffering since August of this year and like you I undertook major life and diet changes. For me stress and needless worry are a major trigger of my symptoms. I am following the IC diet rigidly and doing a yeast free diet. Please tell me why you eliminated nuts and seeds though because i eat lots of pumpkin seeds and sugar free peanut butter and Im slightly concerned now... I didnt even think about undercooked foods and possible bacteria contents, its so obvious now that you mention it. I love a rare steak! Boo!

Thanks!! Mary :)

NewLife
12-22-2008, 03:37 AM
Hi Mary,
I eliminated nuts and seeds based on my symptoms--they irritated my bladder.

bjcov
01-01-2009, 07:21 AM
Wow what an awesome post. I am amazed at how much research you did! I am really uplifted about your holistic measures. I am writing them all down and even if it doesn't help with flare, they are at least good for you in general. You have saved me a ton of research that I know I would've never found. So you were taking the Seabuckthorn AND the Flaxseed oil? And I have vaginal "not so fresh" smell, so hopefully the Folic acid may help me too. Good job! I also have a problem with the IC diet. I am not a cook and have a problem figuring out what to fix that won't hurt me, I'm a pretty picky eater and LOVE all the food we can't have. Spaghetti, Pizza etc. No creativity at all. Any suggestions anyone?

asIshallbe
01-01-2009, 07:45 AM
First of all, that is wonderful that you are in remission!!! I am so happy for you and I do not even know you, but we all deserve that wonderful feeling. I am going to take this new year and try to stay as stress free as possible. I am going to take up a couple of hobbies, one being jewelry making, the other being walking around my neighborhood as I have not walked in quite some time. I am going to stick with the Cystoprotek, get back on the Aloe Vera from DS, continue the Flax Seed Oil Capsules (is the liquid comparable to the capsules?), start drinking my wheatgrass every morning again, and continue with my 2 scripts which I am not willing to give up, 1 being Lyrica (love it) and the other being tofranil (it helps cut down the number of trips to the toilet). I am going to accept that I have IC, and stop fighting it, but rather working on my outlook on it and life and start healing from within my heart from this. I am going to stay positive as much as I possibly can.

I am extremely interested in the Solary yeast cleansing product. I read the ingredients and 1 of them raises a flag so I just want to make sure there are no problems with Caprylic Acid. I am assuming it was fine for you, otherwise you you not have continued it for 8 weeks.

Cheers to wonderful news and your tips for what worked for you! Stories like this make me feel like there is hope, so I refuse to ever let my mind think that there is not! :smile tee

mariais
01-01-2009, 01:44 PM
beer and wine affect me a lot, but i am ok with cheeses and other pickled stuff as long as they don't have yucky preservatives.