One year ago today

[momto3]

I woke up with what I thought was my first UTI in ten years. After 2 rounds of antibiotics and several gallons of cranberry juice, I was diagnosed with IC. I was put on elmiron right away and then added elavil (since dropped) and atarax shortly after. I had several rounds of instillations too. I was miserable and scared. My anxiety shot up, I couldn't eat or sleep.

After a few months, I started feeling better. It was very gradual. I started realizing I wasn't thinking about IC so much and I was having more good days. I started eating more foods.

Today, I very rarely have symptoms. I can eat and drink pretty much whatever I want but I do stay away from the most acidic foods. But I still have them occasionally. Sometimes pasta and butter or olive oil won't do and I'll put a little tomato sauce on. I sometimes feel good for so long that I think maybe the doctor was wrong and I don't really have IC. But then I'll have a flair. It is usually short lived though.

I flair or feel uncomfortable after sex. I've also had 2 real UTI's in the past 6 months. I take D-Mannose and I love it. I think it really helps. When I start to feel like I might be getting a UTI or on the day after sex, I take it several times. It really seems to help and my bladder feels better.

I also feel better when I drink mostly Fiji water. I can drink other brands but Fiji works best for me.

I just got back from a girls trip to Vegas. I really believe my trip last year was what set off my IC- too many vodka cranberries. This year, I didn't flair at all. Ate and drank moderately.

I just wanted to give hope to newly diagnosed people. A year ago I was absolutely miserable and now I'm back to my normal life.

[Linda May]

i am so happy for you, hopefully they will find a cure and we all will be happy to no more disease.

[amy09]

Thank you so much for writing this post! I like coming on here but sometimes I just get overwhelmed and scared reading all the problems people are having and how much they're suffering. It makes my depression and anxiety worse. But reading your post gave me a lot of hope. I had the same thing.. thought I had a UTI (or probably actually did since I tested positive for bacteria) but the antibiotics just didn't make the symptoms better. Over the past several weeks it's been slowly getting better. I've been following the diet and taking Ditropan which I think has helped. I will see the uro again next month to see if I can start some other meds. I'm glad you're feeling much better!

[Deirdre]

THANK YOU. I am in a cycle of fear and hopelessness right now. Not sure how I will cope. Your post helped.

[cmclien]

So would you say it was the elmiron that eventually really helped you?

Also tell me about D-mannose. I bought some but am unsure if I should take it daily or what. I usually take an antibiotic after sex but was hoping to try this instead.

Thanks!

[Deirdre]

Cindi- I would definitely try the d-mannose after sex. My doc told me that they developed dmannose at the Mayo clinic before they used antibiotics. (I think I got that right) Most UTI's are caused by e-coli and the e-coli actually attaches to the D-Mannose and takes it out of your system. I take it every day as a preventative because I do feel that this whole nightmare started with a UTI

[wagamama]

It's funny - I was diagnosed about a year ago myself, and I was thinking about writing a similar post. I'm afraid to jinx myself by calling myself a "success story," but I feel pretty happy about the progress I've made.

We are all so different, and so I won't speculate on what made me better. I think it's pretty much the combination of diet, Elmiron and Elavil, but I've also been doing acupuncture and self-help stuff, and I think it all helps. There are many paths to getting better with IC.

If I could go back in time a year and tell myself what I know now, it would be this:

Your life isn't over or ruined. It will be different, but chances are that you will improve with treatment and get a lot of your "old" life back.

Improvement will be gradual and will take longer than you like, so as everyone else counsels, patience is a real asset with IC.

You'll probably develop some healthier habits - reading labels, avoiding unnecessary garbage in your food, meditating for stress instead of using wine, etc. - that will help you both in the short and long term.

You will find out who your "real" friends are - the ones who look up the IC diet on their own before you come over for dinner are golden, the ones who complain, "Can't you eat anything?" not so much.

I'm back to my "old" self again in most ways - yes I quit the wine club, but I can go for runs and wear my skinny jeans again, two things that I had to quit when I first got IC that really got me depressed. If you are reading this and your looking for a reason to hope - well, you've got another one!

[Capey]

So lurvly to read a nice positive posting that makes you smile. You are so right in your advice, patience, one day at a time and never losing hope.
I passed on all medication, and decided to go with diet and herbs only (although I know that herbs are another form of medication) I stuck only with marshmallow root tea, licourice root tea and the diet diet diet.
Last night after 8 months of normal life I actaully treated myself to an Amaretto - just about 50ml of it, took most of the night to finished and washed down with copious mugs of Redbush tea....so far today still feeling great.
I sat last night and celebrated with my friend who in the space of one year has a. Got cancer, b. had a mastectomy, c, been made redundant, and d. lost her son in Afganistan in a bomb blast......she was actaully celebrating being half way through chemo by sitting outdoors and tanning her head.
When you look at things like that you realise, life is for living, every day is a gift, and honestly when things get too bad Ijust remind myself....well I could be so much worse off.

[Engtch29]

Thank you!

I'm in need of constant hope!

[Christine222]

I love hearing stories like this. I keep reading posts from people who get on here for a month or so and then they never post again and I often wonder is it because they are just so much better or is it they are so much worse. I am hoping they just got better and don't need the support any more. I have had my symptoms for a month now and I do feel like they are slowly getting better. I have been taking Cystoprotek for a week now as a preventitive because even though I have not been officially diagnosed there is not much else it could be. All started with my 1st uti or what I thought was a uti, test was neg for nitrate (bacteria), and the symptoms just never went away after a 5 day round of Cipro. I am hoping that I caught this early and get my symptoms under control. I am 43 and have never had any bladder issues before nor any other medical problem. It's weird how it just hits some people!

[Franny]

Do not despair

It does get better...you find your own way by experimenting.....reading....doing everything you can to put one foot in front of the other everyday until your own success story starts to form. It is a puzzle and it may take a while but you can solve it.

[ICNDonna]

When you've been reading these forums for a long time, you'll see posts from people who used to come here, have been doing well for a long time, then have a flare and return for support.

Yes, as Franny says, it almost always does get better.

Donna

[Little Sunshine]

momto3, I really enjoyed reading your success story and hope to have one of my own someday. I am really interested in knowing more about the D-Mannose that you mentioned. I have been terrified to have intercourse...so any advice is welcome. Is this an OTC drug or an antibiotic? I am so happy to hear that you are doing well. I am wondering if I will ever be able to put this all behind me and move on. I have so much fear and uncertainty right now. Thanks for sharing your story.

[cmclien]

Dosage?

Cindi- I would definitely try the d-mannose after sex. My doc told me that they developed dmannose at the Mayo clinic before they used antibiotics. (I think I got that right) Most UTI's are caused by e-coli and the e-coli actually attaches to the D-Mannose and takes it out of your system. I take it every day as a preventative because I do feel that this whole nightmare started with a UTI

Hi again,
How many do you take a day maintenance wise?
I've been trying one before sex, one after, one at bedtime but not sure if thats enough. The directions for getting rid of a uti are to take 2 or 3 pills 5 times a day but that would be alot different I would think the preventative.

[Deirdre]

Hi again,
How many do you take a day maintenance wise?
I've been trying one before sex, one after, one at bedtime but not sure if thats enough. The directions for getting rid of a uti are to take 2 or 3 pills 5 times a day but that would be alot different I would think the preventative.

Hi- my primary doc told me to take it every day and after sex as a preventative. i have been taking it 2x a day. (not after sex- I wish!- right now I am too afraid!) It is just a form of sugar so as far as I know, it is fine to take more often. I thought I might have had an actual UTI on Thursday/Fri so I took it every few hours. Culture isn't back yet so I don't know if it was but i feel great today.