Diagnosed a few months ago... trying to stay positive

[sarahew]

Hi Everyone my name is Sarah. I was diagnosed with IC about 2 months ago. After about 7 years, thousands of dollars (I have no insurance), and years of mental and physical frustration I saw an emergency clinic doctor for what i thought was ANOTHER UTI. She went over my symptoms, performed a urinary culture and sent me home with a weeks worth of anti-biotics (as expected). Those didn't help and I was back within the week. She then told me that she didn't think I had a UTI and told me about Intersitial Cystitis. She then gave me enough anti-biotics to kill ANYTHING that could be plaguing me bacterialy, some oxybutinin, told me to keep taking peridium (which at this point I already had a life-time supply stocked up at home), and gave me a list of foods I can and cannot eat. The general diet didn't really bother me too much despite the fact that lemonade, diet coke and tomatoes were all staples in my diet and actually helped A LOT, but one part really got to me. Wine is something that is almost always acidic. Wine has and always will be my passion, I've been studying wine for about 2 years and have always had a dream of owning my own vineyard. I work for a wine distributing company, I am always either at work, or at home reading up on, tasting, and appreciating wine. Knowing that I couldn't continue on the path that I was going DEVASTATED me. The peridium would help a little bit, but for the most part all I can do is spit (when tasting wine) :-) . Loving something like that and having it taken away from you (despite all the constant pain and unsympathetic people you know and work with) I think is my biggest loss in this disease. What do I do now? About once a month I enjoy a late harvest Riesling or Gewurztraminer (HIGHLY reccomended for wine loving IC patients due to its low acid content), I continue to try to control my diet although I've gained about 10 pounds, and I try to stay positive. My family and my boyfriend have been MORE than supportive, and now I have you guys. Thank you for reading and take care!!
Sarah:smile tee

[sarahew]

I lied... the general diet bothered me a lot....... sorry! :bunny:

ALSO, does anyone else get INTENSE back/stomach/kidney pain from taking peridium? I get it occasionally just wondering if anyone else got it as well?

[stef000]

I am so sorry you have this IC thing too...
it can get to you sometimes for sure....
we all try and get things to help us through, like with me i cuddle my cats when i am flaring and actually my cute lil aussie knows before i do when i flare...
its really weird but the other night he was on my lower abdomen and then later on i was feeling flarey....just realized that now....:rolleyes:
anyway.....
with me i was all ready on a bland diet since my stomach is really bad too...
but i did love tomatoes and now of course can't have them and also the only fruit i can eat is a couple kinds of berries....:bonk:
i hope your bladder starts settling out...:pray::pray:
i do use oxybutinin to lessen the spasms my bladder makes when i flare and i take some muscle relaxants as well....
i don't know pyridium since i have never had it....
there are a lot of people on it on here though so they will put in some advice...not sure if you can take it long term though....
i hope things settle out :pray::pray:
:grouphug::grouphug:

[ICNDonna]

If you scroll to the top of this page and click on "Diet" you will find information on following an IC diet.

What kinds of tests were done to determine that you have IC?

Usually professional wine tasters do spit out the wine after tasting it; otherwise, they would be drunk tasters (one of them told me if he swallowed all he tasted he'd be on the floor).

It's not a good idea to take pyridium for a long time. You might want to ask your doctor about other options.

I hope you feel better soon.

Donna

[leelee88]

Hello and :welcome:

I know when I was first Dx it was a VERY hard adjustment!! But you do get somewhat use to it.. I miss my Tomatoes!! I loved the sauces I would make with fresh tomatoes out of my mom and sis's garden..But I did have to give them up..

As far as Peridium I cannot take it. It also makes my stomach and back hurt and makes me nausea.. My URO has given me Ulmar-T or Urelle it makes your pee blue instead of orange and seems to work better for me.. There is also Prosed-D that people here on the boards that say works very well also.. So I would ask your URO about something like this.. Good luck and if you need anything just ask..

[SharonA]

I have often wondered if we get a craving for say...maybe orange juice or lemonade...(yes, that is what I can't have any longer)...would it help to take a bit from a glass of it, swish it about in the mouth and then spit it out??? I remember going on wine tasting tours and doing that with the grape. :hmm: Maybe I will try it one day if I get brave enough. :)

Anyway... :welcome: to the ICN.

[JenAZ07]

Welcome!!! :welcome:


The diet is killer!! I live in the Southwest USA and LOVE Mexican food and salsa....which with tomatoes and jalapenos is certainly not IC friendly! Even my IC dr sympathized with me about the IC diet and how restrictive it is. He told me that when I cheat....as he knew I would....to take Prelief and he was right...it helps so much!! So I would suggest getting some Prelief and carrying it with you at all times. I also use Urelle....for me it works better than Prydium...which also made me really sick to my stomach. My uro told me I could take Urelle for 6 days straight, but then I had to give myself a few days break from it. He basically said...6 days on and 6 days off. Although he was pretty conservative, so you may be able to take it more often than that.

For me, after I was officially diagnosed (I started the IC diet about 4 months before I was officially diagnosed) I started to feel much better. I think the stress of not knowing what was wrong made the IC worse. Now I know what I can and can't have (somewhat) and choosing the right foods comes more natural...I don't have to think about it as much. Although I still make mistakes, I learn from them and make sure to add the troublemaker food to my internal no/no list.

Oh....and I can drink most red wines.......but can only have one small glass with food and I have to take Prelief with it. Anything more, I flare. Hopefully you will learn a way to be able to enjoy your wine and still pursue your passion.

Sorry you had to find us, but glad you made it here. IC stinks...there is no better way to put it. I hope you start feeling better soon. :pray: