Re. New to IC. Feeling Discouraged - please help

[kablois]

Thanks for the replies to my earlier post which has disappeared (probably because I was too explicit about how desperate I am - sorry did not see this as a prob, just being honest) Anyway just wanted to thank Sandy Christine and Briza for replying. Yeh... time, patience and more patience i guess... it's just SO hard to live in-between and be a good Mum.
Hope you're all feeling OK today.
kathie

[SandyRN]

There is hope for remission. There are a lot of medications that do help, Elmiron being one of them. It can take months before Elmiron to kick in though, but if it works for you after that time, then it's a great drug. To get pyridium, you might go to drugstore.com and see if you can get it there and get it shipped to you overseas. It's called Azo standard or just plain old pyridium for the generic name. If they don't have it there then there are other sites here in the US that do and can ship it to you. It really is a big help.

Hormones play a BIG part in IC and that seems apparent because you mentioned earlier that your period made you feel worse. That happens to many of us. Also, I have kids too and sometimes it's hard to be a mom and be in pain, but you can't give up because your kids depend on you. Pain or no pain, you are their mom and you have to continue to fight to find a treatment that helps you. We can do what we can on this site to help you find something to make you feel better. Do you live in France or England? I was confused about where you lived. I would follow the guidelines in the Brit and US sites concerning IC. I have no idea what the french sites say, but I know that the US and British sites are very similar in treatment plans and guidelines.

Read this site and ask questions....keep following the diet and stay away from soda, coffee, caffeine, citrus, and spicy foods to name a few.

Check out the ICN shop here on this website, there are a lot of things there that can help you to feel better as well as foods, and drinks that are usually IC safe.

I hope you are able to find a doctor that can help you out as well...in the meantime hopefully we can help you out.

[Briza]

You're welcome. :)Stick around and there is always someone here to offer support, as you can see, this is a very active board. Believe me when I say most all of us have felt terrified at times...especially when you first read those words "no cure." But that doesn't mean that you are always going to feel as bad as you do right now.

Another member here, Berkshire Road, I know has traveled a lot to Paris and she speaks French as well as English. You might try sending her a private message to see if she knows how IC is handled there and what medicines are available over the counter in France that could help you right now til you see a doctor. On occasion I have gotten some relief with plain old Tylenol (acetominophen) for my bladder pain when out of my prescribed pain meds. I know that Pyridium is not allowed in some countries, even though it is sold over the counter here under the brand names AZO Standard and Uristat. There are other similar prescription meds that help with bladder pain, spasms, and burning...one I believe is Urelle and another Urised.

The diet is so important for most of us, like Sandy said, and I'll add just a couple other things that are big triggers for a lot of people in case you haven't had a chance to look at the diet yet...vinegar and alcohol.

Hang in there!:angel:

[kablois]

Thanks for your words of encouragement. I am living in Paris but I'm British. No drug with the active ingredient "phenazo... something or other" found in Pyridium, re-azo, urised etc exists here unfortunately but I didnt know you could order it online - Thanks for that info - I'll try. Can I ask a couple of questions please: Does Ibufrofen or similar anti-inflammatory med irritate the bladder or give some relief to any of you? (I think it irritates me). Don't have tylenol here just paracetamol which I tried but really does nothing, doesn't even help with the headache I've got from all the crying! We have something her called di-antalvic which is strong but made me terribly sick once so I'mwary... Also about diet. I've been really careful and haven't touched a drink, a piece of fruit or a cup of coffee for 2 months, but the one thing I miss the most is my cup of tea (ceylon or kenya - ordinary black tea) and have tried naturally caffeine-free rooibos (red bush) tea instead. I can't work out if it's bad or not - does anyone know if it's acidic? What about goat's cheese? ANy good? Thanks a lot
Kathie

[Briza]

I am able to drink black tea, but I drink decaf now. And it's iced tea over here in Texas :), so watered down. It doesn't cause me any pain but can increase my frequency, but it did that even before I had IC. It would for most anyone, we drink it like water here.
Aged and smoked cheeses are supposed to be not good for some people and the milder non-aged ones seem to be more easily tolerated.
The diet is very very individual. It takes a lot of trial and error to figure it out but once you find your trigger foods you'll find that it's not as restrictive as it seems at first. If you've been following that strictly that you haven't had any fruit at all for 2 months, you could try adding one fruit at a time back in and see if it causes your symptoms to increase ...blueberries and pears are supposed to be ok, and a lot of people can tolerate apples.
I hate to say this but I think I once looked on that website and Pyridium DID require an Rx, even though it's sold OTC here. I don't know if doing a search on that site or another for Uristat or Azo Standard rather than Pyridium might bring up something that doesn't require an Rx. Maybe.
Yes, many people with IC are not able to tolerate ibuprofen, although I can.

[ICNDonna]

Rooiboos tea is usually okay. Several people have posted that they drink it with no problem.

There's a drug glossary at http://www.ic-network.org/glossary/ that will tell you what the various medications are called in different countries. I did notice that Elmiron is available in France under a different name.

Donna

[kablois]

Thank you for all this info. The drugs list is particularly helpful and I'm glad Rooiboos tea seems OK too. Unfortunately I cannot get a pharmacy to deliver Pyridium / Azo-standard abroad, but I have some Ditropan from the doc - has anyone tried that?
I'm actually feeling a little better today - my period is nearly at an end and my IC symptoms feel more bearable now. I'm waiting to see the Uro next week. I'm sure I'll be back with more questions soon. Hope you're all having an easy IC day.
Kathie

[SandyRN]

My favorite tea is Celestial Seasonings Madagascar Red Vanilla Rooibos . I put a little sugar and half n half in it. It's really good and doesn't bother my bladder at all! It's great on a cold winter day!