Starting a new chapter with IC

[beachnut]

Hi all, over the past couple of weeks I have been reading your letters and you have helped me a great deal. I was diagnosed 2 weeks ago with IC. I had a cystoscopy and it was my symptoms of painful and frequent urination, nocturia, and pelvic pain that led the urologist to the cystoscopy. Which to my chagrin they do with only a local anesthetic. He filled the bladder full of water, had to pee but not so painful and then he did the K-test. Potassium. YIKES! I was writhing in pain and I guess he got his answer.
So, I though turning 40 was going to be painful, I guess IC came along before that hurdle. He (the doctor) has given me no meds and nothing for pain ,the past two weeks and I have been quite uncomfortable to say the least. Appearantly there is a fairly new treatment ,not sure if it is only in Canada, but they have had great success so far. I will start this treatment in the next couple of weeks. It is called Uracyst, made by Stellar international Inc.
This is described as an effective treatment for IC, Uracyst is sterile sodium chondroitin sulphate. Which is a substance naturally found in the body and found in the GAG layer in the bladder. Uracyst claims to replenish the GAG layer in IC patients. Thus protecting the bladder wall.
The treatment will be cathed right into the bladder and must be held in for approx 15-30 minutes. The beginning stages will be once a week for 6 weeks and then once a month for several months. I am sooooooo hopeful and they have told me that many who are having this done have be thrilled with the results.
I am so glad that it is not a drug. I have been feeling so rotten for so long I need to believe that hope is in sight. I have changed my diet and have learned alot from all of you. I appreciate the support you all give to the many people who write in.
I am a very strong person, but no one can really understand what it's like to change your whole life because you have to pee all of the time except someone who is also living with it. Also the intense pain.
Not to mention its sounds like I am going to have to give up chocolate, what could be worse than that??????? I am tired of being sick and telling my kids that I can't play right now because I am in so much pain.
So wish me luck and I will keep you posted, since this "wonder drug" could save us all from alot of discomfort.
Has anyone out there heard of this treatment????

[traceann]

Hello and :welcome: to the gang!!! I am glad you found us!!

And do keep us posted on your treatments, we always like to hear what others are doing and may be having success with!! :smile tee

I do know that the oral supplements that work as a bladder coating/rebuilding agent have the chondroitin in them, so hearing of it (or a variation of the form of it) being instilled in the bladder is very interesting!:)

I do hope it works for you, as IC can be a miserable thing to deal with, lol - I think that's an understatement, :lmao: :lmao:

Once again, welcome to the gang, look forward to seeing you around the boards and keep us posted on how it's going!!!

Hugs,
Tracey

[beachnut]

Hi Tracy

Thanks for the quick reply. Could you tell me what is okay to drink?? I have been on water and milk for the past week and I am sick of it. No juice, not pop, no coffee, no tea......What else does that leave me with. I used to drink tea and coffee several times a day. I'm getting pretty cranky.

Any ideas????

[traceann]

Well, I think that is the one food item that drives us all crazy, lol. There are a quite a few herbal teas that are ok with most, you just have to watch out for rose hips, they can bother some. I do fine with most of Celestial Seasonings herb teas and like them iced as well : Bluberry, Mint teas, Rooibos tea (red tea, goes by Madagascar Red in Celestials line), chamomile. Although, when I was newly diagnosed, chamomile did NOT like me one bit! Oh that was a nightmare, when I asked about it here, I was told that it's a relative to ragweed - so if you have allergies to be careful with it. But now, I am fine with it.

Trader Joe's has a great blueberry juice, just pure juice - yummy! A bit expensive, but when you are desperate it doesn't matter too much, lmao!!!! I also started drinking Postum (the decaf version) in place of my coffee. Now, if I thought of it as a relplacement and expected it to taste just like coffee - I would have been disappointed, lol. But, enjoying it for itself is great, I fix it with my cream and sugar and it's a great wake-up warm beverage. And I was even surprised to find out that hot water and honey was fabulous! I scoffed at that at first - I thought "yuck!", but my hubby told me his grandma used to drink it all the time (she didn't have IC, lol) and liked it. Sooooo, I tried it and it was pretty darn good!

As time went on and I got to where my bladder was tolerating things better (I also used Prelief religously, it's great), I moved on to Starbucks Breakfast Blend coffee, I used whole bean and ground it as needed. My bladder would allow me a cup or two on the weekends with no troubles. But, I still took my Prelief before I drank it, as insurance, lol. I also used creamer and sugar, and the CoffeeMate has an acid-reducer in it, I figured I'd take ever little bit of help I could get!! LMAO!!!!

Hope this helps a bit, if I think of anything else, I'll let you know!!!!!!

[Sarojini]

I can drink a lot of herbal teas... it's weird; some can handle it and some not. I hate to say it, but it is a "trial and error" process. Every now and then, try a new food, and wait... see if it bothers your bladder. If so, note it down and don't eat/drink it. If not, well... a new food/beverage is in your diet :)

I'm sorry you were diagnosed and had such a bad experience with the diagnostic K+ test! Hope you're beginning to recover, and I hope the Uracyst helps you.

[SharonA]

:welcome:

Pear Juice is usually okay and is very good. That is if you like pears. I buy the baby food kind. I figure if baby can drink pear juice, so can I. Yummy over crushed ice. Make sure you read labels before you buy. Look for added ingredients. Usually baby food Pear Juice is just pear juice...nothing added.

Jen and Tracey mentioned Prelief. Are you familuar with it? You can find out about it here on the ICN. Look to your left, scroll up and find Our Sponsors. Then click on the Prelief Link. I am not sure if you can get it in Canada. I think you can order it from the ICN and have it shipped. Shipping might be expensive, though. Check it out.

:) :) :)

[beachnut]

Hi Everyone,
Thanks for the replies. I am really suffering today. How do you know if you have eaten or drank something that flares you up?. Do you get an immediate reaction? I am so new to this I really need some help. I guess I'm going to get to know my body pretty well in the months to come. Seems like alot of IC people use prelief, I'll have to see if they sell it in Canada. We only live 10min from the US border so I can always go over and get some. Does it require a prescription?

Thanks again for the support
Sandy

[SharonA]

No...It is Over the Counter (OTC). You can find it in the antiacid section.

Yes, you will get to know more about your Urinary Tract then you ever wanted to know. :shake: You might even end up knowing more than your doctor. Sad, but true.

The amount of time for a reaction varies. Like most things about IC, there is not one definitive answer.

Once you have given your bladder a chance to rest and heal a bit by staying on the IC Diet for a few weeks, you can begin adding things back into your diet...one at a time. Sorry to say that you are the only one who can tell what will bother you or not. You have to try for yourself. If you are not drinking anything other than milk or water right now then; when you think your have given it enough time, drink something on the usually ok list. If you flare, then you know that thing is a trigger. Wait a few days and then try something else. Continue doing this until you have a list of No-Nos and OKs. Then go back and try the No-Nos, again. If they still cause a flare, then you know that is something you just can live without. Do the same with the so-so list. If you are an especially adventurous, rick taking type person, you can try the same method with the usually not okay list.

It's not fun, but it is the only way to find out what you can or cannot have.

:) :) :)

[Lisa_S]

I just found a new hot drink I like. Rice milk in the microwave with spices (I used a little nutmeg and cardamom... cinnamon gives me problems). Rice milk is already sweet, so no need to add sugar.

[traceann]

Sharon's right that's the best and really only way to figure this stuff out, it's slow going, but super worth it! You will likely find you can eat a lot more things than you thought you could, that's why it's a good thing to do. You might be avoiding something that you could be eating if you don't experiment, lol. And keep good records, I used my pain/voiding diary to record everything, what I ate, when I ate it, what meds I'd taken (rx or otherwise), where I was in my cycle, constipated or not, if hubby and I had sex, etc... I kept track of everything - oh yeah, and when I had to hit the bathroom too, lmao!!!

[ads]

I wish you the best with the new treatment. Does your doctor have the study results for the treatment? Perhaps he could give you a copy of it or it might be posted on internet.

Diet wasn't a factor for me, but I did do an extremely strict IC diet for three months to make sure. No cheating because I wanted to ge well so bad. I wish diet would have done the job for me though, although, the IC diet isn't a walk in the park...

This is great place for IC support, but I am sorry you have to be here. Many people go into to remission and the board is a temp. place for them. I hope that will become your situation.

Best wishes,
ads

[Zygala87]

Hello Beachnut. IC hit me like a truck almost overnight. I went into a deep depression as I felt my whole life was changed forever. It's been 3 months now and I am doing so VERY much better. Three Doctors told me they would never do that painful potassium test but yours is over now so no sense talking about that. Who told you the Uracyst being cathed into your bladder has been a great sucess? I don't have doubts about that but wonder where you are getting your information. I found prelief in a few drug stores. Not all of them carry it so look into every drug store around you. Rite Aid has it but I do not know if they are in Canada. I bought something called ROMA in a health food store which is the most like coffee than anything I ever tried. I take Prelief and drink a half cup of coffee in the morning to wake me. I switch to Roma after that. I had Hydrodistention while knock out! It took me from a 10 in pain down to a two. I'm on Elmirom and a strict IC diet. I feel so very much better right now but I also know I could go into a flare at any time. My Urologist told me he will do another Hydro if that happens. (in the hospital while out) This is a wonderful site to educate you and give support. I am very sorry you are dealing with IC but there is much hope. Also it is your body and your pain. Don't be afraid to ask your Doctor any and all questions you have. The Iterstitial Cystitis Survival Guide by Robert Moldwin M.D. is a wonderful book to buy. Keep us informed as we all care about you. Hugs Ziggy

[ICNDonna]

Prelief is not available in Canada. Hopefully one day it will be.

The potassium sensitivity test is being done by many urologists to diagnose IC. It doesn't require hospitalization and anesthesia and the pain usually only lasts a few minutes. Hydrodistention does require anesthesia and a recovery period, but the advantage is that in some patients it eases symptoms for up to several months.

I hope you feel better very soon.

Warm healing thoughts,
Donna

[beachnut]

Wow I can't get over how supportive you all are. I feel very lucky to have found you. I will plan to follow the IC diet , as bland as it is. Last night after days of excruciating pain I ate red licorice and , it was like, BAM! Pain was gone.....weird. I woke up in pain today though. COuld red licorice be the wonder drug. HMMMMM doubtful. I have no idea why that happened, but it was an enjoyable evening, without pain.
The uracyst is a new drug and I have agreed to be involved in the trials, although there are people who have had these treatments for quite a while now. The study is from Queen's University in Kingston, Ont. I'm sure you would be able to find info on it. I did. Here's hoping it works.

You are all just amazing. Thanks again, it has helped my feelings of desperation alot.
Sandy