Newly diagnosed and lots of questions

[Daphniela]

I was just diagnosed two days ago. I have had serve symptoms :peeing alot, throughout the night, feeling like I have to go after voiding, cramping.

I went to my general doctor for a suspected bladder infection. He prescribed me antibiodics even though there was no sign of infection. There was however, blood and protein in my urine. The antibodics did nothing so I went back. He prescibed me stronger antibodics. This time there was only blood in my urine. Those did nothing. I went back a third time and he told me I needed to see my OB because he had no idea what was wrong with me. I couldn't get in for 2 weeks so I went to the hospital. This time there was no blood and the did a CAT scan on my kidneys and found nothing. When I finally got to my OB, I told him all this and he told me I have IC. He could not do the actual test for it since I have only medicaid. I cannot get Elmiron either since medicaid won't pay for it. I tried charities and they said it is too expensive. He prescribed me Motrin 800s and Bentyl instead. I also have Celiac Disease so I am already familiar with eating certain foods.

I have several questions. What other medication can I try? As far as cereal goes what brands are safe? What deli meat brands are safe? Can I eat any kind of candy? What about bottled water, does it matter the brand? Are all hot dogs off limits or can I have Hebrew National?

It would help me alot if I could have some brand names so I can check there gluten status all well. Thanks.

[dyno]

Hi and welcome to the ICN.:hi:

One medication that is relatively cheap that helps me and many others alot is Hydroxyzine. I can get one months supply which for me is taking up to 75mg. a day if needed for a little over $20.00 a month.

Due to allergies I can't take Elmiron so instead I am using over the counter Glucosamine/MSM that I can get at local drug stores or vitamin stores. Others use Cystoprotek which is sold right here on the ICN.

In my signature line you will see a link to the Handbook. You will find a lot of information including the IC diet which does help a lot of people too. Most of the time I try for bottle spring water. You just have to see what is available in your area. Staying as close to ph of 7 with no added minerals in your water is a big help.

Read through the diet and that should help you a lot.

Good luck and we are all here for you.

[purpletomorrow]

Over the counter supplements you can take --

• CystoProtek, which coats the bladder, lessens irritation, and lets your bladder heal itself.

http://www.icnsales.com/CYSTOPROTEK-p-1-c-100.html

• Desert Harvest Aloe Vera, which works with the CystoProtek to sooth and coat the bladder and speed healing. You can find that in the ICN store and here:

https://www.desertharvest.com/shop/i...on=show_detail

The CystoProtek and the Desert Harvest Aloe Vera work better together than separately. My IC specialist says they are both wonderful supplements for an IC bladder.

Prescriptions for urgency and frequency include

• Hydroxyzine -- an anti-histamine designed to stop the histamine assaulting the bladder

• Elmiron, which you know about already.

• Also, vaginal estrogen is important. Loss of estrogen causes PH changes in the vagina, thinning the walls and increasing the odds of a UTI.

As for your diet questions, plain oatmeal is usually safe and free from the preservatives that make an IC bladder react badly.

Deli meats and preserved meats and smoked meats and cheeses are usually irritants to the bladder. You can find more info at the IC diet link, here

http://www.ic-network.com/diet/

Sugar is not great, candy is not great, many people tolerate caramels and toffees and vanilla ice cream; chocolate is usually an irritant, so is coffee and artificial sweeteners are pure poison for most IC bladders.

I remember trying Equal a long time ago and doubling over with the spasms and pain it caused to my poor bladder. That was a long time ago and I didn't know much then.

Hot dogs have preservatives and so they are a no-no. In general, you want to eat real food, free from packaging and preservatives and preparation; things like baked chicken and steamed vegetables and home made soups without tomatoes.

Sorry for the bad news! The good news is that this is controllable for most, and diet makes a HUGE difference, which is a good thing because it's something we can control.

Good luck to you, I know it's a lot to take in at first.

[bruegelfan]

Hi there, you might want to double check on the medicaid thing. I've got got medicaid only and it covered my urodynamics, cystoscopy, hysterscopy, and everything else that went along with my diagnosis. Maybe it's different state-by-state?

[VickiB]

What other medication can I try? As far as cereal goes what brands are safe? What deli meat brands are safe? Can I eat any kind of candy? What about bottled water, does it matter the brand? Are all hot dogs off limits or can I have Hebrew National?

Laura and Jolene did a nice job of covering the relatively inexpensive meds.

From what I've found with the diet end of IC there are no absolute answers. The question is, what is safe for you to eat?, and the easiest way to find that answer is by doing an elimination diet. It takes time, but can be really, really worth it!

This diet list is a general guideline as to how well specific items are tolerated by those with IC: http://www.ic-network.com/diet/dietcheatsheet.html However, I have to say that I have found there are things under "eat & enjoy" which cause me to flare horribly, while several items listed as worth trying or approach with caution are perfectly fine for me.

So, in my case the answers to your food questions would be:
I don't eat cereal so have no experience there.

I do eat a lot of hard butterscotch candy, white chocolate, and werther's original candies with no problems.

Deli meats have always been a problem for me. I think it's in the artificial smoke/nitrite/nitrate additives, but am not sure on that. I approach all deli meats with caution especially because whatever it is, Prelief doesn't do a thing for me to help with it!

I've never had a problem with bottled water. I always buy the least expensive brand on the shelf making sure it contains nothing else besides pure spring water. (no flavor, additives, etc.)

Hot dogs fall into the same category as deli meats with me. I notice in the ingredients Hebrew National lists soy, as well as several other things I cannot pronounce. My guess is they may be fine for one person but not the next so I would approach with caution.

I hope I didn't just muddy the water for you! IC & food seems to be an individual thing with no guarantees. But once you know what causes you problems, it becomes fairly easily managed.

Vicki

[Daphniela]

Hi there, you might want to double check on the medicaid thing. I've got got medicaid only and it covered my urodynamics, cystoscopy, hysterscopy, and everything else that went along with my diagnosis. Maybe it's different state-by-state?
Here in Michigan, you are required to pick an HMO to go along with medicaid. None of the HMOs cover it. I asked my doctor if I should switch to another and he said it wouldn't matter. I am wondering though, if since I have this condition, if I would be eligible for straight medicaid. I don't even know if then it would be covered. Michigan has a fallen economy and medicaid cut a lot of benefits, including dental, chiropratic, and vision. I never used the chiroprator, but I am pretty blind so I guess I am stuck with my old glasses for a few more years,.

[Goldfinch]

I know what a misery it is dealing w/insurance coverage, but don't let it drop. Elmiron is the ONLY med approved specifically for IC; no others exist, so it's possible that you can appeal to Medicaid with confirmation of diagnosis from your doctor. Sometimes it's just a matter of LOTS or red tape.

[Landish]

He prescribed me Motrin 800s and Bentyl instead. I also have Celiac Disease so I am already familiar with eating certain foods.

As far as cereal goes what brands are safe? What deli meat brands are safe? Are all hot dogs off limits or can I have Hebrew National?

I don't know about Bentyl but Motrin is a NSAIDs and this group of medicines is not really good for IC.
About the cereal Nature's Path Honey'd Cornflakes is very good.
Hot dogs, kosher or not are still bad for IC.
Regarding Deli meet, Boar's Heat brand has different products in low sodium and low fat. (not smoked).

Good luck

[maryla]

Just wanted to say welcome, :welcome:

All the girls gave really good advise. I have to agree with Goldfish about not giving up on trying to get Elmiron paid for since it IS the only FDA approved med it should be covered.

I also second that about what Landish said that Motrin is an NSAID and I was told by Dr. Rackley at the Cleveland Clinic to never, ever take NSAIDs that they are just so harmful for the bladder.

I know that at Walmart they have Atarax for $4.00 without a prescription card. That helps me a lot. I'm also allergic to Elmiron and I do instillations of Chondroitin sulfate which is s supplement that can be purchased over the counter.

Hugs and blessings

[Landish]

I know that at Walmart they have Atarax for $4.00 without a prescription card. That helps me a lot. I'm also allergic to Elmiron and I do instillations of Chondroitin sulfate which is s supplement that can be purchased over the counter.

Are you sure? Can I get it without a prescription? I didn’t know that. I’ll be there tomorrow morning.I want to try again. About instillations of Chondroitin sulfate How you do that? And how you feel?

[maryla]

Landish,

I guess I should have worded that differrently. What I meant to say is, with our prescription card, we get charged our usual co-pay $10.00 But if you do not have ins., it's only $4.00

I'm in a hurry, going to gyn, so I'll tell you more about the chondroitin later.

hugs and blessings

[purpletomorrow]

Maryla, I don't want to hijack this thread but I have a question for you--

You said that you were told by Dr. Rackley at the Cleveland Clinic to never, ever take NSAIDs because they are just so harmful for the bladder.

Does that include aspirin? Aspirin is the mother of all NSAIDs.

My GP wants me to take an aspirin a day, but he doesn't know IC and I'm worried.

Thanks for any light you can shed on this.

[Goldfinch]

The most common Nsaids are aspirin, naproxen and ibuprofen. Purpletomorrow, I assume your gp is suggesting you take a phrophylactic 81mg dose of plain aspirin as a hedge against stroke in the future, which is very common.

Many with IC seem to have bladders unable to tolerate Nsaids, which, even in totally healthy people, can cause stomach upset. Not everyone has a problem with them. I can take ibuprofen and aspirin without my stomach or my bladder complaining. I try to use ibuprofen sparingly, but so far no problems.

I suggest you talk to your uro about taking the aspirin. If you try taking that small dose for a few days with no problems, your uro and your gp might agree that the benefits to your overall health are worth it.

[mary124]

Welcome to our group. Everyone gave good advice.
Where do you live? I work for the State of Texas (don't work in the Medicaid area anymore, but I have contacts so if you live in Texas PM me)
My best friend (who is more like a sister to me is on Medicaid and she has some pretty expensive medications and they pay for it all. also her procedures, so you might want to double check on that.

[Daphniela]

Welcome to our group. Everyone gave good advice.
Where do you live? I work for the State of Texas (don't work in the Medicaid area anymore, but I have contacts so if you live in Texas PM me)
My best friend (who is more like a sister to me is on Medicaid and she has some pretty expensive medications and they pay for it all. also her procedures, so you might want to double check on that.

I called medicaid today. I live in Michigan. I asked for paperwork to get straight medicaid. I have to have my doctor fill it out and tell them of my condition so that I can get it. Straight medicaid is only for those with severe medical conditions. That is how it works in Michigan. I plan on moving to Florida by February so hopefully medicaid is different there.

[Daphniela]

Over the counter supplements you can take --

• CystoProtek, which coats the bladder, lessens irritation, and lets your bladder heal itself.

http://www.icnsales.com/CYSTOPROTEK-p-1-c-100.html

• Desert Harvest Aloe Vera, which works with the CystoProtek to sooth and coat the bladder and speed healing. You can find that in the ICN store and here:

https://www.desertharvest.com/shop/i...on=show_detail

The CystoProtek and the Desert Harvest Aloe Vera work better together than separately. My IC specialist says they are both wonderful supplements for an IC bladder.

Prescriptions for urgency and frequency include

• Hydroxyzine -- an anti-histamine designed to stop the histamine assaulting the bladder

• Elmiron, which you know about already.

• Also, vaginal estrogen is important. Loss of estrogen causes PH changes in the vagina, thinning the walls and increasing the odds of a UTI.

As for your diet questions, plain oatmeal is usually safe and free from the preservatives that make an IC bladder react badly.

Deli meats and preserved meats and smoked meats and cheeses are usually irritants to the bladder. You can find more info at the IC diet link, here

http://www.ic-network.com/diet/

Sugar is not great, candy is not great, many people tolerate caramels and toffees and vanilla ice cream; chocolate is usually an irritant, so is coffee and artificial sweeteners are pure poison for most IC bladders.

I remember trying Equal a long time ago and doubling over with the spasms and pain it caused to my poor bladder. That was a long time ago and I didn't know much then.

Hot dogs have preservatives and so they are a no-no. In general, you want to eat real food, free from packaging and preservatives and preparation; things like baked chicken and steamed vegetables and home made soups without tomatoes.

Sorry for the bad news! The good news is that this is controllable for most, and diet makes a HUGE difference, which is a good thing because it's something we can control.

Good luck to you, I know it's a lot to take in at first.

I meant to rely to this yesterday, but didn't get a chance. Is vaginal estrogen nessessary? I am only 29.

[Daphniela]

Just wanted to say welcome, :welcome:

All the girls gave really good advise. I have to agree with Goldfish about not giving up on trying to get Elmiron paid for since it IS the only FDA approved med it should be covered.

I also second that about what Landish said that Motrin is an NSAID and I was told by Dr. Rackley at the Cleveland Clinic to never, ever take NSAIDs that they are just so harmful for the bladder.

I know that at Walmart they have Atarax for $4.00 without a prescription card. That helps me a lot. I'm also allergic to Elmiron and I do instillations of Chondroitin sulfate which is s supplement that can be purchased over the counter.

Hugs and blessings

I called the Elmiron Patient Assistant Hotline and they are sending me some paperwork so I can get the medication for free. I just have to send in my 1040 from last year to prove I meet income guidelines.

[Daphniela]

I don't know about Bentyl but Motrin is a NSAIDs and this group of medicines is not really good for IC.
About the cereal Nature's Path Honey'd Cornflakes is very good.
Hot dogs, kosher or not are still bad for IC.
Regarding Deli meet, Boar's Heat brand has different products in low sodium and low fat. (not smoked).

Good luck

Bentyl is something that is normally prescribed to IBS patients. I don't have IBS, but the doctor said it would help lessen the symptoms since I can't get Elmiron. What can I take for pain, if not ibuprofen or naproxen? I also have TMJ and I am normally prescribed Tramadol, naproxen, and flexeril for that. Is Tramadol ok or do I need a new prescription for something else?
I think Nature's Path has some gluten free cereals. I also have to be gluten free cause of Celiac Disease. I can't do oatmeal because of that. I can eat cream of rice or quinoa flakes though.

[Landish]

What can I take for pain, if not ibuprofen or naproxen? I also have TMJ and I am normally prescribed Tramadol, naproxen, and flexeril for that. Is Tramadol ok or do I need a new prescription for something else?
I think Nature's Path has some gluten free cereals. I also have to be gluten free cause of Celiac Disease. I can't do oatmeal because of that. I can eat cream of rice or quinoa flakes though.

Nature's Path Honey'd Cornflakes is gluten free
I can't help you with pain; I realized I have more pain if I take more medicine. I can only recommend you for pain the IC Diet and a lot of neutral or alkaline water to make your urine less acidic.

[purpletomorrow]

Daphniela, my IC specialist gave me Tramadol for the pain, so I would think you're safe taking that for your bladder

[Daphniela]

I have a few more questions. Do I have to stick to the IC Diet for the rest of my life or just during flares? How long do flares last? Will it ever go away?

[Goldfinch]

Yes...and....no! Do as much reading here as you can about the IC diet. First of all, everyone is different, with different food sensitivities. Some on these boards are very sensitive to many foods, additives and preservatives, some are much less sensitive. You will have to find out for yourself what diet works for you on a long-term basis to help prevent flares. You will also need to figure out what foods trigger flares or symptoms, what you can get away with or "cheat" with, how much, how often, etc. The list on this site is a guideline, and only represents the responses to foods by a large number of people with IC.

The best way to find out your relationship to the IC diet is scientific method: an elimination diet starting with the generally agreed upon least offending foods and staying on those foods at least several weeks, or until your symptoms seem to abate. For many, finding their way around food is a major advance in their treatment. It does take some patience!

The rest of your life is a long time, you will have to take it day by day. You may discover there are only certain foods you have to eliminate. You may also discover that after months of treatment, if you are feeling much better, you might try to add back in (slowly and carefully!) some foods you love and aren't sure about.

Flares are really just a worsening of symptoms. Controlling symptoms is the name of the game here, since sadly there is no cure yet for IC. But there ARE lots of treatment options, and the best thing you can do for yourself is read read read and work with your doctor to find the best overall plan toward feeling better--and staying that way.

[champagne]

I agree about the food sensitivity that everyone is different. I absolutely cannot eat chocolate (so my daughter ate everything chocolate in the house with no problem). However, I have been able to drink red and white wines and other alcohol with no issues at all. Follow the IC diet and then slowly add back one thing at a time to see what it is that causes the pain.

Good luck with the diet.