Help! My IC is flairing up again.

[Sand]

It's a long story of how I came to know I have IC and I still have doctors who don't have a clue. I find I have to tell them what they are dealing with. I want to see a specialist but it's pretty unheard of in Canada. Does anyone know of a good IC doctor close to Toronto? I live close to Buffalo and luckily I have coverage in the states because my husband works at Buff State so I am willing to see a specialist in that vicinity as well. I will refer to the list here on the website, but a personal reference is nice. I am currently only on those bladder numbing pills that turn your pee orange and I have been taking 6 or so a week since the beginning of December. I have been dealing with IC symptoms for 9 or 10 years and went through two surgeries (Cystoscopy and lasoroscopy) trying to determine the problem. I finally discovered the problem a year and a half ago when I was drinking a lot of cranberry juice trying to control my symptoms until I realized the cranberry juice was the problem and I learned about IC on your site. I now am careful to only drink water and milk and I can't have chocolate or caffeine. I'm not sure about other foods but I have eliminated vitamins as well. For a long time this was enough, but lately nothing is really working. I did have an actual bladder infection which was raging before I realized it was more than just IC and now I believe my bladder is in need of repair even though I no longer have a bladder infection. Does anyone else have trouble knowing if they have a bladder infection? Is there an easy way to tell? Also, I have discovered that when I have sex I am okay but if I have any direct clitoral stimulation (oral sex) during a flair up, I am at my worst for the next few days. Currently I am climbing the walls and my nerves are a mess. Does anyone else have this problem or is this more than IC?

I have ordered Cystoportek and am waiting for it to come in the mail. I tend to get IBS so I am concerned it may flair up but it is better than what I am dealing with. Should I be trying Elmiron first (is that the right name?) Anyways, I'm feeling very alone and frustrated. I'm lucky at least that it is usually better than this. I haven't had a flair up like this in a long time. My doctor put me on Zantac. I didn't think it was helping but maybe that is why I haven't had a huge flair up in a while. I stopped but I have gone back on it now...has anyone heard about something like Zantac (acid reducer) helping...is it like Prelief?

[mommawalker]

I have been on Elmiron for about 3 months and it is has already made a huge difference for me. It makes my Ultram(non narcotic pain med) work when before nothing made the constant burning and pain and needing to go away! I highly recommend you talk to your doctor about it! I wish I had more info but I am new on here as well and dont know much! I do know the feeling of your doctor being clueless which in returns makes you feel like your crazy. But your not! We just have to find the right doctors!! God Bless!

[Sand]

Thanks. I have an appointment but not until March. I will consider Elmiron then. For now I will try Cystoprotek. What pain med did you say you used? I have tried Advil but to no avail. I can't use Codeine...it makes me crazy so Tylenol 3 is out of the question. Thanks again for the response.

[ICNDonna]

Advil and other anti-inflammatory medications (ibuprofen)are a problem for many ICers. You might give regular or extra strength tylenol a try. Just be sure to not exceed the written instructions.

Donna

[Sand]

Wow. Thanks. I did not know this. I will take extra strength Tylenol from now on.

[valkay18]

It is so hard to say what would be causing the flare. Some people are very diet sensitive and others are not. I am one of those who is very diet sensitive. I am especially sensitive to whole wheat and any additives and preservatives that are in almost all store bought foods. My husband (God love him) makes me white bread from scratch with flour bought from the natural food store. That is the only bread that I eat. I found that any orange cheese or aged cheese really flared me up. I can only tolerate mozzarella and white american (boar's head brand). I also found that some butters flared me up, as some contain Lactic acid. So, I buy the organic butter, which contains no acid. I can't even tolerate "store bought" pasta noodles. I buy those in the organic section as well. So, again, it depends on how diet sensitive you are, but I pretty much had to go to all organics, no whole wheat products (including noodles.. I just do the white noodles), only the white non-aged cheeses, etc.... Of course, I only drink water and milk (rarely).

In terms of the Zantac, I am not sure that is a good idea. Some drugs like Zantac contain other non-active ingredients that actually cause IC flares. I know most people do no seem to have trouble with PPI's like prevacid or prilosec, but I am not too sure about Zantac. I am currently on Elmiron and have been for about a month (went off of it for awhile do to trying to conceive). I have only been able to take it 2 times a day and so far I am not noticing a difference. It can take several months though.

Well, good luck! I really hope you get your flare under control!

[Sand]

Thanks for your response. I am trying to go very low acid for now and see what my triggors will be. I don't believe I am terribly food sensitive but definitely can't have pop, juice, caffeine or chocolate. So far breads and cheeses and even some fruit is okay, although I've cut out the fruit mostly for this week to see if it makes a difference.

Thanks again.

[Sand]

Thanks for the Zantac info. I may go off for a bit.

[wizbe]

I just discovered that whole wheat triggers flares for me as well. I didn't know... and I ate a whole wheat carrot muffin before going on the plane the other day. - not good... a little humiliating! So whole wheat is out for me too!

I hope you will find that something works for you soon... I am doing instills at the moment - will be praying for you!

[ICNDonna]

I also have a problem with whole wheat! I can eat white bread and many of the grain breads, but one slice of whole wheat causes me to flare, along with diarrhea.

Donna

[TexasHoney]

Whole Wheat is rough on my bladder me too.

[TSolares]

I need to pay attention after I've eaten whole wheat. I also am allergic to so many things like preservatives (which are in most food). I am so surprised by the new things that attack me, at first I would get a swollen tonge and esophogas and get acid reflux and a migrane, now it's IC, not migranes anymore. I don't know which I would consider worse. But I will pay attention to bread now :) I guess I will have to shop at Sprouts and get organic.

[Shaelyn]

It's a long story of how I came to know I have IC and I still have doctors who don't have a clue. I find I have to tell them what they are dealing with. I want to see a specialist but it's pretty unheard of in Canada. Does anyone know of a good IC doctor close to Toronto? I live close to Buffalo and luckily I have coverage in the states because my husband works at Buff State so I am willing to see a specialist in that vicinity as well. I will refer to the list here on the website, but a personal reference is nice. I am currently only on those bladder numbing pills that turn your pee orange and I have been taking 6 or so a week since the beginning of December. I have been dealing with IC symptoms for 9 or 10 years and went through two surgeries (Cystoscopy and lasoroscopy) trying to determine the problem. I finally discovered the problem a year and a half ago when I was drinking a lot of cranberry juice trying to control my symptoms until I realized the cranberry juice was the problem and I learned about IC on your site. I now am careful to only drink water and milk and I can't have chocolate or caffeine. I'm not sure about other foods but I have eliminated vitamins as well. For a long time this was enough, but lately nothing is really working. I did have an actual bladder infection which was raging before I realized it was more than just IC and now I believe my bladder is in need of repair even though I no longer have a bladder infection. Does anyone else have trouble knowing if they have a bladder infection? Is there an easy way to tell? Also, I have discovered that when I have sex I am okay but if I have any direct clitoral stimulation (oral sex) during a flair up, I am at my worst for the next few days. Currently I am climbing the walls and my nerves are a mess. Does anyone else have this problem or is this more than IC?

I have ordered Cystoportek and am waiting for it to come in the mail. I tend to get IBS so I am concerned it may flair up but it is better than what I am dealing with. Should I be trying Elmiron first (is that the right name?) Anyways, I'm feeling very alone and frustrated. I'm lucky at least that it is usually better than this. I haven't had a flair up like this in a long time. My doctor put me on Zantac. I didn't think it was helping but maybe that is why I haven't had a huge flair up in a while. I stopped but I have gone back on it now...has anyone heard about something like Zantac (acid reducer) helping...is it like Prelief?

Did you know you can get AZO Urinary tract infection testing strips at the drup store? They are over the counter and pretty reliable. I always have some at home to make I am not taking antibiotics for a UTI when it's only a flare up. Also, I get flares after intercourse and oral sex. It usually comes on at the 10-12 hour mark post sex and lasts for about 6-8 hours. Have you tried taking Serax after oral sex or just for the pain in general? It calms the nerves down so you might find a little relief when you are in bad pain. It's really trial and error when one has IC. Don't loose hope.
On a different note, I didn't realize wheat bread and pasta can give us flares. I have been eating a ton of both lately! It's certainly increased my freqency and IBS symptoms!! I guess I better stop!

[TSolares]

I am going to purchase AZO UTI testing strips now that I know I can. My friend also has IC and advised me to pee right after any kind of sex and wash myself down with a warm washclothe and a medicated vaginal wipe. I have not bought the wipes yet, but sex does seem to trigger the flares. I have wondered if it is possible that we are allergic to semen?

One of the members posted about trigger points, so I asked my husband if he would massage them and he wasn't that interested. Plus it would just lead to sex...

[Shaelyn]

I am going to purchase AZO UTI testing strips now that I know I can. My friend also has IC and advised me to pee right after any kind of sex and wash myself down with a warm washclothe and a medicated vaginal wipe. I have not bought the wipes yet, but sex does seem to trigger the flares. I have wondered if it is possible that we are allergic to semen?

One of the members posted about trigger points, so I asked my husband if he would massage them and he wasn't that interested. Plus it would just lead to sex...

I purchase those benzlkonium chloride antiseptic towelettes by PDI over the internet. They're cheap. I also purchase hydrogen peroxide wipes at the drug store(in the first aid section). Both have prevented any urinary tract infections after sex for me, another big issue I was having besides this icky IC! Only use the hydrogen peroxide wipes on the rectum as they will sting the vaginal area. I use these fist on wiping down the rectum, secondly I take a PDI towelette and wipe the rectal area again, then I finish up with a PDI wipe vaginally. It takes just a a minute really...much easier than bottle washing and using wash clothes. Do all this before you have sex!

The other information I forgot to mention that I got out of a very good book I read on sexual cystitis and urinary tracty infections is that it is very important to wash the clitoral and lip area down with cool water post sex and then take a little ice pack and put it down there for a little while afterwards. It will make all the difference in the world!!

[Sand]

Thanks for your reply. What is Serax? I am going to purchase the AXO bladder infection test strips. I am so glad we live close to the states. None of this stuff is available in Canada. And what did people do before the internet? Really, this site is a life-saver.

[Sand]

Incidentally, I have started taking 2 Cystoprotek a day and gone on the IC diet for the most part and am feeling quite a bit better...hoping this will continue. Thanks to everyone. It's good to feel like I have some control of my symptoms again.

[TSolares]

Good to know about the ice pack after sex. I will have to go on line and check on the PDI towelettes. Thanks for the info!

[funkygrandma]

I am new to ICN but not to IC. I felt like I was crazy because not one doctor seemed to know what was wrong. I have suffered from UTI's most of my adult life (I am 60) and I suffered from severe pain in my left side for years. About 15 years ago I had a hysterectomy and my left ovary was also removed due to cysts which caused it to burst (even though my doctor said there was nothing wrong lol). During this surgery it was discovered that I had a 20 year build up of endomitriosus:confused:. Thank god I was past the child bearing years!!! It now seems both my daughters are likely to suffer the same way I did so I have spoken to them and they are speaking to their respective doctors. I went through a battery of tests, including IBS testing - ladies in Canada - I can relate to your problems about our health care situation - I was 5 days in Langley Memorial Hospital emergency while the doctors tried to figure it out. I finally went back to my family doctor who put me in touch with a great urologist who was able to diagnose me with IC. I underwent instils immediatley after that and was okay for a year. I flared and went back for instils and it has been 2.5 years but now it is back again. I have to wait until March 4 before I see him again and am removing foods and drinks to see if my symptoms calm down any. I am also trying low sodium Tums as I have heard these may help. I need the low sodium as I have high blood pressure. I also heard that the Langley Walmart might stock Prelief so I called them and they do not. I guess for now the only way to get it is to order it online. If I hear any different or if Walmart does agree to stock it, I will let everyone know.

[wizbe]

I live in BC also and I was told that I would have to order Prelief from the States. Sorry to hear of all of your trouble. Hope it gets better for you!

[Sand]

Well, I have been on Cystoprotek, 2 tabs per day for 21/2 weeks now and have stuck to a pretty strick IC diet and have been doing much better. Thank the Lord. Anyways, my husband has been very supportive and has made me vegetable sauce rather than tomatoe sauce for pasta and other such creative inventions in the kitchen. He is a fabulous cook. Also, I have stopped using fabric softener on my undergarments and give them an extra rinse and I believe that is helping with my clitoral pain. I think that the cheaper fabric softener sheets that we were using were really bothering me. Really, simple changes that have made a big difference. I still feel some symptoms but would consider myself on the mend:angel: