my IC is constant.. which is confusing..

[jena55]

I have read over and over on this board how people are in flares. Everyone talks about how to manage them, how to get thru them, etc etc....

Here is my confusion... I don't think I really get flares. My IC is constant. Every single day of my life I feel the need to urinate ALL the time. Everyday I have problems with pressure, IC tummy, frequency etc etc etc.
I cannot remember one day in the last 8 years that I have felt normal.. or close to it. Why does mine not come and go?? Have I just not found what will help yet or could it really be there is something else going on with me???
I would love to wake up some day and have a semi-normal day, but for me that is just not reality. I have not had a single day at my current job (been there 7 years) where I have not felt the constant need to go to the bathroom and constant discomfort sitting at my desk. Anyone else like this?

[kadi]

I have some level of symptoms every day, though thankfully not as badly as my first 2 years with IC. A flare for me is an increase in symptoms compared to my usual level.

[plmokn]

When my IC first occured I had symptoms 24/7 and a pain level of 5. I did not get any relief until starting on Lyrica, then my pain eventually creeped down to a constant 2-3 pain level. So my flares became times when my pain would reach the 5 and 6 level. Now that I'm on Lyrica, Celebrex, Atarax, Birth control and Cystoprotek my pain level is mostly at zero, my flares now occur at a 2-3 pain level unless I eat something really bad an accident. My point being that my IC was constant until I got good treatment and now that it is under control I only have the occasional flare.

[leelee88]

When I was first Diagnosed for 2 years I never had relief it was just until recently I started to have some good days and am able to do things I so missed!!! But i have tried many different meds..

[Briza]

Jena, I am so sorry your symptoms are not yet controlled...I see your very short list of meds that you are currently taking and also your very short list of past treatments...YES there are SO many MORE meds and treatments for you to try....if you and/or your dr have not done so, PLEASE research all possible treatments/meds/self help stuff and try all that you can because your lists are so very short that it very much seems like you have not been given the opportunity to try many many many options that may very well work for you. It may take some time of trial and error, most of us do have to go thru that, but majority of us do eventually stumble upon a combo of meds/treatments/self help that gives us MUCH relief and often days of no symptoms at all!

If you haven't done so already, please take a look at the following link as it gives much info on variety of treatments/meds/self help tips that could be of much help to both you and your dr in finding what works for you:

http://www.ic-network.com/patientlinks.html

Also, if you have not done so already, buying the book: The IC Survival Guide ,by Dr. Moldwin, I highly recommend. It is available for sale here in the ICN Shop and also on reputable online bookstores...you may even be able to find a used copy from one of the online bookstores at a very very reasonable price, tho the new copies are not that expensive either.

My first 2 yrs with symptoms both before and after dx were the most difficult. Fine tuning my treatment regimen took another year or so but so very worth it to put the time into that as I no longer experience symptoms 24/7 and have not for a long time. Obviously it takes a very supportive and interested dr to help a patient with this...so if you do not feel that your dr is open to trying the other many successful treatments that are available and taking some input from you from your own research, then it might be time to seek a second opinion. My gyn is my IC dr and he is by far not an IC expert, but he is willing to take my input and most things that I have asked for him to let me try I read about here on ICN or in THE IC Survival Guide book, and 9 times out of ten these treatments have worked for me and have greatly reduced my symptoms to minimal and many times non-existant!

Also, I can not stress how important determining my diet triggers and eliminating them or at least eating them with severe caution in minimal amounts has helped me, as has reducing stress (both physical and emotional). So if you have not given the diet a good shot, please do! Many of us find that our meds are pointless or at least much less effective if we continue to eat/drink the things that aggravate our symptoms. Drinking lots of water is also key for many of us to reduce symptoms b/c doing so keeps urine diluted and therefore often reduces urgency and pressure, which in turn can reduce frequency. Cold packs and antispamodics/analgesics, such as Rx Pyridium or its OTC versions Uristat and AZO Standard are a mainstay of my treatment program for very fast relief from the very symptoms that you describe.
Hang in there...I think you have so many options yet to try that the likelihood that you will find combo that works for you is very high!:) Take care!

[Preacher-Girl]

I agree with Briza about the diet. I have had amazing improvement from feeling like I had to go every second of the day and it is only because of the diet since I have not been given IC meds yet. I have seen about 90% improvement from pressure and frequency after only 21 days on the diet. I don't even have nocturia! I see that you can take Wellbutrin. I am wondering if you could try Elavil. That worked 100% for me but I cannot take anti-depressants because they trigger mania for me. Racing thoughts, high BP etc. I had awful pressure and frequency so I understand your suffering. Have you tried the IC diet guidelines to find your "bad" foods? Also, it probably goes without saying but...caffiene is the worst thing you could possibly put in your body for frequency and pressure. Maybe you already knew this but I just wanted to make sure.:)

[ICNDonna]

Diet is very important for me too. It took me a long time to find all of my triggers, but was well worth the effort.

Donna

[elamar]

You really need to be on some strong antispasmodics to get that frequency and urge under control. I was like you. I had non-stop frequency and would pee every 10 minutes around the clock for days at a time. I just wanted to die. I was put on ditropan xl (generic version) which said take 1 pill a day. I also had utira-c (sister med to urelle and prosed) for flares. You can take up to 4 of those per day. Out of desperation, I took 4 ditropan throughout the day, along with the 4 utira-c per day. After about two weeks my symptoms decreased dramatically. I was so exhausted after months of no sleep. After the frequency began to calm down, I slowly weaned back on the ditropan but stayed of the full dose of utira-c. After a few months I was able to stop the ditropan and then started cutting back on the utira-c. I now usually just take 1 utira-c in the morning as a maintenance dose. Some days I can skip it all together. One big note of warning, ditropan can cause severe constipation, especially at the higher doses. You may want to consider using something like miralax to keep the bowels moving so you don't create further problems. The ditropan will also dry you out, your mouth will feel pasty and your eyes may feel dry. I used to rinse with biotene mouthwash to help with that. It was worth trading the symptoms! I also did tell my doctor about taking the higher doses of ditropan. She didn't seem to mind, just wanted to make sure I wasn't constipated. Anyhow, that's my story. Unfortunately, many doctors mistake our symptoms for over-active bladder. I tried all those meds first - vesicare, enablex, sanctura, etc... They just are not strong enough to help with the spasms. Ask your doctor for generic ditropan xl (something like oxybutin). I believe my dosage was 10 mg. Also about urelle, prosed or utira-c. They turn your urine blue, they sanitize the urine and calm down the muscle spasms. There is also one more that I know of called Levsin which is an antispasmoic without the dyes. It didn't seem to work that well for me. I hope this helps. Also, if you see a urologist, they should have free samples of prosed or urelle. My doctor gave me a two week trial of each to see if I noticed any difference between them. That way I didn't waste a bunch of money buying more meds that didn't help. Prosed is usually the most expensive since there is no generic for it. If Urelle helps you, utira-c should work too. It just may take some trial on your part. Good luck to you. I have been in your shoes and it is still a daily struggle to keep the spasms under some sort of control. I always have a tinge in the background, but if I keep busy I don't usually notice it as much.

[jena55]

Thanks everyone for all the info and suggestion.

I should probably update my signature. I guess it has got kinda hard to keep up with everything I have tried and what I am currently on because it seems to change so much. I had been away from the boards for awhile and recently have felt desperate and am back looking for help. I haven't updated my signature though. So... that list isnt everything I have tried.

This week I have just started the Aloe capsules and also Premarin Cream. I have had a problem with vaginal dryness all throughout this ordeal, so that is why I am giving the cream a shot. I am only 28 though- so I am not sure how much it will help me.

I feel I really need to give the diet a go, but for me it is very difficult. I am sure it was for alot of you too. I am single though and probably the world's worst cook. It is very, very hard for me to be creative in the kitchen. I do drink some pop which I am sure I need to give up. Any suggestions on caffeine withdrawal PLEASE let me know. I have given it up before for a few weeks until a major stressful event in my life, then I was right back to it unfortunately. :/ During those few weeks though I saw no change in frequency. The only change I did see was change in frequency of my bowels- aka major constipation!! That was extremely hard to deal with on top of the withdrawals and all my normal symptoms too.

Another thing for me is that I am now beginning to wonder how much infection may play a key roll in my issues. I do not have pain (other than the frustrating pressure) and I have never had a UTI in my life. I cannot clearly remember a specific time when all this began, but thinking back, in college i was diagnosed with a clamydia infection. Prior to that, i never remember any of this. As a matter of fact, i had one of the strongest bladders around... i could go almost an entire day and not have to use the restroom. Since that time period though my symptoms have been constant. Out of college, once I got insurance and was able to start going to the DR, i was told i had ureaplasma. I took the standard two week course of antibiotics. It is hard for me to remember if I found temporary relief... but i do think i was tested negative for it a few weeks later. However, over the next several months I fought BV and yeast infections off like crazy- once again something that had never been a problem for me before. About a year after the first test, by my request, my dr tested for ureaplasma again and i was positive. I took again a 2 week course of antibiotics... i continued in a few months to get the BV and yeast again though. This was rough time in my life... was going through a devastating break up.. and i think i failed myself by not getting tested again right away. It wasnt until this last November when I begged my dr to test it for me again. Sure enough, positive for Ureaplasma. I was given a 2 week course of antibitoics and sent on me way. My dr never even mentions that this could be a connection to my symptoms. It is like she just feels it is something we found while looking for something bigger, but not a big deal. Now I am beginning to wonder. I know antibiotics and this whole infection thing is controversial... but I am really a bit curious. I read somewhere that Ureaplasma can be a big cause of vaginal dryness in younger woman and i have dealt with that every since the claymdia infection (which is a sister of ureaplasma!). I actually clearly remember one night... and although I didnt connect it at the time.. it was shortly after I took a round of antibiotics for the ureaplasma.. I was intimate with my boyfriend and we were both astounded at how wet I was. Sorry, i know that is TMI.... but it may be another piece if the puzzle. It didnt last long though because within a couple weeks my problems were returning. I just wondering if a longer course of antibiotics would have helped??? hmm

OK sorry to go on and on and on... but these are just things that are weighing heavy on my mind right now. I am going back to my gyn in two weeks at my request to test for ureaplasma again. I will discuss all this with her, but I fear the look of "you are crazy" that we have all received so many times. :/

Everyone have a happy easter. I am headed out for the day, hoping to keep my symptoms at bay for a full day of shopping with my mom!

[Preacher-Girl]

I will think about some suggestions. I was majorly addicted to caffeine and I have some ideas for that. I am wondering....what kind of doctor are you seeing? I really think diet and lifestyle is key for you but I would suggest a good uro and gynecologist. Or a uro who ONLY treats women. It sounds like you just have a gynecologist and mostly they are not good with these things. It seems as if she may be doing you a disservice by not recommending a good uro.

One thing I have learned through many health problems (my bladder is not my only problem) is that I need to take total control of my health. I long to be 28 again. If I had done what I was supposed to at that age I wouldn't be struggling with many of the things I struggle with today...sleep apnea and blood pressure problems to name a few. Often, we all make our lives more difficult than they need to be. I would encourage you to take control of what you can control now. Your bladder issues are simply not your fault but you have control over your diet. Please don't do what I did. Don't wait until you are "older" or you will have many regrets. You can kick this thing now - I know you can ;)

PM me anytime.

Angela

[jena55]

PreacherGirl-

I would love to hear those kicking caffeine suggestions, so let me know what you think of!!

My gyno is actually really good... or so I thought until i started thinking more about this ureaplasma thing. I do have to give her credit though because before her I was just going to a standard HMO gyno (you know you get your 15 minute appt and dont even think of asking for anything else). That gyno never even tested me for ureaplasma. I saw that gyno for 3 years after college until I realized I needed to look for someone better. My new (and current) gyno found ureaplasma after my very first visit to her. I only wish that at that time I had known enough to start asking alot more questions. I am going to see what kind of responses I get at this next appt with her. She has been good about letting me try new medicines and trying to think of alternative treatments, so there is some hope there. I just dont know why a longer course of antibiotics hasnt been suggested. When I was dealing with the yeast infections, she did put me on a longer course of treatment for that. I am now thinking though that maybe we were just treating symptoms and not the real problems. Anyhow, she is a pioneer in the women's health field so hopefully she will help me some.
I also have seen one urogyno at Loyola. I will be seeing her again in May. The first appt I did not find of very much help, she didnt even take a urine test!!! That certainly confused me. I am going back though and plan to ask ALOT of questions. I really need to learn to speak up for myself alittle better. I'm a shy person by nature, which I think hurts me at times.

Anyhow, throw any of those suggestions my way. And yes, I do want to do something now at 28. I am not married and have no children. I fear if I dont get this under control, I may sacrifice that by letting these "family building" years pass me by.

[Preacher-Girl]

Jena,

I kicked caffeine by treating it like a drug and titrating it down. Also I pray a lot for God to give me the strength to survive without it. Figure out how much caffeine you have daily and begin cutting back slowly. Let's say you have 3 big cups of coffee a day. That's approximately 300mgs of caffeine. Cut back to 2 cups for a few days. Then, maybe 3 days later, cut back to one cup. Then you're at approximately 100 mgs of caffeine. Then, after another 3 days, try 2 cups of tea. One cup with 2 regular teabags. That's 80 mgs caffeine. Stay there until you are comfortable. Maybe even one week. Then cut it down to 1 teabag a day. Now you're down to 40mgs caffeine a day. Then cut down to decaf tea. It has 4 mgs of caffeine per teabag. Start where you're comfortable. Hmmm... 5 decaf teabags a day puts you at 20 mgs of caffeine. Then just keep taking away bags one by one until......voila! You did it! But.....

After all that work, I would suggest you make a plan on how you are going to handle stress. Caffeine is kinda fun but it actually causes more stress. But I think you will feel so good off caffeine you may be able to take walks or other moderate exercise and that should help get rid of the stress. Once you kick caffeine don't give yourself the option of going back on it. I only have caffeine for emergencies now....like if I'm too tired to drive without it. It is extremely rare and it's not good for my bladder. I really only do it when I have no option of taking a nap.:)

You'll get there!!!

Angela

[TexasHoney]

Dropping caffiene has helped me have flares less often. I occasionally still hace coffee but in very small amounts. Jena, I'm sorry you haven't found anything to help you IC is a very tough disease to get a handle on. I don't feel like I have made near of progress in the 5 years after my diagnosis. I hope things get better you someday. If only they could find a cure.

Hang In There