<p>Hello, I have recently been diagnosed with interstitial cystitis, I am trying to manage it by using diet before trying medicine. I was wondering if anyone on here had any experience with it? Mine seems to have come on after a severe kidney infection, I'm only 23 so I'm pretty bummed to have this condition.</p>
<p>I’m so sorry, theaterbrat. I suffered through a long, miserable bout of interstitial cystitis several years ago. After several misdiagnoses, I was finally diagnosed with interstitial cystitis. Medications didn’t work for me. My urologist recommended a low acid diet as a last resort before surgery, which I followed for almost a week without any relief. </p>
<p>What finally worked for me after suffering for almost a month: I basically quit eating for several days and drank only alkaline water. My symptoms disappeared completely after three days and haven’t returned. I continue to follow a low acid diet today.</p>
<p>My internet research led me to believe that interstitial cystitis is basically an inflammatory process that affects the bladder, and fasting allows the bladder to rest so the inflammation can subside. After the initial fast, it’s a good idea to follow a low acid diet plan since those who have suffered one bout of interstitial cystitis are predisposed to getting it again.</p>
<p>Best of luck to you in defeating this insidious disease.</p>
<p>Theaterbrat: I felt bad for about a year before I was given a diagnosis. I was given a perscription for elmiron and I resisted taking it for a while but once I did, in spite of the fact that I was told it would take 3 months to work I felt relief in a week. Similar to you mine came about after a very resistant UTI. As it was explained to me the bladder lining is damage in a UTI and also is with IC. The elmiron creates a synthetic lining for the bladder. I felt that using the medicine helped my bladder to heal. I took elmiron about 1 to 1.5 years and gradually weaned myself off of it. I don’t know if it was necessary to stay on it that long. Weaning was my decison. Since then I have had episodes that have been treated effectively with medicatons like detrol and enablex. I have taken them for a little while until feeling better and been able to discontinue them as well. I never fasted but similar to Mommo3 I have at times found that drinking water until my bladder is as full as I can stand it repeatedly brings about relief. I don’t know why I started doing that or why it works. It just does sometimes for me. I would suggest that if the things you are doing with diet don’t work taking meds isn’t all that bad and chances are after they make you feel better you won’t have to keep taking them. IC is a diagnosis that I think is very different for different people. By the way for me I find that acidic foods are a problem if I am having problems but when I am not they don’t affect me at all. Good luck and I hope you find relief soon! For more information about IC look at the interstitial cystitis association web page. They are a very supportive group!</p>
<p>I’m very sorry to hear you’re experiencing this constant pain. My episode with IC occurred about 14 years ago. I was having trouble sleeping at night and started to take melatonin regularly, which unbeknownst to me, can cause IC. I stopped the melatonin and took some very low dose estrogen for awhile, which tends to thicken the bladder lining. Took several weeks for full results, but – after about six months of constant pain, I was finally free! I have never had a recurrence, thank heavens! </p>
<p>(Note: if you don’t want to go onto estrogen, you can try a soy substitute like EstroSoy by Nature’s Way – I’m sure there are others.)</p>
<p>Best of luck! Please let us know what works for you.</p>
<p>Oh dear 
That would be very hard to deal with.</p>
<p>I seccond looking into chainging your diet and whatnot before going for the meds.</p>
<p>I was wondering what alkaline water was and looked it up. An article I found suggested using Tums or Alka-Seltzer or a good bottled water containing bicarbonate instead.</p>
<p>Evian and Fiji are two brands of bottled alkaline water. I think it tastes awful, but who cares if it eases the pain of interstitial cystitis?</p>
<p>A note of caution: Green tea is highly acidic and can cause excruciating pain for someone having an IC flare. It’s actually worse than coffee. Unfortunately, I know this from experience.</p>
<p>Thanks! I have a love of Chinese and Thai foods so avoiding those has been hard. I’m going on a no/low acid diet for 2 weeks and then try to add in a few more foods. I haven’t tried the alkaline water yet, I tried drinking baking soda water and ended up vomiting it back up… I’ll pick up some evian next time I go to the grocery store.</p>
<p>Good to know that about green tea. Funny…I love Evian and like Fiji.</p>
<p>I should think that some Chinese food would be okay, depending on the ingredients. Probably you have one of those charts listing which foods are acid producing and which are alkaline.</p>
<p>[Detailed</a> Listing of Acid / Alkaline Forming Foods](<a href=“http://www.rense.com/1.mpicons/acidalka.htm]Detailed”>Detailed Listing of Acid / Alkaline Forming Foods)</p>
<p>Thanks! I just did a 2 month course of Elmiron and it seems to have helped a bit, not as much as I would like it to but some. I’m now on Vesicare to see if that will help my issues. Still mainly sticking to a low acid diet with occasional slip-ups. I also read “The Better Bladder Book” by Wendy Conan and it is full of wonderful advice from anyone having urinary issues.</p>
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<p>Try the website Interstitial Cystitis, IC, Bladder, diet, foods, friendly, caution, try it, caffeine, low, acid, tea, soda, artificial sugar, citrus, cranberry, chocolate. It has a list of best foods and worst offenders. As a gynecologist, I diagnose many cases, although I send them to the urologist for confirmation. I suggest that patients try to avoid one category of offending foods on the list at a time. Often there are just one or two triggers. It may take a little longer but is much less restrictive. And I second trying Elmiron for more severe cases. Many patients get relief within a week or two and can either stop taking it or taking it just once a day.</p>
<p>Ok, so the OP was made by my gyno saying that is what she thought it was but no sure confirmation. I’ve since then been on 3 different meds for overactive bladder with no help. I went to the PCP asking for a referral to a urologist, he refused so I called my gyno for one and she sent me. I had a a horrible uro appt. The dr. refused to listen to what I was telling him about my symptons, said it wasn’t IC because I was “too young” to have it after only one bladder infection. (This bladder infection was enough to make me pass out and I had a temp of 104.) He said it was probably just overactive bladder even though I’m having pain and burning as well as frequent urination. My urine was very dilute which is strange because the last time I went to the PCP he said it was extremely concentrated and I was dehydrated although I’m drinking the same amounts of water. (I only drink water, no soda, tea or coffee.) He wanted me to try the same med at a lower rate even though I told him it dried my mouth out so badly that the enamel was coming off my teeth. He said he had never heard of that happening and that I was going to just have to put up with it. He gave me some samples and told me to come back in 3 weeks. He is the only one in that clinic right now and he is supposed to be just a fill in until they get a perm person but I’m not sure how long that will be. I’ve been dealing with this for 4 years now and I’m honestly sick of it.</p>
<p>You clearly need a second opinion. I would try to get an appointment with a urologist at the top teaching hospital in your area. If you tell us where you live, people might be able to give you some names.</p>
<p>Thanks! I live near the piedmont (Charlotte/Concord/Salisbury) region of North Carolina!</p>
<p>I am going to give you a quick response now but perhaps more later. First, from everything I have heard you aren’t too young. I have had my best luck with urologists who are women but also with urologists who state they have an interest in treating IC in their bio. Its sometimes a little difficult to figure out. I was seeing one doctor from a large practice and then got several mailings from a woman doctor in the practice regarding education a support groups for IC. I never attended the meetings but eventually switched to that doctor. There is an Interstitial Cystitis Association that you can find online and they may have doctor info there. It has been a while since I looked. Most recently I was given a medicine called urogesic blue from my urologist. It did take a couple of days to work but has been very effective. A small annoyance though is that it is a 4 hour medicine and I found I had to be very conscientious about taking it every 4 hours in order for it to be effective. Once the symptoms decrease it is less critical. I took it for about a month and then discontinued it. Perhaps you could ask about it. Good Luck!</p>
<p>Theaterbrat, did you have a cystoscopy at the urologist visit? IC cannot be diagnosed based on symptoms alone, the urologist must do a scope exam to look at the inside of the bladder. I also recall reading that some chronic bladder infections require very long term antibiotic treatment, as the bacteria form layers called “biofilms” that are resistant to antibiotics. Have they tried treating your current symptoms with antibiotics? A good urologist would also rule out the presence of any urinary or gynecological tumors as a cause. How could your PCP deny you a referral to a urologist when his diagnosis was not based on any verification of the symptoms? In addition to a second opinion with a good urologist it might be time to start filing written complaints with your health care provider.</p>
<p>I have a little time now so I will add on. I didn’t really look at how your diagnosis was made earlier today. First, I will tell you that I was diagnosed after having one very resistent infection. It had cleared but I felt like I still had the infection. I was treated with antibiotics for a long time including prophylactic antibiotics. A few of the things mentioned here match my experience. When my problem was persistent my GP sent me to a urologist and I did have cystoscopy. As I understood it this was mainly to rule out cancer and to make sure my bladder looked “normal”. This urologist was also terrible but, the one good thing that happened, I’m sure happened because I was such an annoyance to this urologist. He, as was suggested, sent me to the teaching hospital in our area to the person who I later found out was considered the foremost authority on IC… When the urologist sent me he told me this was a very rare and obscure problem and he didn’t think I had it. (I was in my early 30’s at the time.) For diagonostic purposes they did what they called urodynamic testing. They also did a test where they filled my bladder with a neutral liquids and then a liquid with a chemical in it that would normally be unremarkable but with a damaged bladder lining would cause discomfort. In my case I could perceive the difference. This was the main diagnostic tool used. The doctor told me that it was good enough to assume I had IC and that to get a more definitive diagnosis would involve a procedure that would have to be done under asethesia in the hospital. Neither of us thought this was worthwhile but that was when I tried the Elmiron and it did work. My experiences with multiple urologists occurred when this doctor left the area. For whatever reason, I found that when I went to male urologists they did give me medications to treat my symptoms but were less sensitive to what I was going through and at times less patient with me when I tried medications that didn’t work. I don’t know that this is the case accross the board but I definitely lean toward seeing female urologists. By the way I also had problems with dry mouth with several of the overactive bladder meds, but for me they were effective. This effectiveness was not accross the board or even consistent and I have therefore tried several of them. It isn’t sufficient to assume that because one doesn’t work they all will not work. I learned to take suckers with me wherever I went when on those meds but the relieve was well worth that discomfort to me. The urogesic blue may be new because it was just perscribed for me in the past year. I haven’t had any other side effect other than urine that turns a really pretty shade of blue. Just to add to the frustration. The original doctor that diagnosed me told me that the antibiotics I had been taking could have been an irritant causing the problem to persist, I’m not sure if I am remembering correctly but I think he said they created a more acidic environment in the bladder. I hope that some of this is helpful to you and that you find relief. I feel for you. If there is anything I have learned it is important to have a doctor who will listen and work with you. All the best!</p>
<p>Old wives’ tale, maybe, but I have heard that cranberry juice is good for this problem. I am sure that someone on CC knows definitively about this, one way or the other.</p>
<p>Cranberry juice is acidic and creates an unfavorable environment for bacteria and is therefore good to prevent and possibly fighting UTI’s. However with IC the acid may actually increase symptoms since here the problem is damage to the bladder lining. It is a very tough call because the two can feel exactly the same. If the problem is IC cranberry juice is probably a bad idea.</p>
<p>I had a different doctor today, he actually did something besides look at me and throw another med at me which was nice. He did a cath which shows I’m not fully emptying my bladder, it was extremely painful and it has been several hours and I’m still in pain. Has anyone here had that done? Also, he took time to talk to me and build rapport which is something other doctors haven’t done but he did ask some things that made me rather uncomfortable. He thought it was odd that I have made it to 24 without having sex or a boyfriend, he asked if I was a lesbian because I said I wasn’t interested in romance at this time in my life. I grew up/live in a tiny rural town in NC, and went to an all girls school for college so my dating options are limited. I said I didn’t want to date anyone from my hometown and he said it wasn’t normal to be asexual at my age. He also thought it was weird that I didn’t drive even though I explained about my eye issues and told him I was in driving lessons. I’m going back in three weeks for urodynamic testing, and I have started a bladder diary and urine tracking. Hopefully this will lead to some results. He gave me Gelnique which is used to treat overactive bladder but the packing insert says not to use if one cannot empty their bladder fully - which is what the cathing showed today.</p>