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Hello,
I am suffering with Interstitial Cystitis and find the diet very boring. Anyone have any ideas? Food pairing, or ideas for a salad. What a bummer not to be able to have any salad dressing. Plain olive oil is not too good. I hope this goes into remission---It has taken a good part of my life away with pain and deprivation. Thanks!
Cancer Arthritis Surgery Atarax Dry mouth Elavil Interstitial cystitis Prostatitis Oxycodone Pain Menopause Neobladder Memory Fibromyalgia Hydroxyzine Bladder cancer
One word, Elavil. Google IC and Elavil/Amytriptaline. Stopped IC dead in it's tracks, thank goodness.
IC was a nightmare, but I don't even think about it anymore.
Really! No kidding! Isn't that a tricyclic antidepressant? It just stopped all your symptoms and you were able to eat normally and that was that? How fast? I am taking Oxycodone for pain and Librax for spasms, and Elmiron for (hopefully) healing. Who told you about Elavil, a urologist? Very interesting. And THANK YOU! Holly
Ps. Did it make you gain weight? Those type of drugs usually do, and a dry mouth. Are you still taking it?
Yes, it is a tricyclic antidepressant, it is not used as an antidepressant anymore. But, it does get used for all kinds of other things.
I didn't even know I had IC until after it was gone. I started taking the Elavil for a sleep disorder. Almost instantly all of my symptoms, IC and others went away over night. It wasn't until years later that I found out that the horrible pain I was having had been IC, and upon research found out Elavil is one of the drugs that can make it stop.
Elavil can be very useful in halting nerve pain. The dose that is used can be is small as 10 mgs which won't make you gain weight. Originally I was put on 75 mgs. and I did gain weight a little over the course of several years, but none of that mattered because the pain was gone. I am only on the 10 mgs now, I kind of think 75 was not needed, but at the time they were just really learning about all of the additional benefits of Elavil. Doses have been re-evaluated.
For me Elavil has been a miracle drug for so many reasons, I've been on it for years.
Thank you so much for taking your time to tell me this! I am suffering terribly, and worse right before my period. How long did you suffer? So you didn't know that the burning was IC? Did you think you had a bladder infection? That is how I got diagnosed. I was begging my gynecologist for antibiotics and she said then she didn't think it was infection, but IC. I totally agree, and hope it is not more. I read one post where someone had it for a long time, and then recently was diagnosed with bladder cancer. I am trying to be a good patient. I will ask my doctor about the Elavil. I have always hated those tricyclics, but I will try snake oil at this point. I am going to go in the poorhouse buying only Fiji water or Evian. The others have preservatives and/or potassium! Thank you thank you thank you. I am very interested about what you said that it just stopped it overnight, and you were taking it for a sleep disorder! Imagine that! I learned on here about Librax, which was a lifesaver last weekend when I came this close {} to going to the ER. I got ahold of my doctor and he called some in. How are you feeling now? Sleeping ok now? Holly
I have been diagnoised with IC for years and do not follow a special diet. I do take Elmeron and used to take Librax but got off. I have had a lot of really bad burning during the last year. I know that some foods trigger the pain but just have lived with it as part of having fibromyalgia. What foods do you avoid? Has anyone else tried the Elavil?
Thank you for your reply. I am sorry you are suffering with both IC and Fibromyalgia! I know they are giving Nucenta now for Fibromyalgia. I havent' tried the Elavil, but talked to one of my doctors about it. He said I would be screaming for him to take me off of it if I did go on it, so I decided if he said that, there is no way I would be able to tolerate the blurry vision, dry mouth, weight gain, etc. I just ordered the cookbook "A Taste of The Good Life" a cookbook for IC diet. She is a good author, as she tells you why you can't have certain foods like aged cheeses and other foods. The foods that are acidic of course you have to avoid, but I found Prelief (OTC but you have to order it at the drugstore) helps alot. I still am fighting with that last cup of coffee. I know I am addicted to the caffeine. Basically, I find that if I just drink Fiji Water and not eat anything I am pretty good. My pain is so bad I have to take Oxycodone. If I watch what I eat, I am better than if I get stuck eating in a restaurant. Apparently the foods that bother me the most are the ones that contain sulfites and Nitrates/Nitrites, as they cause a histamine production. Also I read that if you try to drink wine (which has sulfites), the alcohol interferes with the body's defense mechanism against histamines, and it is a double whammy.. . Pears are sort of safe for me, but that is the only fruit, and grilled american cheese sandwiches on boring white bread are my lifesavers. I hope you feel better.
I am one who suffered from IC many years and then developed bladder cancer. Prior to my cancer diagnois. I was seeing Dr. Robert Evans in Greensboro, NC who is considered one of the gurus for treatment of IC. He does lots of research on it and lectures to doctors across the country. You can google him and get some good information also. He prescribed Elmiron, Elavil, and an antihistamine for me. It helped me tremendously and I had no side effects except SLEEP which I needed disperately since I was getting up so much doing the night. At first I was groggy during the day but after using it about a week, this did not bother me. It did not cure me but helped. (From 10-12 times a night down to 3-4)
I found that certain foods - oranges, watermelon, canteloupe, strawberries, peaches, (acidic foods) bothered me. I learned to avoid them. Other than fruits, I did not notice other foods that bothered me. Once I went on a very simple IC diet-ate nothing except a few safe foods and it did not help me. Everyone is different.
Probably one of the reasons I developed bladder cancer was that I never drank much, very little water. Since I did not flush the toxins out of my body, the cancer was able to begin, (my theory from what I have read, not the doctors). If I drank anything, I could not work, shop, do anything. In order to lead a life at all, I had to do that but still suffered so much. Cancer was like a blessing to me because my bladder has been removed and I can live a normal life again. I tell people that IC was much worse than cancer and it is the absolute truth. I feel for all of you who are suffering with it.
Balihigh
Thank you so much for your reply. I appreciate all you shared. Although you went through SO MUCH, you are feeling good again...Hooray! I would tend to agree with you about the water. If an already inflamed surface has contact with the concentrated acid in urine, that would make sense that it would speed already abnormal cells to a cancerous state. I will do research on that doctor that you recommended, and see what I can learn. Can you tell me please what do you do if you don't have a bladder? Did they make a new one, or what? I know that sounds like drastic measures, but I am glad you are free from your pain. I am drinking lots of water, Fiji and Evian only, but there were years I drank nothing besides diet soda. For a long time I drank red wine, too. I think the water is the most neutralizing and flushes the toxins out like you said. How long did you have IC before they said it was cancer? I also read in the IC cookbook about cold brewing coffee in the refrigerator (1 and a half cups dark dark roast coffee in 2 cups of water, makes a concentrate, that you can add water to) I hope it helps some, as I just can't seem to kick that last cup of coffee. I have lost weight as the red wine is out, and so is all the snacking as with Elmiron, you have to have that empty stomach. I guess it is a good thing to lose weight, but I feel like it was from deprivation. Good thing we can have vanilla ice cream and french fries. Kind of saves your life....Thanks for writing! Holly
Holly,
I forgot about milk. The last two or three years I could not drink milk or eat ice cream. It caused lots of pain. I always loved milk and that was horrible giving that up. Coffee I never liked or drank. Tea bothered me some also so I mostly drank water when I drank anything.
When you have your bladder removed, there are 3 choices. One is a neobladder where they take about 6 feet of your colon and make a "bladder". It sort of works like the old one but you never have a sensation to go again. It must be done by the clock and men are more successful with it than women because they have a longer urethra. An Indiana pouch is another internal pouch but they make a stoma or opening on the stomach. You must catherize yourself each time, again by the clock. My diversion is the outside bag much like used with colon surgery. It is the simplist and I am very happy with it. I change my bag every 4 days. The biggest advantage to me is that I can connect to a night bag and sleep ALL night. With the other two diversions, you must get up every 3 or 4 hours to empty or catherize. This was a no brainer for me since I had suffered so much getting up at night.
I think I suffered from IC most of my life. Even as a teenager, I needed to find a bathroom much more frequently than my friends and it was most embarrassing. It got much worse when I reached menopause in my 40's. That is when the pain began and the frequency especially at night started. As I got older, symptoms got worse.
I did not find Dr. Evans until 2006. I was diagnosed with bladder cancer in Jan. 2008 and had my surgery in Sept. 2008. Since then, all my tests have shown me to be cancer free. Dr. Evans did not do my surgery. I went to Sloan Kettering in NYC because I wanted an experienced surgeon for the very complicated surgery I had.
Now I can enjoy all the foods I missed for some many years and also drink an occasional glass of red wine too.
I heard recently that there have been lots of changes in IC treatment and diagnosis. For me the gold standard was distention of the bladder and if the bladder "leaked" blood, you had IC. Now I hear that they don't even call it IC anymore. What is the path your doctor is following now?
Nancy
Hi Nancy,
Thank you for your nice note. I am happy that you are free from your cancer, pain and can eat again normally. I guess like you said, yours was a no brainer, as you needed to sleep through the night. If it gets to the point where you were, you just have to do what is right for you. I didn't know all those options were available. Thanks for explaining that. My doctor is treating me with Elmiron, which I have been on for about four months, Atarax for about a month now. I also take a natural supplement called Cystoprotek and Oxycodone for pain. If I don't eat anything I am not too bad. But like you, I always had an overactive bladder, and a lot of infections. Did you have infections? They say that could be a cause of it. I kept going to the doctor begging for antibiotics, and for months, a girl at the doctors office would just call them in. When I asked to go to a urologist, it took her three months to get the referral to me, so I suffered for a lot longer than I needed to. I also take Librax for spasms, baking soda in water, hot baths, heating pad and I drink a lot of Fiji water. I really watch my diet, as if I don't I am in extreme pain. BUT today, I tried the cold brewing of the coffee, and it seems to not bother me as much. This is huge. ALSO, I had asked a naturopath sometime ago what I could take that would make my urine less acidic. He gave me something called Buffer PH, and I took a few, and then got scared about messing with my body's PH, so I stopped. Just for the heck of it, I took some yesterday and today, and I feel almost NORMAL. I even had a glass of white wine at dinner (with Prelief and prayers first), but I am ok. Maybe that is helping keep the urine more alkaline, and it is not as irritating. This is just what I think. One more question, sorry. How did they find your cancer? Why didn't they find it in 2006? I have always been afraid of bladder cancer. I think the diet sodas that I drank for years didn't help. Also you mentioned that it got worse in your 40's and with menopause. That might be because of the hormones, as it gets horrifying before my period. I couldn't even stand to use a tampon. That is when you just want to cut your head off, that wouldn't hurt as bad. Thanks for your time and helpfulness, Nancy! Regards, Holly
Holly,
When I took only Elmiron, it did not do me any good. My first urologist prescribed it in 1994. I took it for a year but it was so expensive, annoying to take as you know because it must be an empty stomach, and I found no improvement. I went to a couple urologists and never found any relief so I just gave up on them and decided that I must learn to live with it. I managed the best I could for many years but began to get even worse in 2005. Now I know that it was the cancer making it worse. I learned about Dr. Evans through a nurse at a hospital when I was having carpal tunnel surgery. It was a 200 mile one way drive for me but worth it because he combined the elmiron with elavil and the antihistamine that I have forgotten the name of. As I told you, it helped but did not cure me.
When Dr. Evans did the distention in 2006 he also took a biospy. His pathologist did not detect any cancer. However when I went to Sloan Kettering, they redid those biospies with their pathologists and found that cancer cells were there then. I since have found out that pathologists are WRONG 40% of the time. Pathology is more of an opinion than a real science. Scary, isn't it?
Blood in the urine is the most common symptom of bladder cancer. That is how I discovered mine too. It scared me to death and I went to the ER who said that I probably did have cancer and told me to get to my urologist as soon as possible. Dr. Evans did a cystoscope in his office which is looking directly into the bladder with a light. It is like being catherized. It would not hurt much if you did not have IC but water must be put in the bladder too to stretch it out to see into the folds and it just about killed me. I had it done 3 times and still almost scream just thinking about it.
He found 4 tumors and I had them removed by a TURBT which is cutting them out under anesthesia. Since my tumors had not spread, I first tried a treatment called BCG, another long story which I won't go into now, for 15 weeks but the tumors came back and I had my bladder removed.
Other symptoms of bladder cancer are frequency and burning but I always had those and though they became worse, I just thought it was the IC.
I see you are from Florida. I was born and raised in Florida but moved to NC when I retired in 2001. I would suggest that you try and find a doctor that specializes in IC. The Interstitial Cystitis Association ICA has lists of doctors that they recommend. When I lived in Florida, there were several Florida doctors on the list. Maybe there is one near you. I wish I had gone to one then.
Hope I am helping you.
Nancy
Thank you so much for your very kind response, and for taking your time to help me. You are a very kind lady. Well, my mouth was hanging open as I read your message. I still can't believe you went through all you did. You got so frustrated with the doctors and no improvement that you tried to live with it?! I might have had this same thing (only not this bad or this long) back when I was 18 or 19. I had just gotten married, so the doctors thought I had "honeymoon cystitis". I too, like you, finally said FORGET THIS, and it finally did go away. They did Silver Nitrate (chemical cauterization I think) I don't think anything really helped. I think I am going to try the Elavil. Even if I do suffer from the adverse affects, at least I will know if it works or not. Today I got busy and did not eat all day until about an hour and a half ago. I was so starved, I stopped and bought a Fiji water and a bag of Fritos. I had maybe 1/3 cup full. I also ate a chicken sandwich that I always eat. NOW, I am in excruciating pain. Must be those darn Fritos! Either the SALT or preservatives, who knows, but that's what did it. I pretty much gave up shaking salt on things.
It worries me so much about the possibility of Bladder Cancer. I don't remember which doctor told me that they can do a urine test to determine that now. But like you said about Pathologists...Wrong 40% of the time! How dreadful! I have learned like you, you have to do your own research and get other opinions. I talked to the girl who runs the IC support group for the State of Florida, who is very very kind by the way. She had never heard of my doctor, but I liked him fine, as he told me I was the 3rd IC patient that he had seen that day. He was only 35, but he seemed knowledgeable, but you are right, I should probably see someone who specializes in that. I have to use my insurance though, and am limited. Yes, the Elmiron is so expensive! I don't know if it is helping me either. Johnson and Johnson who just took over the company that manufactures Elmiron has a foundation that will pay for the medication if you can't afford it. I ran out of coverage on my insurance, so they are providing me with 2 months' worth until my insurance kicks back in. I was so happy about that! It is annoying to take, as you basically can't eat all day! I have lost a considerable amount of weight. I get so sick of dang pears!
The lady from the IC support group told me to avoid the distentions if I could. She said it is so painful, and she knows of people that were still hurting terribly after three weeks!! I am in so much pain right now, I am going to try to lay down with the heating pad. I wish I could retire to NC! This place has too many people, no nature, and has become a concrete jungle with jillions of people driving cars. Were you in South Florida like me? Thanks so very much for your suppport. It means so much, I can't even tell you. Thanks again, Nancy.
Holly
Good Morning Holly,
I hope you are feeling better this morning. My pain would wax and then wane. It would get to the point that I thought that I could hardly stand it and then suddenly it would get better. Unless it was fruit or milk, I never could really confirm a connection between what I ate and my symptoms. The doctors seem to swear that it is some form of food allergy but I don't think so. Yes, certain foods do definitely aggravate it but I believe there is another cause. Because it is mostly women who are affected (But you won't believe this, my husband has it too, another long story which I will tell you soon-he doesn't have cancer though so not to scare you), I don't think there is a lot of research being done. It is amazing how many people I have met that have IC. It think it is much more common than reported and often not diagnosed.
Everything I read says that there is no greater percentage of people with IC getting bladder cancer than the general population. However, several people on the bladder cancer forum did have IC before their bladder cancer like me or did suffer from many UTI's. I thought I had bladder infections throughout my life and was given antibiotics but now I don't think I did. I think it was just the pain and burning of IC. Once in my early 20's I did have a severe UTI and I had blood in my urine. I read a book once that said that people with IC often went through at least one UTI with bloody urine. When I found the blood in my urine that was cancer, I did not think that it was a UTI because I did not have any of the other UTI symptoms. Another thing that happened to me that is common for IC patients is what happened when I had gallbladder surgery in 1986, the old fashioned kind where I had a 10" incision. After my surgery, I had the constant need to pee along with the pain and burning that I later experienced with menopause. I finally had to just lay on the bed pan because I had to pee every 5 minutes. Major surgery can kick in the IC. After a couple of days, these severe problems went away and did not return until 1994 although I always had much more frequent urination than the average person.
The antihistamine that Dr. Evans prescribed is hydroxyzine hydrochloride. He told me that Elmiron, Elavil, and this drug must all be taken together to get the max benefit. My husband's doctor also prescribed the combination of these drugs. My insurance would only pay up to $2000 a year and I was left to foot the bill for the rest of it. I found out that I could order from Canada and get them at more than 1/2 the price. Of course you can't do this when the insurance is paying but if it comes out of your pocket, it certainly helps. Glad to hear that you are getting some help. Those pills are outrageous!!
I lived in Central Florida between Tampa and Orlando. I was born in Plant City and raised there. I was a school teacher and taught school in Ft. Meade and lived in Bartow. Funny, in my 53 years of living in Florida, I only experienced one hurricane. After moving here, Waynesville, NC, in 2001, Florida began having all those storms. In 2004, the center of 3 hurricanes came through Bartow. We had beautiful trees in our yard, it was like a park, and the storms blew them all down. Nothing left. I don't know if any damaged the house or not as we had sold it.
Support groups can be so helpful. I have found this out with my cancer. The people on the bladder cancer site here at Inspire have supported and comforted me along with giving me the information I needed to win this battle.
Hugs,
Nancy
Hi Nancy! Sorry I am just getting back to you. I went up north for Christmas and to spend time with my mom and dad, as my dad broke his hip. I guess my problems seem like nothing when you compare that anguish.
I hope you had a nice holiday with your family. I am sorry to hear your husband has this now! They say that alot of men that get diagnosed with prostatitis, is really IC, they are just now figuring that out. I have some good news Nancy! I visited a Health Food Store here a few days ago and the man helped me so much I want to tell everybody! I am going to make a post also, because it is almost a miracle. Here is the story.
A few months ago I went in there and asked him (I have been in a few times before, and know this man's great reputation for 22 yrs.) and I had asked him for something to help make my urine less acidic. He sold me some stuff called Buffer PH. I tried it, but wondered if I really should be messing with my own PH balance, so I took it sporadically. On this day, he said he wished that I would have told him that I have been in so much pain. He said he had something way better than Oxycodone. I thought, oh yea, right. What is better than that for pain?? He gave me a sample bottle that had four pills in it. It is a mixture of herbs; Horsetail, Stinging Nettle, Garlic and Celery. I went home, armed with a few new things to try. I was burning real bad while laying in bed that night, so I said ok, let's try it. He told me that within two hours my pain would be gone. I waited in agony that full two hours. Do you know what happened? It took it away! It just stopped!! It is made in Columbia, and works as an anti inflammatory, in a natural way. It is called Reuma-Art, made by Full Life. It is also very good for arthritis pain, fibromyalgia, migraines, and more. I have been using it for four days, and I feel so much better! In addition to my bladder, I was feeling so achy in the morning that I had to get out of bed. I went out and bought a new memory foam topper, thinking that is what I needed. Since taking that Reuma-Art, I don't have those aches anymore either!! It is truly amazing, and I swear I wouldn't believe it unless I tested it out myself. He also gave me a roll of PH testing tape, and I am monitoring the PH of my urine, and if it is acidic, I take two of the Buffer PH. It makes it so much easier to hold my urine, as it is not burning like fire. He also talked to me about Apple Cider Vinegar (the RAW unfiltered organic kind, made by BRAGG--The distilled kind does not work, as in the distilling process, the enzymes are killed.) This has sediment at the bottom, and is very pungeant. I don't mind it, as I like the taste. Anyway, it is good for probably over 1000 ailments!! I bought a book, and read for myself, and saw testimonials from Jack LaLanne, Clint Eastwood, JCPenney and more. People got cured from ailments they had all their lives. The BRAGG family are the pioneers of the Health Movement, and are the nutritionists to the Hollywood Stars. So, I am able to eat a salad again with olive oil and this vinegar!! I asked him why I could have the vinegar, as it seems acidic as heck. He said the body recognizes it as ALKALINE! So, I am enjoying that a lot, and feeling sooooooo much better. I can't wait to pass on this information, as I have not been able to control the pain with anything except the Oxycodone. This is indeed a miracle, isn't it??? I wish you could have known about it. But, maybe it would help your husband. This store that I use ships all over, so if you can't find it, we can order it from him. After all of my experience with this, I am thinking that the whole thing might be caused by having an acidic PH body!! It makes sense, doesn't it?
I appreciate your nice letter very much. You are a very nice friend to me, and also to others. You have been through so much, but still have room in your heart to help others. That is rare.
I noticed you said that most IC patients had at least one UTI with blood in the urine. Well, I guess that includes me too. Isn't that odd? Also, I am taking that antihistamine Atarax (Hydroxyzine) and still the Elmiron. It is hard to watch the food intake, as some things I have to take with food, and others an empty stomach. It is a challenge, but it is so nice not to be burning all the time. Thanks again for your nice note, and I am sorry I can't write more at this time, but I am still underwater from my trip. But I wanted to at least acknowledge your letter. I hope we can talk more later. Thanks for all your support! Love, Holly
You can try lemonade. Or start your day with a glass of warm water and a lemon squeezed into it. For years I had interstitial cystitis and kidney pain. Apparently, my urine was too alkaline.
Hope this helps in addition to advice above.
karen
Karen,
Thanks for your note. I am really confused now. Lemon juice kills my bladder. I cheat and use mayo now and then, but I pay. What happened to you that you found out that your urine was too alkaline? Why, if you know, did your urine become too alkaline? I thought most people had a problem with urine being too acidic? I feel better using the PH Buffer, keeping my urine at around 7.0. It is hard to acheive that PH, but when I really make an effort, I feel much better. Thanks for your reply. Holly
Hi Holly,
Lemonade would have killed me!! Orange juice nearly did. I lived in Florida and had my own wonderful tree in my backyard and I would juice them. It tasted so good until I realized what I was doing to myself.
Thanks for the info on natural medicine. My husband is into alternative medicine and reads lots on it. He actually has horsetail, garlic, and stinging nettle in his medicine chest. He has been taking it for his prostate but I don't think on a regular basis. I let him read your post and he said good for her. There are supplements that can help. I tried some for my arthritis but they don't seem to help me.
I am happy to hear that you are doing better. Thanks for the information.
Hugs,
Nancy
Thanks! Any new food pairing ideas would be great! Are you going to post a link about her cookbook, or should I call your "hotline" I can do that as well. Thanks again!! Holly
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