what could heal interstitial cystitis???

[butterfly79]

I was wondering where I could post this so I thought maybe here.
I want to ask a question that other members might benefit from also. I would like to know if there are people out there who have healed from interstitial cystitis, what worked?
I am desperately seeking a cure, anything!!!

if you have healed from interstitial cystitis what did the healing?
what worked for you, was it a drug? a herbal remedy?
aromatherapy? physical activity? positive thinking?

I was on elmiron when I was first diagnosed with interstitial cystitis , and it just made my hair fall out in big globs but did nothing for my ic :(

[sleepyangel30]

i sure wish i could answer your question about healing ic. well i believe eatting right and cutting out all the stress can improve your ic. my ic has improved so much and i'm very happy. i feel almost normal again. i stopped dwelling on ic so much and eatting right that is why i'm feeling better. i went from going every 5 mins to the bathroom to every 2 or 3 hours. keeping my faith in god keeps me going. i know i will overcome this disease so can you. i'm always thinking of the postive not the negative. When we praise we raise:angel:

[Calli]

^Very good that you feel better! 3 hours, eh???

But what should the rest of us do who do not believe in God?

Please do not feel offended, its just a question. You just seem to mention his/hers name so much it got stuck in my eyes and I had to ask.

[sleepyangel30]

oh cali i wish i can answer your question about the god part. its very hard to answer. all i can say is avoid foods that irritates your bladder and don't dwell on ic so much. dwelling on it can make it much worse.

[Katrina]

Well Calli...as far as that goes I think everyone needs to find peace in someway....if that is through friends, or an inner peace, or through God, or in a marriage, or their children.....something ....I hope that helps.....with the God question.



butterfly ...I would do a search in this section and see what has helped others. I know diet and Prelief have helped quite a few.

Unfortunatly some successes turn out to not last forever....but a few years is great if the alternative is IC is during those years right?

http://www.ic-network.com/forum/showthread.php?s=&threadid=6133

http://www.ic-network.com/forum/showthread.php?s=&threadid=6098

http://www.ic-network.com/forum/showthread.php?s=&threadid=611



http://www.ic-network.com/forum/showthread.php?s=&threadid=6054

http://www.ic-network.com/forum/showthread.php?s=&threadid=624

http://www.ic-network.com/forum/showthread.php?s=&threadid=612

http://www.ic-network.com/forum/showthread.php?s=&threadid=640

http://www.ic-network.com/forum/showthread.php?s=&threadid=622

http://www.ic-network.com/forum/showthread.php?s=&threadid=610

There is a lot of things to try there....and sometimes it takes a combination of things to feel good.....so we keep trying things....sometimes we tell our doctors about what we learn here (because this info can be way ahead of the docs sometimes) and with alternatives and combine treatment we get under control.....Good luck on your research....hope you find what works for you.



:kiss:

[Dixiefireball]

What has helped me get some better was heparin and the marcaine treatments i take at home one to three times a day as needed.
even tho i still have chornic IC. all the pin point bleeding is gone from my bladder.
that has helped me alot.
i still have alot of the systom but find that i can eat more. I do have less pain when i dont have an infection.

sending you hugs and prayers
Rhonda

P.S
I'm not saying that the heparin treatment will help you it just something that helped me.

[Martha13]

I was successful in treating my IC-diagnosed symptoms by using a broth culture to find the bacteria and the right antibiotic. Traditional culturing does not find all kinds of bacteria - some are slow growing and harder to culture.

Martha

[curlycue]

What helped me a whole lot was a series of Bactrim and Cipro. It helped me for 5 yrs wich was great cuz for a while I thought I had cured this horrible condition? Suprise It came back I guess it was wish full thinking? I have been on Elmiron for over a year and it has helped alot and I also did DMSO treatmenents. I hope that you find your THING that will work for you. :hi:

[ICNDonna]

One time I went two whole years in remission. I knew it would eventually come back, but it was sure nice for that time. Some have remissions that can last for five or ten years.

I do very well with hydrodistentions as needed along with DMSO instillations.

Donna

[butterfly79]

I'm sending an internet hug to everyone who replied to my post ((hugs))
all of you have been through so much,
it's not fair how we have to endure this illness,
we are all sweet people who would never harm a fly so why do we have so much pain? :(
Right now I have no idea what would work for me,
I'm so impatient and tired already with battling this illness :(
I will take all of your advice and try to see what I can do for myself,
thanks for responding to my post, I just wanted you all to know how much I appreciate your advice and support, Heather

[curlycue]

Heather I hope you find what ever works for you? I have come to find out that not everything your try works for everyone? That was the mistake I made I kept on asking people what worked for you and then I would try it and I was so angry cuz it did not work for me. I finally did what I thought worked for me and I found my Cocktail of pills is what I calle them

Good Luck I will be :pray: for you

[Rowena]

I am 54 years old, have been diagnosed with IC for nearly nine years. Whild I have read of others who dealt with flares, I was one who prayed for remissions. Bathroom trips every 12 to 15 minutes, burning and as a result, some heavy depression. I realize that IC does go into unexplained remissions from time to time but this is my story.

I had had all the traditional treatments,(all the meds. including elmiron, dmso, 6 bladder distensions, many antidepressants) seen 6 different urologist, one of whom said that I was end stage and th only option was to remove the bladder. My bladder is very small (3 oz on a good day) I was finally sent to see a pain specialist who put me on methadone and fentanyl. These worked better than anything else had but not really. They just made me so drunk I did not care how much pain I was in. Finally I agreed to have the interstim surgery. Was referred to Pain specialist in Houston, TX who was sure I also had vulvadynia so he referred me to another Pain specialist who does bio-feedback specifically for this condition.

After three surgeries for the interstem (I had some complications and adhesions) the bio-feedback dr. gave me a sample of something she had got at a convention the weekend before. The name of the product was cystoprotek developed by Algonot out of Florida. After three weeks on the product, I could tell a difference, and after a month, I felt like life was worth living again!

I've talked to several people with IC and none of them had symptoms a severe as mine and they had all been able to get some relief by some med that I had tried and did not work for me. Algonot has a web site: www.algonot.com. Check it out and I hope it works for you.

I have to say that I am a Christian and I do believe that the many many prayers that were being lifted up for me were answered in this way and I believe that all healing comes from God. He gets the praise! I wish I could help every single person with IC and I hope this works for you.
:pray:
Rowena

[ICNDonna]

There's also an Algonot Plus link at the top of this page.

:)
Donna

[crystilclear]

I am still trying to find the right treatments for me. I've tried DMSO treatments, and I'm on Elmiron, Nulev, and Elivil, also Prilosec, medicines for allergies and other unrelated issues. I am also a christian and my faith helps me a lot. I know I will get through this with His help. It is just overwhelming sometimes. Why can't there be one treatment for everyone? It is so irritating because everything is a guess. Well anyways at least there are treatment options. Think about the poor people who came before us who were treated like hysterical mental patients by thier doctors and sometimes by thier own families! Atleast we have a name for this and that there are options. I hope you find what will work for you and that you will find it soon. Take care - Chris

[sleepyangel30]

I know someone that is doing very well. She is on a strick alkaline diet. She had a tiny bladder and used to pee 40 or 50cc's and she is now peeing 350cc's at a time. It take wil power to stick to a alkaline diet. I have been doing so well myself. I stop eatting so many things that irriated my small bladder even more. I'm thinking about trying the alkaline diet myself. I can tell my bladder size is improving though more urine is comming out at first I was peeing just a few drops going every 5 mins. But not anymore since I have my IC under control now.

[Rowena]

Chris,
Since you are a Christian I will say this. I've had to remember that the Bible says we are fearfully and wonderfully made. To me that means none of us are exactly the same. And the Drs. are doing the very best they can, but they did not make the human body so they cannot always fix it . I thank God for Drs. and keep them in my prayers also. :pray:

[lotsofgirls]

I am slowly getting better through a whole pile of things. RIMSO (DMSO cocktail) has helped alot with the urgency, pelvic floor therapy has helped with the retention, the IC diet which has taken me quite awhile to become strict about, and neurontin to knock back the pain. I can feel really good for part of each day, but I have to practice "pacing" because I can overdo it and then my pain acts up in a hurry.

I am thinking of trying cystoprotek and increasing my elmiron dosage over the summer to see if I gain anything from that.

Cath

[Rowena]

I was still taking elmiron when I started cystoprotek and I could not tell it was helping at all. I've taken it for two year all together. They tell you to take a smaller dose of cystoprotek if you are on elmiron so I quit the elmiron. I do take neurontin, celexa, and clonazapam. But I am hoping to get off those prescriptions. We'll see.

Rowena:pray:

[ICLori]

Hi I hope you feel better soon.

I was thinking for those who could not tolerate Elmiron, perhaps a natural remedy to try (not sure how effective it is, no studies that I know of have ever been done) is spirulina. The reason I think maybe it would be worth it to try, is supposedly it is that same GAG layer stuff as Elmiron only maybe it doesn't cause the side effects. Plus it's cheap as can be at the health food store. I got some myself but I can't tell it's helping me because I also take Elmiron so don't know which is helping you know?

I think that if I couldn't tolerate Elmiron (I am so lucky in that I can - sometimes it gives me nausea and diarrhea but I can handle those, no problem) I would try this spirulina stuff. In theory it would seem like it would work the same way as Elmiron.

I got interested in spirulina when I read this on the internet:

########################

Elmiron is a drug that's being touted as a great advance. I've certainly had some disappointing results with that so I'm not big into it, but okay, and it may work for some people. And then interesting a drug that can be bought just over the counter, you know in kind of health food situations, is a thing called spirulina, which is an algae based material. And this woman who was a patient when I was in the US absolutely swore by it and was trying to get us to conduct a clinical trial. What Elmiron does is helps to replace, well this is the theory anyway, the protective layer on the bladder lining called glycose amino-glycan. And spirulina is a natural occurring glycose amino-glycan. But I think that it'll be an area of significant advance over the next few years, and it's the sort of thing where people for years weren't taken seriously and if you start taking people seriously, often the disorder gets the sort of attention it deserves in terms of research funding and so forth, and you find good antidotes.


Norman Swan: Dr Helen O'Connell is a consultant urologist at the Royal Melbourne Hospital.

[crystilclear]

Rowena,
I am thnakful for doctors as well. I was commenting on how much things have changed. In doing some research and from a couple stories I read here since there weren't the tests and medical advances back then many women were thought to be mental cases because no medical reason could be found for thier symptoms. I am luckier to be alive now when there are so many medical advances and treatments that once weren't available. I completely agree that people are different and are treated differently according to thier indivisual cases. I was saying it would be easier if one treatment would work for us all. It is hard trying to find the right combination. I am not looking for someone to fix me. I've had some really bad experiences with docotrs. Not to say that there aren't wonderful doctors out there that I have met as well. It has been a really hard ordeal for me just getting a diagnosis after many years of different doctors suggesting it was merely PMS, a small bladder, and a depression problem. For me this has been a sore subject because I have been treated badly for contiuing to push for answers from my doctors. Everyone passes me off to someone else and it can be very stressful. We are all human and none of us have all the answers. It is my own personal experience that I am speaking of and I'm not assuming all doctors are like this. Sorry if you got the wrong immpression. I hope we all find the right treatments and that oneday a cure would be found for all of us. I hope everyone has a wonderful day today. :( My allergies are acting up really bad anyone else? Take care - Chris

[ICNDonna]

I did a quick search on the quackwatch web site and found information about spirulina at http://www.quackwatch.org/search/webglimpse.cgi?ARCHID_1=1&query=spirulina&rankby=DEFAULT&errors=0&age=&maxfiles=50&maxlines=30&maxchars=10000&limit=on&cache=yes

My suggestion would be to read this information before spending your money.

Donna

[Rowena]

Chris,
I was not offended by your comments re: drs. Sorry if I sounded defensive. I've been to some real lulus too.lol Hope you get to feeling better real soon. Like I've already crowed...cystoprotek has worked wonders for me and I'm going out right now to excercise for the third time in a year!

Rowena:pray:

[Rowena]

ICLori,
I tried spirulina(sp). Sorry to say, it did nothing for me.
Hope you find something soon.

Rowena:pray:

[ICLori]

Spirulina was debunked as a diet food, not as an IC helper...but I get your point anyhow.

It's just that when nothing works for so many of us, we are desperate to try anything that might hold promise.

Blessings, Lori

P.S. Even if spirulina worked exactly as well as Elmiron, it still wouldn't help the majority of IC patients - the latest trials were discontinued with the Atarax/Elmiron combo because this combo of drugs proved to be not statistically significantly better than placebo....maybe other drug trials of this drug will have different, better results.

But even if Elmiron itself were offered OTC, it would be a waste of money for the majority of IC'ers trying it...at least according to the clinical trials which I trust more than anecdotal evidence.

[PikkuMyy]

I'm currently being helped by trying to stick to the diet and by taking 50 mg of Macrobid per day. I know the antibiotics aren't good for long term but I've got my life back for right now, at least. When I'm done with 3 months, I hope the Dr. will do a cysto/hydro and figure out a better long term remedy for me.

[Rowena]

I've never seen a dr. who wanted to try antibiotics (and I've seen four Urologists, five internists, and three pain specialist) But everything else that was tried failed or made it worse. Until I got on the Algonot.

Feeling Wonderful in Corpus Christi, TX:thumbsup:
Rowena Vokurka:pray:

[heiwalove]

can antibiotics help even if you don't have bacteria???

[Rowena]

Heiwalove,
Like I said, I've never been offered any antibiotics, so I can't say. I did know of a woman in Bryan, TX., who said she was treated with large doses of penecillen for a long period of time and was healed. It seems the Drs. don't really know exactly what to do nor do they agree on one treatment to cure IC. We are stuck in one of those conditions where the Drs. are still experimenting and we just have to keep trying until we find a Dr. we trust and then go with his/her treatment. I was very hopeful about elmiron, but got no help whatsoever...more disapointment! I hope you find a Dr. and a treatment soon that works for you.

Rowena
:pray:

[butterfly79]

I want to thank everyone for replying to my post,
I will try to absorb all of your advice and take from it what will work best for me,
I hope that everyone here benefited from reading these posts to learn possible new treatments and shed a little hope on an otherwise sad illness,
thanks for all being so sweet here
((Hugs))
take care of yourselves!!
Heather

[sleepyangel30]

You are welcome butter

[Yellow Tail]

After a few days of switching to an alkaline-forming diet (basically 80% fruits & veggies, 20% other stuff, no processed foods) I felt so much better. I'm a week into it and truly feel cured. I have energy, no bloat, no pain, better sex. I eat tomatos every day. I eat apples. I would suggest that every person with IC research alkaline-forming diets. There are many studies, each a bit different. I am shocked at the success after I felt so hopeless. My organic foods might cost a bit more, but it's cheaper than the Elmiron I was on and now I'm actually productive every day. I'm PMS and still feel great!

[Rowena]

Help! Quick! I am really scared. I have started urinating blood clots. I think I have heard of this before but, I'm not sure. I've been diagnosed with IC for over eight years and have had many many different pains and procedures and symptoms. Urinating blood clots is not something that has ever happened to me before. Since this is Sunday and tomorrow is and holliday, I don't know if I should panic and go to a hospital.

[Yellow Tail]

Rowena, I did a quick search and found this:
http://www.emedicinehealth.com/articles/8828-2.asp

"When to Seek Medical Care

Any time you have blood in the urine or other symptoms of a urinary tract disease, call your health care provider. If you cannot get in touch with your provider or get an appointment that day, go to a hospital emergency department.

Any time you have the combination of blood in the urine, fever, and flank pain, you should seek emergency medical care, because this may represent a severe infection in your kidney."

[ICNDonna]

Rowena: Please call your doctor. You may have an infection --- if you do, waiting until the office is open will give the infection too much time to grow. And if you can't reach your doctor or the doctor on call for him, I suggest you go an urgent care center or ER.

Warm healing thoughts,
Donna

[Rowena]

Thanks for your immediate answers. I will take your advice. I'll let you know how it turns out.

[Rowena]

Donna and Yellow Tail,
I just got back from the ER and guess what?...I did have an infection. In the eight years that I have had IC, I have never had an infection. The Dr. put me on cipro and said I should be better in a day or two. Next time I will be more carefull. Thanks for being there for me.

Lots of love and prayers

[curlycue]

I am glad to hear that everything is on its way to being ok.
Please take care of your self with this IC.

[sweettabby]

I know Im not healed per say but I do well with DMSO treatments and urised plus I take the cysto pak I think it is. Like Donna said some have very long remissions. Im like her. I had a two year reprieve which was wonderful, but I do pretty well now. I also try to watch what I eat but not much. Only if Im in a bad flare. Most foods dont bother me at all. However, I do drink tons of water and not alot of soda.

[hannahmae]

Hi, I just read about the alkaline-fomring diet...what do you think of it? It sounds as though it could be worth a try but im not sure about oranges being considered alkaline because they arent converted into acids by the body.....

Im interested in your thoughts/experience with this, or other diets.....

H

[Yellow Tail]

hannahmae - you can try the diet without citrus fruits. i believe the book that applies the diet to IC suggests starting with a minimal diet, then once your body is less acidic to add other foods. there is some differing info out there about what's alkaline forming and what's acid forming. but in general avoiding processed foods certainly can't do you any harm - neither can eating a wide variety of fruits/veggies.

[vm]

Eating a wide variety of fruits can actually be harmful to someone with IC in terms of causing a flare. Be very careful if you try a lot of fruits, Hannah. I suggest you check out the diet section of the ICN Patient Handbook. It has very good information on diet and various food groups: www.ic-network.com/handbook :)

[ICNDonna]

Please don't put yourself on a diet that includes things that are listed in the Patient Handbook as potential problem foods.

The best advice I have in this area is to talk with your doctor before beginning any of the "fad" diets.

Warm healing thoughts,
Donna

[mayray518]

Yeah always get tested for an infection. I was without infection for so long (when they finally diagnosed IC) that I thought I would never have one. One time I had IC, plus an infection, but couldnt tell, and the doc didnt catch it for 3 months. I was put on CIPRO and by that time the elavil had kicked in for the IC and I felt great. I always have a test for infection anytime anything feels like it is acting up.

[mayray518]

:dogrun: :dogrun: Yeah always get tested for an infection. I was without infection for so long (when they finally diagnosed IC) that I thought I would never have one. One time I had IC, plus an infection, but couldnt tell, and the doc didnt catch it for 3 months. I was put on CIPRO and by that time the elavil had kicked in for the IC and I felt great. I always have a test for infection anytime anything feels like it is acting up. :dogrun:

[GLOW]

undefinedMAGENTA^Very good that you feel better! 3 hours, eh???

But what should the rest of us do who do not believe in God?

Please do not feel offended, its just a question. You just seem to mention his/hers name so much it got stuck in my eyes and I had to ask.
:hi: HI-KNOWING HIM HAS BEEN MY HIGHEST JOY. HE'S KNOWN AS JEHOVAH RAPHA-OUR HEALER. I HAD ASTHMA FOR 7 YRS. IT WAS HORRIBLE. I PRAYED FOR HEALING THEN ONE DAY HE DID & NOW I DON'T HAVE ASTHMA. AND SO I SHARE MY STORY. HEALING COMES IN DIFFERENT WAYS. DR'S & MEDICINE IS ONE AVENUE...AND I AM THANKFUL FOR THEM. WITH IC, ELMIRON HAS HELPED SOME BUT NOT ENOUGH. ATARAX HELPS SOME. POLYCITRA K HAS HELPED ME. I'M NOT A DR..JUST SHARING MY EXPERIENCE. THE ICA IS A "GREAT" SITE FOR GETTING INFO. ABOUT IC. HOPE U FIND WHAT U R LOOKING FOR. GLOW

[Raelyn]

I have been helped immensely by the alkaline diet. It requires discipline and lots of natural foods. Last spring I didn't want to leave the house I was so miserable and I began taking glucosamine, chrondroitin and MSM and following an alkaline diet. I have not gone to the citrus fruits but I did have a slice of tomato several times this summer with no problem. I eat a variety of melon, ripe (with the spots) bananas, grapes, dates, figs, potatoes, squash, cabbage, sprouted peas and lentils and a good variety of fresh or frozen vegetables. I spent many hours last spring searching the internet and library for information. I have not taken any of the prescription drugs for IC. When a prescription for Elavil came the literature enclosed was so scary I threw the pills away. I have taken a gotu kola tablet daily in its place. I have felt that the thing most helpful to me was to purchase the ph testing tape so I know whether my urine is acid or alkaline. I notice that if I am very alkaline I have pain with that too but I tell myself I am in a healing mode. We have sold our home this summer, bought a new one and moved, and my father was in a nursing home and passed away two weeks ago so I have had my share of stress this summer and still am doing well. If I am eating out my standard meal is a baked potato and a tossed salad with assortd lettuce, carrots and cukes. Perhaps a serving of bread with it. I wish you well.

[Rowena]

Please excuse my ignorance, but is a cuke a cucumber? I cannot think of any other vegetable called a cuke.

Rowena

[curlycue]

You go girl I am glad that the diet worked for you .

[the_lost_lenore]

Cystoprotek/algonot rocks my socks. It has done more for improving my life than the Elmiron has. As a plus, the ingredients are also good for my arthritis.