The comments below reflect the personal experiences and opinions of readers and do not represent medical advice or the views of this website. The information shared has not been evaluated by the FDA and is not intended to diagnose, treat, or prevent any disease or health condition. Always consult a qualified healthcare professional for medical concerns.
Acidophilus
Posted by Chevygirl (Tuakau, Franklin, New Zealand, New Zealand) on 01/21/2012
★★★★★
Hi Chrissie, I was told to take acidophilus tablets for IC pain and I must admit, I was pretty skeptical about them working, but I can tell you, they worked within an hour!! I was blown away!
The weird thing was however, I bought them from right where you are at a drug store in Anaheim. The bottle is labeled 'Henry's', freeze dried acidophilus. When they had run out I bought more from our local health shop (in New Zealand) and to my disdain, they didn't work!
I have no explanation for this, so I will have to get my brother, who lives in Anaheim, to send me some more, as those ones definitely did without fail!!
Good luck with this, keep us posted!
Chevygirl, NZ
Cinnamon
Posted by Ichater (Northern, California Usa) on 01/19/2012
★☆☆☆☆
Prior to the worst flare up in my life, I had already been taking cinnamon capsules daily for a year prior... So I don't think that cinnamon works for everyone. I was taking 1000 mg a day and I still had a flare up. :/
Baking Soda
Posted by Mary (Tucson, Az, United States) on 01/06/2012
★★★★★
I have had IC for 30 years. My main pain triggers are vinegar, lemon, citric acid, acidic foods, vitamin C, some of the B vitamins. I am unable to take any products with citrates, orotates, asporotates. The perfect remedy for me is 1/8 tsp. Baking soda (I use nonaluminum product from health store) mixed into very warm water. Usually pain subsides within the hour. If not, I take another 1/8 tsp. It is important to read labels carefully because many products contain triggers. My flare will occur within hours of eating a substance so I have learned that even small amounts of vinegar in mayonaise and salad dressing can be a problem. Before I reached menopause, hormones (I believe estrogen) were a trigger as well. That occurred at onset of menstrual cycle. An over the counter product for vaginal burning was very helpful to me at that time. It contained Benzocaine for numbing. I would only use for extreme pain though because it contains parabans, etc.
I learned these are common causes of flares at the IC website: Vitamin C, some B vitamins, the hormone Estrogen, acidic foods. Unfortunately, I suffered many years before I found what was helpful for my flares. Now I forget that I even have IC because I can treat it so easily. I'm hoping this will be helpful to someone.
Reader Feedback
Posted by Catherine (Halifax, Nova Scotia) on 12/15/2011
I had bladder surgery (cysto) and that is how my IC was diagnosed. I have had it for approx 15 years. I recently had another bladder stretching and now am getting an implant to help control the spasms. I am a Grade 3 and have tried everything to control or maintain the pain from IC.
Reader Feedback
Posted by Mary (Edina, Mn) on 12/02/2011
If you have tried everything, and you can't get relief, try what I have tried: It's a acidophilis product found online or in large health food stores. It contains:
Lactobacillus rhamnosus GR-1
Google these for the product. If you look under amazon for it, there are hundreds of Vaginial Bactriorosis stories, but also some on IC. So hey I bought a bottle and WOW was it helpful. Pain gone. Like fast. Except I still can't cheat on the diet. But I can sleep, and go in the car on long rides, etc. For anyone with pain: Here is the fastest route to use this product: Day 1 eat 2 in AM, and 2 in vaginal tract. Just push the capsules up there. They will disintegrate. Within one hour, the pain will go to about zero. Then eat 2 b4 bed, and 2 more vaginally, After that, eat 2-3 per day, and 2-3 vaginally (especially 2 b4 bedtime). Stools may get looser. Maintain at 1 to 2 per day per oriface. Must be refrigerated. Buy the 60 capsule bottle as it 's almost the same price as the 30 capsules. Not a cure, but insanely helpful. I've been on this stuff for 3 weeks. I was about to go crazy. I had tried everything over 5 yrs. Side effect: at 3 capsules/day vaginally, the vaginal fluid smells acidic. Almost like stale pee. But hey it was just a few days. After 3 weeks I still can't try new foods, as when I do, I must do a vanignal capsule to calm down my bladder, but I am not in pain after about 1 hr. Blessings, Mary
Chondroitin, Glucosamine, MSM
Posted by Mary (Hastings, Mn) on 11/23/2011
Update on this Glucosomine & Chondroitin: I found that when I take it, the Quercetin makes me VERY hot only at night. I tested this by just taking Quercetin. Same result. The heat radiates from my vagina! I am 48 yrs old, and having night flashes, but this is ridiculous. I had to quit the product. I had tried it for a few months and I wasn't gettting much sleep. I just got hotter and hotter. I hear it helps alot of other people though as stated by their testimonials on-line. I called the company, and they said that they had not had this complaint before. Maybe I will need to try another brand.
Gelatin
Posted by Lynne (Titusville, Pa) on 11/03/2011
Mel,
I was wondering if you noticed any stool discoloration with taking the gelatin, because I have noticed reddish coloring when going to restroom since starting the gelatin about 3 days ago.
Baking Soda, Peppermint Extract
Posted by Sharron (Grove, Ok Oklahoma) on 10/30/2011
★★★★★
I've been suffering a terrible flare of IC. Apparently, I've had it for years, although I just learned about it recently. I've adjusted my diet to eliminate all acidic type foods. Onions appear to have been a particularly bad thing for me, and I used to eat them all the time! Anyway, I'm still recovering from this flare -- it's been two weeks now that it's been bad. I came on the EC site about a week ago and read separate posts about peppermint tea and baking soda. Well, what I've discovered is that both of those things help me. However, what seems to help me best when I'm having a lot of pain and urgency is 1/2 teaspoon baking soda and a few drops of stevia extract mixed with either 7 drops of peppermint extract (not oil) OR a strong-brewed cup of peppermint (leaf) tea. Within minutes I'm feeling better. If it is during the night, I'm able to go back to sleep right away instead of laying awake with stabbing pain in my abdomen.
Additionally, I've lost 6 pounds in a week. I think it is related to all the inflammation that the IC was causing. I hope that it will continue!
I hope my little remedy will help others who are suffering. Thanks for a great site. I almost always come here first when I need a remedy for something.
Blessings!
Alkaline pH
Posted by Bobbie (Hartsville, Sc) on 10/23/2011
I read your post here and am interested, I've had IC in 2003- 04 for about a year, Sat before last it started back... I'm just sooo depressed about this and in pain most of the time. I've been through all that back then, and can't tolerate the idea of going through all that again.
We thought it my just be a regular UTI but now I'm thinking it''s IC back. Burning, pain, and urgency. Thanks, Bobbie.
DMSO
Posted by Lauren (Northern Ca, Usa) on 10/18/2011
Do you mean DMSO medically inserted into the bladder? Or cream applied to the area? I love DMSO and would love more info on how you used it.
Alkaline pH
Posted by Sandi (Clarksville, Tn) on 10/11/2011
I just read your post, even thought it was written about 2 years go. I hope that you are doing much better. Just wanted to let you know that you live very close to one of the best doctors in the country. Dr. Barry Jarnagin is absolutely awesome. Just Google his name and you will be very impressed. I cannot say enough great things about how wonderful he is. Not only did he help me get my IC under control, he also diagnosed a hernia that everyone else missed. Feel free to email me if you need to chat.
Multiple Remedies
Posted by Motek0844 (Calgary, Ab, Canada) on 10/05/2011
Elizabeth from Nashville, TN.. I have no clue how to e-mail you so I ask please send one e-mail to me so I can get the subject *5* product name mention by you to keep acid level in balance.
Thank you. Bless all of us and YES.. Each person has to find their own treatment since none is the same for all. I work on ACV, baking soda, lots and lots of veggies alkaline producing, very little acidic food no longer (hard this one), and a new product available taken over two days and it reduces the pain ONLY. Potassium Sodium. Only good for folks with no high blood pressure. Kidney could also be at stake taken it to often. But it does work.
Thank you for sharing it is confusing.. But I know I once have the yeast under control much already is established. I got this from to many month on antibiotic due to a bone infection which I got from a surgery. YUP. I was on heavy cocktail dosages of antibiotics for 8 month.. got through it with result now of IC.
Bless you all and Elizabeth thank you should you read this mail and letting me know about the name of product.
Boric Acid Suppositories
Posted by Mary (Hastings, Mn) on 09/15/2011
★★★★★
Boric acid capsels can be premade for emergencies and kept with you. I fill only to 1/2 full or I can get a burning sensation. I put them in my purse in case I flair and have to drive a long way, or fly on a plane all day. They can be inserted in any restroom really fast if you have your purse with you. I premake a few for if I can't sleep due to pain and urgency, and I want quick relief. Works in 15 min to 1/2 hr for me. Keep with the tampons in your purse. It can save a vacation, or a dinner out, that's for sure!
Reader Feedback
Posted by Sb From Jersey (Egg Harbor, New Jersey, Usa) on 09/13/2011
New here and hoping you all can help me sort this out. I've been to my general doctor, to my ob/gyn many times. Nothing seems to be wrong. I went to a uro, he sent me for a cat scan, bladder scope and potasium test ( need to go for these two). I have had symptoms since February. It started with 2 weeks of intense urgency right after relations. I have also been having a lot of tingling in the whole area, which comes and goes. Now it has been on and off with pain mainly around my urethera. But when I lay down at night it completely stops. Uro is suspecting IC. Do you have any suggestions? I've looked at the home remedy board, but there is so much to choose from. Please, where do I start?? thank so much for any help!!!
Reader Feedback
Posted by Renae (Mpls, Mn) on 09/08/2011
http://www.wellbladder.com/bladder_symptoms__gluten_sensitivity
Thought you wrote this. Looks like you (the author) wrote this. I will quote part from above: "
But there was a glimmer of hope from the small percentage of people who seemed to heal spontaneously through a holistic approach involving self-treatment, relaxation, stress reduction, and purposeful attention to diet. One of the food sensitivities mentioned frequently was gluten. Patients in support groups for disorders like IC and celiac disease, a hereditary, autoimmune form of gluten intolerance, self-reported that eliminating gluten helped resolve their bladder symptoms, and in many cases, it was the only "treatment" that made a significant difference. " Anyways it advertises your book and talks about gluten being a big cause! Thanks.
Aloe Vera
Posted by Renae (Hastings, Mn) on 09/02/2011
★☆☆☆☆
http://www.buzzle.com/articles/side-effects-of-using-aloe-vera.html
Don't listen to "aloe has no side effects" Not true.
I have tried the Harvest Aloe. Severe gas, gut ache. Not everyone can use it. They give you a sample of 6 pills for free. 1/8 th of one pill gives me severe problems. Can't use. I have a history of IBS. I eat no sugar, gluten, dairy, alcholol due to IBS.
Many people are helped according to their website. Not me.
Barley Milk
Posted by Renae (Hastings, Mn) on 09/02/2011
Reader Feedback
Posted by Penny (Hueytown, Al.) on 08/20/2011
Lonelyhearts from Jackson, Ms. I read your feedback about IC, which I have too, but you are the first person that I have found that water aggravates or starts the flare up. I have been telling my husband that and he cant hardly believe it. He as well as the doctors say water is good for your bladder. But I know when I drink over maybe a cup of water a day or even koolaid with water in it my bladder will start burning and thee goes a flare up. I can drink coke and like you said , thats crazy. I dont know what to do cause I know I need more water. Any solutions out there?
Chondroitin, Glucosamine, MSM
Posted by Mary (Hastings, Mn) on 08/16/2011
★★★★☆
Found a Glucosamine and Chondritan that doesn't bother my GI tract that much if taken w/food. It's sold at an IC site CystoP*****. Maybe it's because it's got Olive Kernal in it, which makes it more bio available. I take 4x per day (1 capsel per day) rather than twice per day (2 capsels per meal). Already see a small differance after 4 months. Constant flair is gone, and can have salty snacks and sometimes blueberries now. I had gone crazy w/blueberries over the last few yrs since getting this and I seem to have developed a problem w/them.
Multiple Remedies
Posted by Gail (Musquodoboit Harbour, Ns Canada) on 08/11/2011
Looking for name of drug store over-the-counter product you take to neutralize acid.
Thks for you info .... very helpful. gail
Multiple Remedies
Posted by Kimberly (Camas, Washington) on 08/04/2011
Hi! I was the other woman at the Anderson/Wise Clinic. I'm doing fantastic... On a trip to NYC. Thank you SOOOO much for recommending the Oxytrol patch. My doc gave me another version - a geletin that I put on every day. Oh my gosh... The frequent urination stopped within 48 hours. I was comfortable on the airplane and have had a wonderful trip. God bless you for suggesting it!
There are so many causes and treatments for IC that aren't being mentioned by people on this listserve. I would urge you all to read Wendy Cohen's The Better Bladder book (Amazon). Each of us is different but if you work through a list of possibilities, you can get well. Many of us have!
Kimberly in Camas, Washington
Aloe Vera
Posted by Nettie (Chicago, Il) on 07/29/2011
★★★★★
I have used a supplement from evenbetternow.com for my IC (I think it's called Buffer Ph). It has aloe vera in it and alkalizes your ph if you are acid, which was part of my problem. I tested my ph and was as acidic as one can get. Bad news and dangerous. I take 2 caps 3X per day on an empty stomach. I also take a multi-vitamin, vitamin D, Calcium, Magnesium, high dose Omega 3, probiotics and some supplements that my acupuncturist gave me. I get acupuncture once per week. It's been a life saver. Along with the IC, I also had problems with chronic UTI's, which I cured by taking Inner Defense capsules from the essential oil company, Youngliving. Before starting on the essential oils, I was taking antibiotics all the time and they were making me more and more sick. The ant-bacterial essential oils got me off of the antibiotic cycle and have helped to strengthen my immune system.
Multiple Remedies
Posted by Pam (Redding, Ca.) on 07/24/2011
If you have IC,
you do not have an active infection that causes it. I was diagnosed 23 years ago. All of the so called intrusive torture will not make it go away. An infection could occur because of the open damage in the bladder wall, but it is not an infection. I had every thing done to me, from the acid burnout, stretching, tens, lasers, & DMSO. I lived in horrible pain for three years to over come all of the damage caused by doctors. No doctor will ever touch my bladder again. The mild no acid diet, tums, baking soda all help the symptoms, but will not make it go away. Stop lower body weight work or bike riding or any movements that compromise the bladder until it can heal a bit. It is very slow to heal the wounds.
Amitriptyline or elival is an older anti depressant that has a pain relief element. It is safe to take and especially at night. I have been taking it for 23 year. The best thing I found that gave me back my life is an
OXYTROL patch. It is a smooth muscle relaxant and it stops the bladder from going into spasm. It is very important to learn relaxation techniques. You may need to destress your life as well.
I have had it under control for many years without any huge flareups. I just returned from a clinic that is for chronic pelvic pain. IC falls under that. I went for a problem with my pelvic floor muscles. You can find the info under The Wise-Anderson Protocal. The program came out of Stanford. The Urological Association has just come out will info on IC that suggests it is a muscle pain problem. The clinic teaches you how to do the work of healing your self. It is a long road, but pain is a great motovator. The books Dr. Wise has written are helpful, but the Trigger Point Release Therapy is amazing. Tim Sawyer is a fantastic Physical Therapist. He was taught by the original founder of Trigger Point release. Read all the info and listen to their videos. They may be very helpful. By the way there were 4 men and only two women at the clinic. I never realized that men suffered so badly from their version of IC. Good luck to all. You are not alone. There is hope.
Reader Feedback
Posted by Karen (Anderson, Mo) on 07/15/2011
Jo--I was diagnosed wih IC in Jan. Of 2007. I have found since that I had many food sensitivities that caused IC flair-ups. In addition to acidic foods, chocolate, caffeine, I am sensitive to corn, oats, most nuts and most cheeses. If I avoid these foods, I have little pain. The frequency, however, I have not resolved. I still get up an average of 10 times at night and struggle with insomnina as well. I will try your hot bath at night suggestion. Also, I use a product called Arthrosoothe that helps with the pain. I get it from Designs for Health; it's about $36 for a month's supply.
Let me know of your progress with this disease. It is a tough one. Maybe we can all help one another.
Alkaline pH
Posted by Renae (Mpls, Mn) on 07/12/2011
★★★★☆
Update: still have IC as a problem even w/calcium and mag. Not cured. Can't open up diet much, but constant pain gone. Took awhile to get the correct calcium to magnesium ratio. As I have fibro and that got bad (as did constipation) on just the calcium citrate (w/the little magnesium oxide that was in the capsel) so had to add more magnesium oxide , but adding too much caused diarrhea. After finetuning this I still need to move on to do more w/glucosamine and condritan, but have a hard time taking that due to gastro issues. I am going to try some "manesium citrate and ozide", together as I keep reading about how the citrate changes urine PH to alkaline.
Chondroitin, Glucosamine, MSM
Posted by Mary (Hastings, Mn) on 07/07/2011
Side effects for me are bad digestion, IBS. CAN"T take it. Also can't take that hyaluronic acid either (eyes feel like sand in them) Any other ideas to heal the GAG layer (glycosaminoglycan layer)?
Boric Acid Suppositories
Posted by Mary (Hastings, Mn) on 07/07/2011
It's something that dehydrates the tissues. I have noticed this, when I have done it. It will also burn if done too frequently. It is used for bugs. They lick it off their feet and they get dehydrated and die. I suggest to use in an emergency only.
Boric Acid Suppositories
Posted by Gloria (Yucca Valley, Ca) on 07/01/2011
Do all of you use boric acid, or is this a mistake, and you meant to say borax (which kills fungus?) I thought boric acid was poisonous.
Aloe Vera
Posted by Pinklight (New Orleans, Louisiana) on 06/16/2011
I am interested to know if anyone has used a special aloe vera formula for ic available from two particular companies that are online. These aloe capsules are formulated specifically and takes 2-3 months to cure, not treat ic. Both companies have the word "harvest" in them.
-Pinklight
Alkaline pH
Posted by Lisa (Hastings, Mn) on 06/16/2011
★★★★★
Yes. I agree. Calcium Citrate did the trick. And Fast. Pain gone almost right way and permanently. I can eat much larger variety after only a few days. Staying off citrus and tomato sauce because I don't want to push it, as I am back on low acid caffeinated coffee after only 2 wks and I am afraid to push it. I need the caffeine more to get to work. I am also back on chocolate. If I take it on an empty stomach though I get nauseous! I take 3 to 4 per day. If I take 4 I get dry lips though. PH of urine is VERY alkaline.
Reader Feedback
Posted by Lonelyhearts (Jackson, Ms) on 06/11/2011
I have had issues with my bladder since age 4. I had frequent accidents and infections that led to doctors doing numerous serguries. Once reaching puberty I no longer had severe bladder issues but numerous other issues from abnormal pap smears with pre cancer on the cervex, hormonal imbalances, and pregnancy mask. Was told I could probably never get pregnant. Many yeast infections and uti after any sexual intercourse being given an antibiotic pill to take afterwards everytime. Incontinence was always an issue and uncontrollable urination at times.
As I have gotten older I do have two beautiful girls and had to have c sections with both. After the first I was convinced there was a problem and Dr. did test after test and showed nothing. After my second child I was finally diagnosed with IC. I have had strep in my bladder leading to a hospital visit, finally got a bladder sling and hystorectomy to try to stop flair ups which has help not having a period anymore. But after the bladder surgery I didnt think I would ever heal. Numerous instilations and pain meds weeks and weeks of misery much worse that anything I had ever experiences. I was given the 10 or 12 medications and still had no releif and since stopping all meds the IC is better almost non existent. I can no longer take any antibiotics and very few over the counter meds without it causing a flair up and colitis landing me in the hospital numerous times. My Doctor will not give me anything anymore.
I've always had allergy to Citrus causing mouth ulcers headaches and swelling. Fruit is the only food that I can directly tell effects my bladder but tomatoes coffee and soft drinks don't seem to bother me but if I drink water I am miserable. (crazy Huh?)
Sex is my biggest issue now. I avoid it at all costs making my husband miserable. When I finally give in, I enjoy it painfree once more than once and its physically impossible due to the pain. I have a huge IC flair up that is unbareable for weeks.
I can drink baking soda and use mullein and marshmellow root to get it under control and lots of baths with tea tree oil and baking soda but it takes forever and my sweet husband is a mess worrying about me and then we go months and months.
Help! Any suggestions?
Alkaline pH
Posted by Renae (Mpls, Mn) on 06/05/2011
★★★★★
Calcium Citrate alkolizes urine while giving you calcium you need anyway. Search on Google " "Calcium citrate" "urine PH" " Plus you can put them in your purse. I use 4/day (The recomended dose), one per meal and 1 w/small snack b4 bed. (Purchase w/Magnesium in the pill also, or you can get constipated. ) Test w/ph paper if you like. Works like a charm, while providing what we need anyway-strong bones. I hear to always take calcium w/food for best absorption. 1st time I took them, I tested PH and wow very alkaline. Pain went way down. After taking for 3 weeks, I was pain free, but still on the IC diet, but starting to cheat a little with good results. (salty foods good now, I couldn't eat blueberries b4, can drink white wine now) Sleeping well (up 2x- was up to 10x), and able to wait to go for over 1.5 hrs now.
Apple Cider Vinegar and Hydrogen Peroxide Douche
Posted by Pinklight (New Orleans, Louisiana United States) on 05/21/2011
I am greatly interested in anyone who read about an equal parts Apple Cider Vinegar and hydrogen peroxide douche that reduced or cured ic. My issue is the frequent urination day and night. I tried this concoction today and it burned so badly I could not really do it. It may have been the Apple Cider Vinegar that caused the burning; I'm just not sure. Has anyone tried this? If so, did you end up having to dilute the recipe with water and it still worked? I'm anxious to know. Thanks for any replies! -Pinklight
Turmeric
Posted by Kristen (San Diego, Ca) on 05/21/2011
★★★★★
Hello.
I was just diagnosed with IC a couple days before my 30th birthday. I grew up with Bladder infections/UTI's, and was very upset to find out I had this chronic condition.
My pain was at a 10 all week long. I couldn't get out of bed, but to urinate. When I would urinate I would have to bite on a towel, the pain was so horrendous. I've been on a strong Opiate pain killer for the past two days, just so I can take a break from the agony.
I've been researching natural cures and started taking: Prelief (8 a day) and a Wild Pollen Suppliment that is suppose to help build up the bladder walls.
My friend is Indian, and I remember her telling me that her husband disolves Turmeric root into hot milk and drinks it every night.
So, last night I decided to not take my pain medication (took my last pill at 5pm and they last about 6 hours, max) and give the Tumeric an honest try.
I took one large root, and grinded it down to a powder in my coffee grinder. Warmed organic 2% milk just to the point of a boil, then mixed in the Turmeric powder, and drank it over 20 minutes.
I did not wake up once to urinate during the night (even on the pain meds I would get up every 3 hours). I woke up naturally at 6am, and I had no physical pain. I could get out of bed and stand up straight. When I went to urinate, I had a small amount of discomfort at the very end. NOTHING compared to what I've been going through.
Just the day before, when my pain meds would be wearing off, and I would urinate, the pain was worse than this morning, after the Turmeric, with no medication.
I hope and pray this continues to give me relief, and I hope it gives others relief. This has been the most miserable 2 weeks of my life.
Reader Feedback
Posted by Jo (Anchorage, Ak) on 05/18/2011
I have just had bladder distension & cysto and confirmed I have CI today. The urologist has put me on some temporary antibiotics and told me about Elmiron. I have done enough research on this drug not to consider it. As I have read in this blog, the medical profession does NOT know how it works. For those of you who found relief, I'm glad. I am choosing to go the natural remedy route first and your site has helped a great deal.
I have found a hot bath before bed helps with the spasms for me. I went from going to the bathroom 10 times a night to 1-3 times. For me this was a small miracle... it literally happened the first night.
From the research I have read about IC, I am not suprised I have it. I have had endometrosis, I have sjorgren's. Firbrolymalgia, arithritis, diabetes-ALL autoimmue related. I will read the books mentioned on this site and continue to learn as much as much as possible.
Thank you for your help and good luck to all of us!
Reader Feedback
Posted by Wendy Cohan Rn (Portland, Or) on 04/25/2011
This is in reply to Renae from Minneapolis. Nowhere in The Better Bladder Book do I say that 91% of IC patients have gluten intolerance. You are misquoting a study on a subset of psoriasis patients who tested positive for anti-gliadin antibodies, and of whom 91% then went on to see an improvement in their psoriasis symptoms. Figures on the percentage of IC patients who are both gluten intolerant and who improve on a gluten free diet range from 31% (the ICA survey) to 41% (the Baylor study, which has not yet been published). I'm glad you got well and are telling people about the book.
Reader Feedback
Posted by Renae (Minneapolis, Mn) on 04/20/2011
★★★★★
I FOUND THE ANSWER TO THIS NASTY IC DISEASE. There is a book called "The Better Bladder Book", written just this year. In it, it says that Gluten Intolerance is the problem for 91% of the people with IC. I had been off most Gluten already, but was still eating croutons and chicken, and fish that was breaded, etc. I bought a basic book on "Gluten Intolerance" and WOW. One month later, I feel great!!! I can go without straining!! I can go in the public restroom again. Wow!! I don't sit and wait, and wait to go. It is way less of a diet constriction to go gluten free than remove all the IC foods and feel like I'm left with nothing to eat. I am already not eating sugar (IBS-I use stevia instead) and no dairy (face breaks out) so eating is difficult already.
After only 2 weeks I was off Hydroxyzine HCL (a antihistime for the bladder). I was able to cope just fine. After one month, I still go 2-4 times per night, but feel great during the day. I can eat onions and tomatoes again. White wine. I need more time to reintroduce most IC trigger foods, but I believe I will be able to slowly bring them back into my diet over the next year. The book said that most people getting off Gluten will take awhile to get better. This depends on how long you were sick and how bad. I was 5 yrs and in the end was a 10 out of 10 for constant severe pain. Now I can drive long distances and go on airplanes. This is HUGE for me. I can drive or sit though church/seminars for 1.5 hrs without a restroom break. I had been down to 5 minutes before getting off Gluten. That included at night. The auther of the book said she is overwhelmed iwth responses from IC people. I would love to see a seperate area on this website for people's responses to Gluten Intolerance. Do a search on the Author's name for more info.
Chondroitin, Glucosamine, MSM
Posted by Md4im (Orlando, Fl - Florida, United States) on 04/14/2011
★★★★★
after immense daily suffering, I found an article on glucosamine-chondroitin-MSM for IC relief. Provides cellular components that are essential to the epithelial bladder lining. Made a 180* difference - very noticeable after just 2 days. I am still taking it 6 years later, and I can TELL when I miss a few days.
It has been a real life saver. I hope this helps other women out there!
Turmeric
Posted by Alexandra (Miami, Fl) on 04/12/2011
As Chrerieh said I started using equal parts apple cider vinegar and hydrogen peroxide as a douche twic a day, I have been using it since yesterday and I already feel better!!
Gelatin
Posted by Mel (Portland, Or) on 03/22/2011
★★★★★
In the past couple months I have had dramatic success with IC symptoms using plain, unflavored gelatin. After reading a medical report that suggested evidence Chondroitin may bond to compromised areas of bladder lining tissue, and knowing that Chondroitin is processed from cartilaginous matter, I decided to try adding a regimen of unflavored gelatin to my usual IC mindful diet and supplements (see posts). Obviously, vegetarians would not be able to try this, and those with religiously restricted diets would need to locate an appropriate type of gelatin. I started dissolving single packets of unflavored gelatin in hot teas and soups: consuming 3 packets a day. Within a week, not only had I noticed an absence of any painful flareups - but my bladder really did feel somehow stronger - something like less "bloated" or "distended" when "full". I have continued this for two months and I feel it may be the most restorative (as opposed to just soothing) IC specific remedy I use. I think it may be "building-up" bladder lining. If anyone else is game to try this for a few months, please post your results - I am eager to hear if others experince any similar changes.
Apple Cider Vinegar and Hydrogen Peroxide Douche
Posted by Lauren (Los Angeles, Ca) on 03/04/2011
★★★★☆
I too started douching w/ peroxide and vinegar due to a stubborn yeast infection and- voila!! IC symptoms (burning, pressure, pain, frequency) were soooo much better. So I douched for about 2 months, but it kept coming back quickly unless I douched every few hours. I learned I have a very heavy growth of group B strep in my vagina (tested negative for it 3 years ago, before IC started). So this explains why antibiotics always made my bladder feel better, but after I stopped i'd get a major flare-up (good bacteria killed off enabled bad ones to proliferate more).
Currently having luck with boric acid. I insert a "00" size veggie cap full of it at least once a day, and also a cap full of kefir cultured milk to repopulate good bacteria.
Reader Feedback
Posted by Marcie (Cheshire, Ct) on 03/02/2011
Jean I noticed you said you have Sjogrens and IC. I have them both as well. I have successfully used Elmiron. It takes a while (a year) to notice a difference, but it has changed my life. I would be very cautious about using supplements without checking with your rheumatologist because certain supplements can cause major problems with autoimmune conditions like Sjogrens. Two great resources are Women and Autoimmune Disease by Dr. Robert Lahita and The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin. Both are experts in their fields. Have you been given Restatis eye drops? They really help the dry eye. Also, elimination diet for the IC is essential. Best of luck to you.
Apple Cider Vinegar and Hydrogen Peroxide Douche
Posted by Shawna (Bronson, Mi) on 02/25/2011
★★★★★
I want to say thank you for this idea. I have been battleing urinary issues since just before Thanksgiving. These issues include constant burning, pressure and really bad spasms. Tests continue to be negative for infection. I've been on antibiotic off and on the whole time and __viaz for about a month, still no relief. Pain so bad at time I can't get out of bed, sleep in a recliner with pillows between my legs and have been off work for over a month. Running to the bathroom 30 or 40 times a day and 8-12 times at night has foreced me to hybernate. I started using the half perioxide half apple cider douche 3 days ago and drinking lemon juice with honey also and feel like a new person. Only getting up 1-2 times at night is awesome and I no longer feel the spasms or my bladder hardening. I quit taking my scripts yesterday and can not wait to go back in next week and find out the results of my scope and udi test. But am so thankful you shared this remedy.
Turmeric
Posted by Barb (Lakeland, Fl Usa) on 02/24/2011
I recently had a urinalysis with culture and the e'coli is still present. The doctor wants to put me back on a med that created terrible joint pain for me, then put me on a maintainance antibiotic. I don't want to go there! This time I am going to treat everything including the IBS-D aggressively. A big bottle of D'Mannose, along with UviUrsi, Mashmello, Digest Advantage (for the IBS-D, )probiotics, Activea, ( more probiotics) Coconut Oil. My doctor may not appreciate me but I'll go down and get the second urinalysis she ordered to test for cure, so I will know if it working. If not, then I'll have to do the antibiotics.
Thanks to everyone for the input.
Hydrogen Peroxide Douche
Posted by Lauren (Los Angeles, Ca) on 02/08/2011
★★★★★
Hey ladies, I developed "IC" after a miscarriage last year. A doc put me on various types of antibiotics (which always made my bladder feel better) for ureaplasma and possible Lyme disease; I have not had a positive urine culture since the onset of my "IC". Because of the antibiotics I got yeast infections a lot. Frustrated, I began douching with peroxide and - SURPRISE!!! My constant bladder symptoms (urgency, frequency, burning, pressure) and pain during intercourse were nearly erased!! So I ordered a vaginal test to figure out why. It showed that I don't have BV at all and very little yeast, but a serious overgrowth of group B strep (4 on a scale of 0-4 !! ) an antibiotic and herbal sensitivity test was done, showing all antibiotics to work, and also oregano and colloidal silver.
I'm currently trying oregano mixed with coconut oil (so I can mold it into a suppository and it wont sting). My doc says the herbals are better for vaginal problems because antibiotics kill off the lactobacillus/bifidobacterium, allowing infectious bacteria to return stronger. Whats interesting is I tested negative for group B strep while pregnant with my son 3 years ago.
Also, I noticed while using the antibiotics, kefir or any other cultured milk was the only product that seemed to truly have live and active bacteria. If I drank this, my stomach was fine. But with probiotic capsules, regular yogurt, my stomach was NOT happy! I hope this helps someone!! I'll keep you guys updated!
Reader Feedback
Posted by Jean (Wellsboro, Pa) on 02/07/2011
I was diagnosed with IC 1 1/2 yrs ago after a urogynecologist did a rectocele & urethral sling surgery. She suspected it before surgery & after testing in her office she said the only true way to diagnose this is during surgery when the surgeon fills your bladder with saline to full capacity & then takes films of the bladder. IC shows as tears in the lining. I had tiny tears and the treatment recommended was Elmiron(which I declined as it is a type of blood thinner), or bladder instillations (which I was taught to do at home) especially diet.
Eliminating caffeine, all artificial sweetners, all citrus & tomato products and advanced kegal exercises. These have helped me quite a bit. Baking soda 1 tsp in water 2x day gives fairly fast relief. My IC is not severe but extremely uncomfortable. Marshmallow root tea was also recommended in a book a read. Also helpful, but I'm not very disciplined, is the gluten=free diet which helps overall body inflammation. Did I mention I also have Sjogren's syndrome (severe dry eyes, nose, mouth, etc.) And allergies. I'm going to try the colloidal silver. Hope this helps someone.
Reader Feedback
Posted by Barbsdawn (Lakeland, Fl Usa) on 02/07/2011
I don't recall her exact words but I understood my doctor to say the only way to get the diagnosis is to have a biopsy. OH, NO, NO, NO! My bladder has been truamatized enough through multiple bladder surgeries which created this condition to begin with. Even the insertion of a catherter tube caused spasmatic episodes for days. How I wish, before the surgery, I had had the pelvic floor PT. It did wonders for me and I might have been able to avoid this whole mess.
Coconut Oil, Coconut Water
Posted by Aron1947 (Sarasota, Florida, Usa) on 02/05/2011
Hello Kelly from Chicago,
Could you, please, let me know how much coconut oil you were taking and who is the manufacturer. Thank you very much in advance. Best regards. Aron.
Reader Feedback
Posted by Gailde (Holiday, Florida) on 01/27/2011
Yes there is a test that can be done. I had the test done last week at my obgyn office. A Registered Nurse did the test. When it came to the potassium omg I thought I would die , it felt like a blow torch was burning my insides. This is how they tell you have I C. So I have been looking at natural things I can do for this and I will keep hunting and researching on this matter. I did just try the baking soda and water and I had instant relief. More than likely because people with IC are very acidic. So I am going to try to get my acid level down. You should get some urine test strips and check your urine to see if you are alkaline which is what it should be. I will see how I do. Will keep in touch. I also suffered for yrs with UTIs all the time.
Alkaline pH
Posted by Diane (Ottumwa, Iowa, Usa) on 01/14/2011
For I. C. , look at a particular form of calcium called Calcium Glycerophosphate, (brand is P______.) good luck everyone.
Apple Cider Vinegar
Posted by Vegathegreat (Charlotte, Nc) on 01/13/2011
I am also in Charlotte. You should go see Dr. Robert Evans in Greensboro, NC. He's one of the foremost IC experts in the country, and is extremely knowledgeable.
Turmeric
Posted by Elizabeth (Nashville, Tn) on 01/03/2011
Barb- Try taking Uva Ursi with a little pinch of baking soda in your water. The alkalinity of the BS lets the uva ursi do its thing. I love the stuff.
Turmeric
Posted by Barb B (Lakeland, Fl Usa) on 01/03/2011
Thanks for the feedback, Tom. I did try a big jar of the D-Mannose. I've used it in the past with great success, but not this time. I took antibiotics almost continually for 10 months and every time I got off them, the infection was back the next day. I took the anitibiotics, the probiotics and the D-Mannose, plus AZO or other OTC, but the infection was relentless. Xylitol was the only thing that kept it at bay. It still keeps it at bay but it doesn't get rid of the infection. I would have tried the D-Mannose with the Xylitol along with the antibiotic and probiotics, but my funds are very limited.
Turmeric
Posted by Tom (Regina, Sk) on 12/30/2010
Barbara:
Did you ever try d-mannose, the sugar in such as blueberries and cranberries that is determined as the real healing substance in those products?
http://www.tahomaclinic.com/mannose.shtml
D-mannose is a naturally occurring simple sugar, closely related (in chemical terms, a "stereoisomer") to glucose. Small amounts of D-mannose are metabolized by our bodies; more than small amounts are excreted promptly into the urine. But how can even large quantities of a simple natural sugar do anything at all to cure over 90% of all bladder and urinary tract infections?
The answer is found in the interaction between D-mannose and the bacterium found in over 90% of all bladder infections, Escherichia coli ("E. Coli"). [No, that's not the infamous E. Coli mutant associated with unsanitary food processing that's hospitalized and killed people. It's the normal E. coli found as part of the "normal microflora" in every intestinal tract.
But even normal E. Coli don't belong in the bladder and urinary tract; in these areas it multiplies and becomes an undesirable infection. But why doesn't the normal downflow of urine from the kidneys through the ureters into the bladder and thence beyond simply carry the E. Coli right along with it? What allows the E. Coli to "stick" to the inner walls of the bladder and even work their way upward (like "Spiderman") in some cases reaching as far as the kidneys?
Mannose found as a supplement in a bottle is not one of the cheaper nutraceuticals, because of course there is only a tiny percent by weight of it in a pound of blueberries. But compared to the miseries of a UTI, it would amount to nothing if it works! Example of bottles of mannose here in BING Images:
http://www.bing.com/images/search?q=d-mannose&go=&form=QBLH&scope=images&filt=all
Turmeric
Posted by Barbara B (Lakeland, Fl Usa) on 12/30/2010
I was thrilled to find this site and spent several hours reading about IC. It is so refreshing to be able to communicate with others who are experiencing what I am experiencing. I don't believe I have IC, but I believe I have the precursors to it. I sailed through four bladder surgeries, but the fifth, a year ago, traumatized my bladder and turned my life upside-down. Although I do not have the intense pain of IC, I do have painful urination, I do have daily episodes of acute inflammation and spasms and have to follow a low acidic diet to maintain control. I now have a potty chair next to my bed so that I avoid most night-time accidents. I adjust the leg length to tip the front forward a bit, which allows me to empty my bladder more quickly and completely. With the chair nearby and a draw on my bed, I also am able to avoid wearing protection at night, which helps helps with UTIs. The potty chair is also raised, which is much more comfortable than using a lower commode.
I am very eager to try the boric acid, turmeric, coconut oil, oregano oil, and marshmallow root. During flair-ups, tiny amounts of baking soda are moderately successful but I will increase my dosage. While I am going to try the apple- cider vinegar, I am cautious. I know that vinegars are very acidic in nature and and bother me tremendously, so I will introduce ACV VERY slowly. I had tried taking large amounts of cold-press aloe vera juice with not much success, but I will try the distilled concentrate to see if that has more benefit. Potassium citrate would tear me up (citric acid. ) and DSMO causes a strong and very unusual body odor, so I'll save that one for last. I have IB with diarrhea as well as OB, which are related, and the generic little green anti-diarrheal pills help tremedously with both conditions. If anyone knows something cheap and natural which would replace these, please let me know. I take probiotics.
I make my own low-acid coffee by mixing equal parts coffee (decaf is STRONGLY recommended for IC patients) and cold purified/distilled water, and storing it in a dark container in cool dark place or 18 hours. I then filter out the grounds to make a coffee concentrate that can be stored in the frig for up to a month. To make coffee, rule of thumb is 12 oz hot water to 2 tablespoons of the coffee concentrate, but adjust for personal taste.
Barley Milk
Posted by Mel (Portland, Or) on 12/22/2010
★★★★★
I can not say for sure if there is a direct link between my personal joint pain and I.C. , however, I believe they are indeed related. I believe they are related because first because the dietary/supplement remedies that help one always seem to help the other. And correspondingly, when one is flaring, so is the other. I believe that they are conditions both exacerbated by high acidity in the system, either as a result of diet, or stress, or both. These are the dietary items I have found that seem to give me comfort, relief, and healing... -barley water, and barley milk
-eastern barley (also known as hato mugi, jobs tears, coix), also as water or milk
-unflavored gelatin, mixed with cold water, then dissolved in tea or hot water and drunk or added to kefir, nondairy drink, or low-acid juice
-agar, used with beverages the same way as gelatin, above
-whole grain hemp seed milk
-whole grain unsweetened brown rice milk
-whole mixed grain nondairy beverage (a healthfood chain sells one with quinoa and amaranth)
-coconut water/juice (all natural)
-carrot juice
-marshmallow root tea
-soaked basil seed drink (all natural/homemade)
-fresh broccoli and kale sprouts
-onions
-chondroitin supplement
-msm supplement
-d-mannose supplement
If there is anything above you have not heard of, search it online and you will find info. I am doing very well after changing my diet and drinking plenty of the assorted beverages listed here. Good luck!
msm
Posted by Five Loaves (Fremont, Ca) on 12/07/2010
Dear Elizabeth,
I read your posting and knowing that you were looking for a form of vitamin C which is friendly to IC patients, I have been using a product called "Advan C" by NSI. This vitamin C's main ingredientce is: Advan-C mineral ascorbate complex. Together with this formula is: Calcium threonate and citrus bioflavonoid complex. I wish you can receive this e-mail and will be able to get this product. It is such a loss if you cannot take Vitamin C with the MSM. They do work together very well for IC pain. You may add 500 mg of turmeric, 3 times day. Another product is "Bladder Q" by a company called The Natural Bladder. You have to take it for 4-6 weeks to clear the flare up. But it is well worth it. Hope the above will help you relieve the pain and May God bless you. Five loaves
Barley Milk
Posted by Ziggy (Franklin, Pa) on 11/29/2010
I have read your post & see that you suffer from ic & joint pain. I am currently going thru the same thing at this time. Do you know why you have the joint pain. Just curious to know if you found out anything. Thanks so much!
