Are you newly diagnosed with interstitial cystitis, painful bladder syndrome or prostatitis?? Confused about the role of diet in managing and reducing your symptoms?? Here’s a video that explains the top forbidden foods and why they can be so irritating to our tender urinary tract.
http://www.youtube.com/watch?v=M2YaUBw390k
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We’ve launched a brand new series of interstitial cystitis videos that you can now view on youtube. You’ll find a wide variety of self-help videos on managing IC flares, treating dry mouth effectively, sensitive skin, chocolate alternatives and much, much more!
http://www.ic-network.com/videos/
or
Just search You Tube for Interstitial Cystitis… or Jill Osborne. You can also subscribe to our video series.
Jill O.
We’ve all been there.. a doctor who listens to us describing our symptoms and then announces “that’s impossible,” implying that “it was all in our head.” It happened to me just last week. I had developed an unusual tremor in, of all places, my tongue. I was pretty scared. It made talking very difficult and, at times, it felt as if I was choking. A quick trip to my local Urgent Care clinic and a Neurologist gave me few, if any, answers. I wanted to know what was happening, why and what I could do about it. They both said that it was probably part of my inherited familial tremor.
On my Dad’s side of the family, we carry the same tremor that Katherine Hepburn struggled with, known as a benign “essential” tremor. It worsens with age yet usually doesn’t impact our daily life. My grandfather, for example, was still flying his plane in his 90’s despite the fact that his hand shook wildly on the controls. Yes, really!! I’ve certainly noticed moments of shaking since childhood that, in my forties, are now more common especially in my neck, chest and legs. Because the tongue tremor was so unusual, uncomfortable and interfered with my ability to work and talk, I freaked!
Two days later I had a hunch. I wondered if a new medication I’d been taking for my stomach, Reglan, had any unusual side effects. I quickled googled it and was floored to see that it was well known for causing, you guessed it, neck and tongue tremors, along with severe depression and anxiety. Difficulty talking or swallowing was considered an urgent side effect requiring immediate consultation with your doctor. A quick call to my gastroenterologist confirmed that both neck and tongue tremors were COMMON with this medication and that I needed to stop it immediately. He also reported that there were rare cases when the side effects could become permanent. Yikes!
How could two other doctors, including a neurologist who specializes in tremor disorders, miss this connection?? I still don’t know but what I do know is that if I had sat passively at home without asking questions, I could have had a very serious complication. In hindsight, I should have done more than glance through the medication information sheet that came with my first prescription. I didn’t pay enough attention to the potential side effects. My mistake.
Side effects are a potential risk with any medication including those used for IC/PBS. Amitryptiline (aka Elavil) is well known for trigger dry mouth, weight gain, but if you look at the rarer side effects, tachycardia and/or arrythmias can also occur. I experienced all of those symptoms and could not tolerate this type of medication. Hydroxyzine (aka Atarax or Vistaril) can trigger some drowsiness when first taken but one of the more unusual side effects is that it can also trigger vivid dreams and, for some patients, nightmares. It’s rare, but it can happen. Pentosan polysulfate (aka Elmiron) can cause headache, stomach upset, hair loss and diarrhea. But, in rare cases (less than 1%), it has also caused anemia, conjunctivitis, tinnitus and retinal hemorrhage.
My purpose in talking about side effects is not to discourage you from trying any medication but to understand that even aspirin or advil can trigger unexpected reactions. You should be aware of the types of side effects that occur so that you can catch any problems early. My mouth problems are slowly improving but it was a definite wake up call for me to be even more conscientious about my medication use.
There are several websites that provide searchable databases of medications, including:
Medline Plus – http://www.nlm.nih.gov/medlineplus/druginformation.html
Drugs.com - http://www.drugs.com
RX List – http://www.rxlist.com
Wikipedia – http://www.wikipedia.com
If you’re not familiar with the Physician’s Desk Reference (PDR), you should be. It is available in most libraries and on the web. This is an industry guide that you can use to research your medications, including the dosages, uses and potential side effects. It also includes pictures of pills so that you can confirm that you are taking the correct medication.
Your pharmacist can also be a great resource for information. My pharmacy provides pharmacy consultation services with almost all new prescriptions. And, ultimately, take the time during your appointments to ask your doctor what the potential risks of medications are. Is there a medication with fewer side effects? Is there a medication which is more affordable? It’s a little naïve to accept a prescription for a new medication without having some information about what that medication is supposed to do for you.
Well-known and somewhat controversial author Bernie Siegel MD once wrote that he didn’t want his cancer patients to be “patient.” He didn’t want them to passively sit in a hospital bed, quietly waiting for people to help. He wanted his patients to be “respants,” which stands for “responsible participants in their medical care.” He wanted them to be noisy. He wanted them to ask questions. He gave them permission to be angry, if needed. He wanted them to active and to be bold. In other words, he wanted his patients to fight back physically, mentally and emotionally. Some situations require patience… but many more require action.
Thus, when you find yourself struggling with a new symptom, a new reaction or something which genuinely doesn’t feel right or frightens you, I think it pays to be active. Don’t be patient. Pick up the phone and ask someone. Call your doctor. Speak with the nurse. Talk with your pharmacist. And, as in my case, if you don’t get assistance, keep asking until you do.
(By ICN Founder Jill O.)
Who would have guessed that one of the most effective self-help strategies costs under $3.00 and can be found at almost every drug store. What is it? Well, before I spill the beans, let me tell you how I heard about it.
In my early twenties (years before my IC began), I developed vulvodynia - an intense irritation of the vulva and perineum. It felt like a raging yeast infection (as if someone had rubbed sandpaper over my vulva) yet, when I visited my ob-gyn, he never found yeast and usually said that I “looked normal” down there. After several visits, he explained it by saying that I had most sensitive skin that he had ever seen and that I would have to learn to live with it. So, I tried to.
Wearing pants was painful and uncomfortable. When buying jeans, I desperately looked for brands that had non irritating crotch seams. I even remember cutting those seams down so that they wouldn’t chafe so much. Thank goodness for yoga pants. Made of a cotton knit, they have enough stretch to accommodate our randomly swelling IC belly, do not bind in the crotch area and are completely comfortable.
It didn’t take long for me to figure out that soaps were very irritating, especially bubble baths. Underwear washed in most commercial laundry detergents (i.e. Cheer, Tide etc.) would, within five minutes, cause my vulvodynia to flare. Menstrual pads were drying and chafing. Riding a bicycle was impossible. And, as my grandmother passed down to my mother, I learned about wearing “white cotton” underwear, not using soap, using only baking soda in my bath water and wearing stockings rather than pantyhose.
My vulvodynia didn’t take kindly to the onset of my interstitial cystitis and, like many of my fellow IC sufferers, I struggled with uncomfortable “urine burn” - a feeling of hot urine burning the vulva and perineum. It was with great frustration that I attended a local support group for vulvodynia, squirming on the 20 mile drive to Petaluma. I was given one of the best self-help tips that I have to share with both IC and vulvodynia patients today! Buy a perineal wash bottle from your nearest drug store. Do not buy any bottles that have chemicals, cleansers or liquid in them. It should be empty. Fill it ONLY with plain, simple water or bottled spring water if you live in an area with hard water. Every time you use the restroom, rinse yourself off thoroughly and pat gently dry. If your urine feels hot, use cooler water to soothe those tender tissues.
It’s been about twenty years since I started using a wash bottle and my vulvodynia symptoms now rarely appear. It has reduced my incidence of UTI’s and has an unexpected benefit of being very soothing after sex. It was $3.00 well spent. If you can’t find a bottle locally, we offer them for sale in the ICN Shop . Look for it under “restroom supplies.”
I’m repeating here what I just offered by PM to an IC patient who was frustrated with a local urologist who wouldn’t offer more than the basic treatments. I hope this helps us all understand just how these clinics differ, etc. - Jill
Local Urology Clinics
The smaller urology offices in smaller towns or just small clinics run by one or two doctors are usually the first line of intervention but they often don’t have the funding, resources, experience and/or knowledge of newer therapies. They often stick to the conventional Elmiron, DMSO approach to treating IC though many more are finally using rescue instillations with great success.
Regional Urology Clinics
Thus, we then look for larger clinics in more urban areas that have a strong interest in IC, female urology and/or pelvic pain. They tend to have five or more urologists on staff, one of which is usually interested in chronic bladder disorders or female urology. They may also have a pelvic floor specialist that they refer patients too. These clinics usually have the resources to attend more conferences and often offer the traditional AND more experimental therapies, such as botox. Dr. Jay Burstein and the DeKalb Clinic (Illinois) is a good example of a regional urology clinic.
University Medical Centers & Medical Schools
We then look at University run Medical Centers and Schools which function, primarily, as referral centers for the more complex cases that the smaller clinics can’t or won’t handle.
The advantage of a university medical center urology clinic is that they see far more patients, have more experience with diagnostic methods (inotherwords, they often do a cystoscopy with less pain and discomfort because they have so much more experience.) Stanford University, for example, the primary referral center for Northern California and they are superb at diagnosis, assessment and offer a wide variety of treatments available.
Universities are also far more heavily involved in some IC clinical trials that are testing new potential treatments for IC. Many pass rigorous reviews from the National Institutes of Health that prove that the doctors have sufficient knowledge, staff and resources to conduct studies. These researchers are almost always found at the big IC conferences and thus are on the absolute cutting edge of IC.
IC Specific Clinics
Though few and far between, there are clinics devoted specifically to IC/pelvic pain. Dr. Moldwin, for example, does run an Interstitial Cystitis Center at the Long Island Jewish Medical Center. It doesn’t pay all the bills though and may just devote two days a week to IC though some centers do offer daily instillation therapy. Most urologists see a wide variety of patients with other conditions besides IC.
What I look for, often, are doctors who attend conferences, conduct some research and facilitate IC support groups because that tells me that that doctor really understands the support and care that IC patients need.
Hope that helps!
Jill 
(By Jill Osborne, MA - ICN Founder)
The most frequent question that we receive on the IC Network is how to locate medical care providers who are compassionate and knowledgable about IC. While IC is now more known throughout the urology professional communities, there are still areas of the USA where knowledge is slim, particularly the Southern states. There are also some “old school” urologists who don’t believe in IC or who provide minimal treatment. As thousands of patients can attest, finding the perfect doctor your first try is quite rare. Many patients see several before they find that “one” professional who truly helps them. Here are some suggestions that may help you in your search for a great IC medical care provider.
#1 - Locating Potential Candidates
Whenever you start a search for a new physician or physical therapist, the first place to begin is a local IC support group. Try to attend a local meeting where you can ask patients about their experience with physicians and also ask the group leader about those physicians and clinics that receive the best reviews. Click here for a current list of groups & group leaders.
If you’re in a small town or a rural part of the country, look to nearby urban centers and, ideally, university affiliated hospitals and clinics. Universities are usually referred the most complex patients in their area, thus are the most adept at treating complex urinary problems, including IC. They are also tend to be more experienced at diagnosis. It’s worth the drive!
The web offers several different physician finder services that are searchable by zip code, city or state that might help you locate more candiates.
Please note that some clinics and doctors change interests. None of these lists are perfect and may contain the names of the clinics that have changed direction away from IC. Thus, to rule those out, move to the next step, contacting the clinic directly.
#2 - Contact The Clinic & Request An Appointment
Call their office and ask if they treat interstitial cystitis. If they do, make an introductory appointment and please let the receptionist know that you would like some office time with the physician to discuss his approach to treating IC. Don’t forget to bring your ICN Medical Records File or summarize your treatments and tests on just one or two sheets of paper.
#3 - Talk the doctor & support staff
During this first appointment, tell your doctor that you are looking for care for possible interstitial cystitis and that you would like to hear more about how they work with IC and/or pelvic floor dysfunction patients. Make it a point to ask the doctor a few brief yet probing questions.
During the appointment, try to talk with the nursing and support staff. They are often the lifeline of IC patients and can be your advocate. Say Hi and ask them for tips on working with their clinic. You know… the classic do’s and don’ts!
#4 - Selecting A Provider
Ultimately, you’ll have to choose someone based upon their experience with IC and their bedside manner. Are they knowledgeable about new treatments?? Are they experienced with IC? Were they kind to you?? If you’re getting good vibes from the staff, physician (and the local support group) then you’ve found a clinic that is worth trying.
Fair warning.. your progress will depend upon the amount of effort you put into learning about IC, your treatment options, self-help strategies at home, diet modification, etc. etc. It’s never good to walk into your doctors office and say “I’m desperate. I don’t care what you do, just do something.” There is no excuse for not knowing what a doctor puts into your bladder. You must be a part of the decision making process. Be an active participant. Bring your IC Survival Guide with you to appointments so that you and your doctor can discuss the pros and cons of any treatment. If not you, then who should take charge of your bladder? It’s you!
#5 - If You’re Asked To Leave
If a physician simply doesn’t have any other treatment ideas, they may send you to a more experienced clinic or IC specialist. This is a good move. You want to be with the most experienced doctors in your region. Certainly, many patients have chosen to leave a practice on their own in search of someone who is more compassionate or skilled. This is your right and, in many cases, a good option.
But, if you’ve been “asked to leave” several physicians, take a moment and ask yourself what happened. A successful physician-patient relationship is built on trust, honesty and good communication. Some patients cross the line to the point that staff don’t want to work with them anymore. They may call too often or are rude on the phone. They often refuse appointment times that are available. They may be late to appointments. Some show no determination to help themselves (i.e. the IC diet or participating in a pain management program.) Some simply ignore doctors instructions or fail to comply with a drug contract. Lying to your physician, particularly about medication, is doom.
Remember, how you act with your physician also reflects on the other IC patients in that practice. Show them that we are well prepared and active patients, determined to help. Your knowledge of IC, determination to be a proactive patient and acts of kindness towards staff may reflect on the next IC patient who walks through the door.
Comments?? Disagree with me?? Have a story to share??? E-mail me now at: jill@ic-network.com
When someone calls our office struggling with urethral burning, we usually go over five potential contributing factors. I thought that it would be nice to include these here as well!
(1) UTI
This is always worth mentioning because IC patients do get infections and the one typical symptom of a UTI is that sharp, burning sensation that occurs DURING urination. So, if you find that you’re biting your lip as you start to pee, it’s helpful to rule out infection… even with a home UTI kit.
(2) Paraurethral Gland Infection
Your urethra is roughly the size and width of your pinkie finger. About halfway up the urethra is a small, spongy gland that kind of wraps around the urethra that we call the paraurethral or periurethral gland. It’s a ‘homologue’ to the male prostate gland which means that it’s identical in cell structure to the male prostate. And, like the prostate gland, it’s known for becoming stagnant and infected. I’ve personally worked with several patients who have had urethral pain due to infections that had to be drained. They can often be felt as small bumps, roughly the size of a small pea, near the base & front of the vagina . Here’s an article that might be helpful: http://www.ic-network.com/newsroom/796.html
(3) Pelvic Floor Dysfunction
Pelvic floor muscle spasms or tension have a “burning” quality to the pain. When I have a bladder spasm or strong pelvic floor spasm, I often feel a burning sensation in the vagina almost like a yeast infection. Others have experienced symptoms closer to their urethra. If you haven’t had a pelvic floor assessment, it might be worth doing so we know that many IC patients struggle with tight, tender, burning muscles. PFD is VERY treatable! We have a great new CD from the WISH program at Beaumont Hospital (MI) for women with pelvic pain that you might find helpful. http://www.icnsales.com/Guided-Image…ain-p-104.html
(4) Urine Burn
If your urine feels hot and that it’s burning the tissues outside of your urethra (i.e. the vulva), we call this “urine burn” and you’re not alone. This is very common and that burning sensation is really more a sign of irritation. It can be dramatically reduced by spraying cool or room temperature water on your urethra/vulva during and after urination. We have some periwash bottles in our shop at: http://www.icnsales.com. Look under restroom supplies. They’re like $2.99. Just fill with water (no other chemicals please) and rinse each time you use the restroom. It works amazingly well!
(5) Chemical SensitivityIf I put on a pair of underwear washed in Cheer or Tide, within five minutes I’ll have vulvar and urethral discomfort and burning. Really!! I think it’s because our nerves have become more sensitized and thus vulnerable to chemicals & stimulation. We’ve got two great articles on this in our patient handbook that you might want to review. The most gentle bath soaps are either Basis or Dove bars of soap… or the Very Private Body Wash. For the laundry detergent, we suggest either Ivory Snow or Dreft and always rinse twice to get any and all soap residue off of your clothes. Also, you shouldn’t be using any fabric softeners or products that make your laundry smell better. These are very irritating to the crotch area.
IC Self Help Strategies - http://www.ic-network.com/handbook/slfhlp.html#soaps
The Case of the Poison Underwear - http://www.ic-network.com/handbook/selfhelp1005.html
Just a few ideas worth considering!
Jill
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Folks… I received this lovely message from an IC patient after she received our birthday greeting. She raises an important issue…. criticism she’s taken from others about how any disease can be “cured” with the proper “thinking.” Check it out and tell me what ya think? Have you been told that it’s all in your head?? Have you been criticized for not believing that you could get better.
I have to share that one of my older friends from high school really crushed me after my diagnosis when she said that she would refer me to her “astral therapist” who would then tell me why I wanted to be ill. That person would then miraculously told me how I could improve my thoughts to cure my IC. Ironic when she called me a few years later to ask for advice about her son who was struggling with a chronic illness. I had to bite my tongue… but just barely. - Jill
Thank you , thank you, thank you! Your message came at a time when I really needed to know that true, real people understand what it means to have IC. Thanks for your honest positiveness, not the kind that I keep hearing, ie, “Believe that you will heal yourself and miraculously you will, if you believe hard enough. These thoughts, unfortunately inspired by the book “The Secret” which all of my friends seem to take for mantra lately make me really frustrated.
It is very cruel to say these things to a person with an illness when the person saying this is perfectly healthy. IC patients hope everyday, and we believe that a cure will come and I do this constantly. To accuse us of not healing ourselves because we don’t believe hard enough is the same as blaming us for our illness ( you know, we gave it to ourselves because we are not positive enough).
Thank you for putting the reality back into my life and for inspiring TRUE optimism about this illness. I wish more people would just understand the strength it takes to make it through the day and how despite all we go through we still manage to smile. THAT is optimism in its purist form, not the type fabricated by this “The Secret” book.
Whenever I get down, I think of your organization and all that you do each and every day to make our dream of a cure become a reality. You are miraculous to me.
Thank you for the birthday message. I am going to have a great day!
Alessandra B.
Share your thoughts now in the ICN Forum.
http://www.ic-network.com/forum/showthread.php?p=340433#post340433
Here’s a question that we just took from an IC patient in South Africa!
Q: “I was just reading up inthe latest newsletter about vitamin C and other supplements. I am very worried about not being able to take vit c. I worry about getting cataracts, other eye problems, etc. Besides not being able to boost my immune system, in the event of colds and flu etc. What can I do? I have had ic for 10 years or so, and do not take any medication for it. I find if I just eat bland foods and stay away from things I should not eat, I keep my pain to a minimum. That is not to say I dont try sometimes to eat something I shouldnt, but it isnt worth it.”
A: The safest way is to focus on those veggies that are high in Vitamin C like green bell peppers, potatoes and green leafy veggies (spinach, lettuce, cabbage). You can also try taking a low acid Ester C… which seems to be much easier for some, but not all, IC patients to tolerate. Lastly, I’m not sure if they offer a low acid orange juice in South Africa. They do here in the states. You could try that… provided that you dilute it substantially.
Don’t forget, though, that using therapies that can help calm the bladder and reduce inflammation might help your bladder improve even more. The use of an antihistamine (aka hydroxyzine) helps control histamine induced inflammation. An antidepressant, such as Amitryptiline, helps control neuroinflammation. There are also protective coatings, such as Elmiron and rescue instillations, that are worth talking with your care provider about. Don’t overlook, as well, some of the OTC supplements, such as CystaQ, Cystoprotek, Bladder Q or Desert Harvest Aloe, are currently available.
Recently, a newly diagnosed IC patient contacted the ICN stating that she had stopped eating all solid foods because she was afraid that she would irritate her bladder. She was also very confused by the different lists of “good” and “bad” foods that she had found. She didn’t know what to eat and was barely existing on rice, milk and water.
It’s very common for newly diagnosed patients to be confused about diet but, with some basic education, you’ll find that there are many foods that are IC friendly. Remember that some lists floating around the web are just very old and outdated while others may have been put together by patients who are just “guessing” about IC friendly foods. If you have a list that says eggs are bad! Throw it away. It’s an old list. Egg whites are natural acid reducers.
Please do not take lists of “bad” foods literally. The IC diet is very INDIVIDUAL and what one patient may find irritating, another patient may be able to tolerate in small (or large) amounts. It will take some time to find your bladder friendly foods. Here are some basic, simple tips that might be helpful. At the end of this article, we include references to more information and recipes.
If you’re struggling with diet, try thinking of your bladder as having little wounds and/or inflammation in it. Your job is to avoid those foods that would irritate those wounds, such as acids, alcohols and heavy salts. The most common IC irritants are coffee (even decaf), tea, herbal teas, sodas, diet sodas and fruit juices (cranberry, orange, lemonade, etc.) You would not pour acid on a wound on your hand, so why would you pour acid on a tender, wounded bladder. Worse, if you poured acid on the same wound every day, it would become more inflamed, irritated and painful. Therefore, the great majority of IC patients find relief from some their symptoms and can prevent the onset of future diet induced flares.
So, what can you eat? Focus on a whole, fresh natural diet rather than fast, pre-manufactured foods that often have dozens of chemicals that can irritate the bladder. Fresh grilled meats (chicken, beef, fish, pork) are IC standards, though you’ll want to avoid BBQ sauce, ketchup and steak sauce. Preserved meats and “stove top” packaged or frozen meals may be more of a problem because they have extra preservatives and salts. Vegetables, in general, are quite IC friendly with the exception of tomatoes (acidic) and, for some, asparagus. So, a fresh bowl of green beans, sweet potatoes, baked potatoes, can be hearty and very filling. Salads (lettuce, carrots, celery, sprouts, etc.) are also quite friendly though salad dressing can be a challenge. Many patients enjoy using flavored “olive oils” as an IC safe salad dressing.
Breads are usually IC friendly. But, some of us have irritable bowel syndrome that may be irritated by some grains. In my case, I can’t eat oats without having intense intestinal cramping because I’m allergic to oats. I’ve found one brand (Food For Life – Ezekial Flourless Breads) that is bladder and bowel friendly for my tender system. They offer low salt wheat, cinnamon raisin and sesame breads, with excellent protein, roughage and a low glycemic index score. This brand comes frozen and can be found in many specialty food stores.
Fruits are the hardest and most confusing part of the IC diet, especially for patients who are juicers. The most acidic fruits are oranges, grapefruit, lemons, limes, cranberry and even strawberries. But, many patients report that pears are very IC friendly. Some patients can tolerate melons (honeydew, watermelon, etc). Still others find that mild apples (like Gala apples) are IC friendly. In my case, I love tropical fruits and they rarely bother my bladder, especially mango and papaya. I can even drink a small amount of pineapple juice. But, I can’t drink apple juice at all. Go figure! It will take time, patience and testing for you to find fruits that are good for you.
Multi-vitamins are often a frequent source of irritation for patients. Vitamin C complexes can be extremely acidic. An Ester-C may be more tolerable, but even that can be too strong for some patients. B-6 and magnesium can also irritate the bladder. As Bev Laumann reports in Taste of the Good Life, “Another interesting phenomenon is that although some vitamin supplements cause IC symptom flares, the same amount of those vitamins when found in food appear not to have the effect.” So, following our theme of a natural diet can easily give you the necessary amounts of vitamins. Broccoli, for example, is an excellent source of vitamin C.
Most patients use an elimination diet to find the foods that irritate their bladders. You can learn more about this in the ICN Patient Handbook. However you choose to proceed, remember that quantity may be an issue. Start with a small amount of a risk food (testing only one food a day) and complete a voiding diary. If your pain, frequency or urgency got worse, then that food should stay on your bad list. But, if you feel good the next day, you can probably add SMALL amounts of that food to your diet. Don’t forget that Prelief is now available and can help reduce the acids in food as well! Always remember that your goal is to help reduce the inflammation in your bladder. More information on the IC diet can be found:
Three Printed Resources -
A Taste of the Good Life – A Cookbook for an IC Diet by Bev Laumann
Confident Choices: Customizing the IC Diet by Julie Beyer RD
The ICN Special Report on Diet
Avalable at: http://www.icnshop.com
More web information -
The IC Patient Handbook Diet Guide
Fresh Tastes by Bev Laumann - feature columns on diet and IC
The IC Chef On-Line Cookbook - recipes submitted by patients
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