One hot drink that is hard for many IC patients to give up is their morning routine of drinking coffee. For some patients, drinking coffee (and carbonated soda) is an all-day thing. For those people it is even harder. Most hot teas even need to be cut out at first. Until your bladder heals, here are some suggestions from the IC Network on what you can drink if you’re craving something hot.

• First start off with hot water or hot milk with honey and sugar.
• Go to the local Starbucks and ask for hot milk with vanilla flavoring.
• The first teas to try once the bladder starts healing are chamomile and peppermint - both are bowel and bladder friendly.
• If these teas are tolerated well, try roasted carob tea. Celestial Seasonings makes several which are fairly IC friendly, including Gingerbread Spice, Almond Sunset, English Toffee and Vanilla Hazelnut.

• If your bladder is tolerating the roasted carob teas, you could then try the herbal coffees (Pero or Cafix). These are an acquired taste but quite a few patients like them. If your bladder doesn’t react to the herbal coffees, then try the LOW ACID regular coffees made by Euromild or Puroast.

If you are having an IC flare, the IC Network recommends going back to basics and just drinking water (not tap!) and milk.

This is not from the IC Network but from personal experience: When my bladder is acting up I drink marshmallow root tea. I read about it in a book I had purchased on IC - To Wake In Tears by Catherine Simone. I also have a sister-in-law who has Interstitial Cystitis and she drinks a lot of marshmallow root tea. It definitely provides some relief. I have to add sugar to mine in order to get it down but my SIL drinks it plain. You can purchase marshmallow root tea at your local health food store. Here is some more information on marshmallow root tea:

Marshmallow Root by Catherine Simone

When it comes to what to eat and avoid with Interstitial Cystitis, patients are probably going to get confused and will read so many different “theories”. The IC Network is an organization that I have the most faith in when it comes to what to do and not to with IC Disease. The IC Network recommends that patients eliminate the premanufactured and processed foods. For example, instead of buying boxed macaroni and cheese they recommend making homemade mac and cheese. The reason? You know what you are putting in homemade food. You may not recognize all of the additives and ingredients placed in packaged foods.

The IC Network also recommends keeping the diet simple and going organic whenever possible. Organic foods won’t have the pesticides and other chemicals on them that can irritate an IC patient’s bladder. This is the diet the IC Network recommends:

Meats
The IC Network says that you can eat any FRESH meat you would like, just do without the sauces (BBQ, steak). Instead of adding seasonings to the steak, saute mushrooms. Avoid processed and preserved meats.

Vegetables
Most vegetables should be okay with the exception of tomatoes and any tomato-based products. Asparagus can cause problems for IC patients.

Dairy
Milk and eggs are fine for the IC patient. Cheeses may be a different story. The IC Network recommends only eating MILD and FRESH cheeses. Examples include mozzarella, soft monterey jack or plain cottage cheese, farmers cheese, string cheese and small amounts of Parmesan cheese.

Breads
Preservative free breads made fresh at a local bakery or bread that you can make at home are an IC patient’s best choices. The reality is, however, an IC patient may not be physically up to making their own breads so if you have to purchase, buy plain wheat, white, rice or oat. Avoid sourdough and rye, as these may cause irritation.

Fruits
Most fruits are hard for IC patients to tolerate because they are acidic. Here is what the IC Network suggests for trying to eat fruits:

We suggest starting with pears and blueberries. If you do well with those, try a mild sweet apple (like Gala or Fuji) and just have a few slices to see how you feel. If you tolerate the apples well, try the tropical fruits of mango or papaya. If those sit well, try the melons like watermelon, canteloupe or honeydew. Please note, however, that melons do provoke symptoms for quite a few patients just, hopefully not you! Please avoid all citrus and be careful of citrus.

Desserts
My favorite part! Yum! Plain vanilla ice cream with caramel sauce are both IC friendly. Vanilla cookes and snickerdoodles are also IC friendly desserts. For those IC patients who like chocolate (Me!), there are carob candies that can be purchased. The IC Network recommends a carob candies made by Queen Bee Gardens.

There hasn’t been much research done on how vitamins and supplements affect IC Disease.  I can tell you what I know from my own personal experience.  I cannot take multivitamins or Vitamin C.  I have found that in order to take vitamins or supplements, I have to take the ones that serve an individual purpose.  For example, I have to buy a bottle of Vitamin B 12, a bottle of Vitamin E, etc. 

For someone who has just been diagnosed with IC Disease, or for someone with the illness who is trying to find out what they can and can’t tolerate, it would be best to ditch the multivitamins. By taking individual vitamins it is easier to find out what your body, or bladder, can tolerate.

While there isn’t a lot known about IC Disease and the affects of vitamins, below are some suggestions of what to avoid:

Vitamin C.  Because Vitamin C is acidic, it can cause IC flares.  There is an Ester C Vitamin that is better suited to IC patients because it is pH-balanced and acid neutralized.  It is recommended to start out with small doses, however.

B-Complex Vitamins.  It’s not known why but B-Complex vitamins are hard for IC patients to tolerate.  It is recommended that the patient take the individual B Vitamins.

Vitamins A,D,E,K.  These are considered fat soluble vitamins and are typically tolerated well by IC patients.  Calcium and magnesium should be okay for IC patients also.

If you read my post yesterday that listed the foods that should be avoided if you have IC Disease, you are probably thinking “Wow - what’s left?”.  I know that was my first thought.  I imagined that I would never enjoy eating again.  But fortunately that hasn’t been the case.  In my own personal IC experience with food (note I bolded that this was my own experience - may not be typical for others), I found that once I eliminated aggravating foods for a while, I was able to slowly reintroduce foods I really like and can now eat those.  I had to let my bladder heal first, however. 

As I had mentioned before, I couldn’t even drink water without having severe pain and terrible burning.  Once my IC was under control, the symptoms had eased up, and the Elmiron had helped to rebuild my bladder lining, I was able to even drink soda again.   I’m sure my urologist would not be happy to hear the soda drinking part but as long as I don’t overdo the soda I’m usually okay.

Even though the list I posted yesterday may seem long, there are still lots of foods that an IC patient can eat while they are going through their elimination diet.  Some of these foods that IC patients have reported having less trouble with include:

• Chicken
• Potatoes
• Pasta
• Lightly seasoned rice
• Vegetables (those not on the list from previous post)
• Fresh meats

You will have to become a little creative in order to make meals for yourself that you enjoy but it can and is done every day.  Here are some other suggestions to help you through your elimination diet (thanks to IC Help):

Learn how to read labels.  The fewer the ingredients the healthier and safer the item probably is.

Add salt to carbonated drinks.  If you can’t do without your soda or other carbonated beverage, you can add salt to make it flat.

Boil.  Boil down sauces containing alcohol.

Reduced-acid orange juice.   If you can’t do without your daily glass of OJ, you can purchase reduced-acid orange juice.  I personally cannot drink orange juice at all - any kind of orange juice.

Take Prelief.  Prelief is a dietary supplement that can be taken to help reduce bladder pain and urinary urgency when used with acidic foods and beverages. 

Tomorrow I will cover vitamins and supplements that should be avoided with IC. 

Each IC patient will probably have different food triggers that will cause their symptoms to flare.  The list below is just a general list that is used as a starting point for IC patients when they are starting their elimination diet. 

Foods to Avoid

Dairy - yogurt, sour cream, aged cheeses

Vegetables - onions, tomatoes, tofu, lima beans, soy beans, soy-based products

Fruits - apples, apricots, avocados, bananas, cantaloupes, citrus fruits, cranberries, grapes, nectarines, peaches, pineapples, plums, pomegranates, rhubarb, strawberries, juices made from these fruits

Grains & Carbs - rye, sourdough bread

Meats & Fish - processed, canned meats & fish, caviar, corned beef

Nuts - Most nuts should be avoided

Seasonings - ketchup, mustard, salsa, mayonnaise, spicy foods (Chinese, Thai, etc.), soy sauce, vinegar, Italian seasoning

Beverages - alcoholic beverages, soda, other carbonated drinks, tea, coffee, fruit juices

Additives/Preservatives - citric acid, monosodium glutamate (MSG), artificial sweeteners, foods containing preservatives and artificial ingredients and colors, benzol alcohol

Miscellaneous Things to Avoid - caffeine, tobacco, diet pills, junk foods, cold and allergy medications containing ephedrine or pseudoephedrine, and certain vitamins

Part 3 will include suggestions and other information on eliminating aggravating foods.

Ethex Corporation notified healthcare professionals of a voluntary recall of a single lot of morphine sulfate 60 mg extended release tablets (Lot No. 91762) due to a report of a tablet with twice the appropriate thickness. Oversized tablets may contain as much as two times the labeled level of active morphine sulfate. The lot was distributed by Ethex Corporation under an ‘Ethex” label between April 16th and April 27th of 2008.

An over dosage or over strength of opioids such as morphine have life-threatening consequences, including respiratory depression (difficulty or lack of breathing) and low blood pressure. Due to their illness, many patients for whom this product is prescribed are more likely to be highly debilitated with reduced strength or energy. Their impairment may make it more difficult to determine that a tablet is oversized than an unimpaired individual. For questions about the recall, consumers are encouraged to call their physician, pharmacist or other healthcare provider.

For any questions related to this action, please contact Ethex Customer Service (representatives are available Monday through Friday, 8 am to 5 pm CST):

Telephone 1-800-321-1705
Fax 1- 314-646-3751

Email customer-service@ethex.com

For more information see http://www.fda.gov/oc/po/firmrecalls/ethex06_08.html.

IC Disease patients may find that certain foods and drinks cause their symptoms to flare. This is especially true at the beginning or at the worst part of the illness. When I was at my worst with IC, just drinking water caused excruciating pain and caused my urine to burn terribly.  Until an IC patient has their symptoms and illness under control, an elimination diet may be necessary.  For some patients this may be a life long change they have to make.  For others it can be temporary. 

What can be difficult and confusing for IC patients is that the foods that need to be eliminated are not an across the board, general to everyone with IC type of diet. In order for IC Disease patients to find what foods they can and cannot tolerate, they need to journal their daily food intake and to record what symptoms they experience, if any, after eating each food or drink.

Tomorrow I will cover what foods to avoid for IC patients.

I can’t honestly remember a time in my life when I didn’t have to go to the bathroom much more than everyone else I knew. As a teenager, it was actually a running joke with a close friend of mine that I owed her family cases of toilet paper. I lived about five minutes away (walking distance) from a girl I became good friends with in high school. I would always go to the bathroom before I left my house but by the time I got to her house, would knock on the door, and someone would let me in, I would make a mad dash for their restroom.

My way of dealing with things has always been (and still is) to make jokes and make light of situations when something was wrong. I knew something was wrong with me, I had repeated doctor’s visits for urinary tract infections and bladder infections, but no one ever diagnosed IC Disease. The doctor repeatedly blamed the infections on me saying that I wasn’t wiping properly. I knew how to wipe properly but after a while I just gave up arguing with him about it.

I know now that regardless of what any doctor says, and regardless of what they find in their “tests”, if my instinct tells me something is wrong I am right. For many years I knew my insides weren’t working normally but no one would believe me. I trust ME from now on and you should too.

The European Society for the Study of Interstitial Cystitis Annual Meeting was recently held in Rome from June 5 - 7, 2008.  This year’s meeting consisted of 100 urologists and other healthcare professionals to discuss different presentations that focused on Interstitial Cystitis.  

One goal from this year’s meeting  of the ESSIC was to increase cooperation around the world to learn more about IC Disease and how treatment methods can be improved.  The meeting also included presentations on pain center organization, central nervous system pain processing, evaluation of the pelvic floor in Interstitial Cystitis, irritable bowel syndrome, and vulvar pain syndrome.

Some other topics discussed at the meeting are included below. You can read in detail about each one here.

• Antecedent Non-Bladder Syndromes in a Case Control Study of Interstitial Cystitis/Painful Bladder Syndrome
• Significance of Multidisciplinary Approach to Diagnostics of Causes Of Chronic Pelvic Pain in Women
• Preliminary Data Concerning Pain and Quality of Life in Patients with BPS/IC YKL-40 in Bladder Biopsies from Patients with BPS/IC
• Surgical Treatment of Intractable Bladder Pain Syndrome/Interstitial Cystitis (BPS/IC)
• CISTIC Study Report. Prospective Double-Blind Randomized Controlled Multi- Center Study Investigating the Efficacy of Hyaluronan in BPS/IC
• Bladder Pain Syndrome/Interstitial Cystitis and Vulvodynia: Two Aspects of One Syndrome
• Statistical Analysis of Symptoms, Endoscopy and Urothelial Morphology in Fifty-Eight Bladder Pain Syndrome/Interstitial Cystitis Female Patients
• Urodynamics and Interstitial Cystitis/Painful Bladder Syndrome
• Evaluation of the Efficacy of Intravesical Chondroitin Sulphate in BPS/IC
• Potassium Channel Kv1.3 and Kv1.6 Expression in the Bladder of Patients with Bladder Pain Syndrome/Interstitial Cystitis: A Controlled Study
• GRC 6211, the New TRPV1 Oral Antagonist Diminishes Pain in the Rat Model of BPS/IC

According to the IC Network, approximately 10% of Interstitial Cystitis patients are men but that figure has been disputed.  While the illness is mainly regarded as a “women’s disease”, men are afflicted and suffer as well.  It is thought that there have been several men diagnosed with chronic prostatitis who in fact have Interstitial Cystitis.

At an IC National Meeting, Dr. Robert Evans, a urologist, shared with other physicians the results of a small study that focused on IC Disease in men. Here is some of what he discovered:

Men have as much trouble obtaining a proper diagnosis as women, waiting an average of 4.3 years before diagnosis.

Men have symptoms on average of 3.6 years before diagnosis.

The average age of onset with men is 48 years old.

76% percent of patients were diagnosed with prostatitis, 2% with urethral strictures, 12% with non-specific urethritis, 60% with an enlarged prostate.

44% had a transurethreal prostatectomy with no improvement of symptoms.

100% were told, at some point in time, that they had a prostate or bladder infection.

Men have symptoms that include urinary frequency, frequency at night, pressure and pain in the bladder, scrotum, perineum and penis. Men can also have reduced urine stream and retain urine.

Diagnosing IC Disease in men is similar to women except with men, the doctor must rule out all diseases/conditions related to the prostate. Men typically have a prostate exam.