The IC Underground

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.

We APPLAUD those mothers of interstitial cystitis patients who have provided us unconditional love and support. They’ve listened to our fears, comforted our tears and been a constant source of encouragement and love.  You have given us the strength and courage to face and often overcome our IC struggles.

We SALUTE those IC patients who, despite their own illness, remain steadfast MOTHERS to their children and extended family. Each day, you work to make your house a happy home. You provide comfort and a safe place for family members to land. You are amazing women!

We want to ENCOURAGE IC patients who are hoping to become MOTHERS. Don’t let IC stop you. IC cannot change your heart, your soul and your ability to love a child. You can be an awesome parent, though it will certainly require careful planning and decision making. We’ll be launching a new ICN Pregnancy Resource Center on our website in the very near future that we hope will guide you through these precious moments.

But, most of all, we celebrate each and every IC patient who continues to work hard, each day, to live your life as fully as you can. Whether you have a fancy career or stay at home, your life is important and meaningful. You have family who love you and friends who care for you dearly.

Happy Mother’s Day!!

Jill Osborne & the entire Interstitial Cystitis Network Family

——————————

For more resources that can help you in your journey of motherhood and parenthood, such as our children’s book “My Mom Has IC: A Painful Bladder Story,” please visit the ICN Shop at: http://www.icnsales.com! Our goal is to support you!!

Reducing Skin Irritation and Urine Burn Common In Interstitial Cystitis and Bladder Pain Syndrome

(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.”

Imagine having an implant done. You’re told “You’ll need constant medical care.” You’re told “The Device will need to be adjusted occasionally.” And then your finances became so challenged that you’re forced to go on Medicaid or lose your insurance entirely. Can you still receive care?? Apparently not if you’ve received Interstim and you live in Florida.

One IC patient has tried contacting dozens of doctors to find atleast one who would adjust her Interstim device and they’ve all said that they don’t take her insurance, the state run Florida Medicaid program. She called the Patient Assistance Line and was told that it was her responsibility to find a doctor who would work with her insurance. Well, what is she supposed to do if NO doctors in the state who work with Interstim take Medicaid? So far, every doctor she’s contacted on the Medtronic list has said “No”… though she still has a few more to contact.

I don’t know about you but this infuriates me. If you were a candidate considering Interstim and were told “Oh yeah, if you ever lose your job and your forced to go on Medicaid … no doctor will maintain your device?” would you have it done?? Am I crazy??? Doesn’t the manufacturer have some responsibility in maintaining a diverse list of physician providers that will serve not only rich patients but also the poor??? God forbid a patient lose their insurance entirely. How can they possibly receive care for a device that requires constant care and monitoring.” Clearly, this may be a serious lapse in medical device industry.

Do you have an implant story to share?? Have you had difficulty finding someone to maintain your device?? Have you been discriminated against because you have Medicaid?? Please share your story!

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.

• ICN Physician Listings - each has an interest in treating IC and/or other pelvic pain conditions.
• ICN Physical Therapist Listing - specializing in pelvic floor dysfunction
• NIDDK Research Centers - considered the best IC research facilities in the country
• American Urogynecology Association Find A Provider Service (medical association)
• International Pelvic Pain Society Find A Provider Service (medical association)
• AMA Doctor Finder (medical association)
• American Physical Therapy Association Find a PT Service (medical association)
• Ortho Urology Find A Doctor Database (pharmaceutical company)
• Medtronic Find An Interstim Specialist Database (medical device company)

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.

1. How many interstitial cystitis/painful bladder patients have you treated?
2. What tests do you perform to make a diagnosis of IC? (Ask if you can provide test results done in the previous year by another professional.)
3. What treatments do you typically work with? (Preferably, you’ll want a doctor who can provide several different types of therapies from oral medications, rescue instillations, other instillations etc. etc.) A worrisome point is if they mention the older, more outdated therapies as primary treatments, such as Chlorpactin, Silver Nitrate. If they mention the newer therapies, such as heparin instillations, in addition to the IC staples of antihistamines, antidepressants, Elmiron and even Botox, it shows that they are more up to date.
4. What treatments have you had the most success with?
5. What treatments have you found to be less successful?
6. If I have an IC flare, who would I contact in your office for assistance?
7. Do you work with pelvic floor dysfunction or make a referral to a local physical therapist who works woth PFD?
8. Do you provide pain care or make referrals for a local pain center?
9. What advice do you commonly give to your IC patients?

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!

• Ask them what their policy is for a possible UTI. Can you drop by to leave a urine sample if you think you might have a bladder infection? Should you call first??
• Will the nurse advocate for you with the doctor, perhaps when you need prescriptions refilled.
• How easy is it to get an appointment, especially if you’re in a painful flare?

#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
__________________

I’ve just added new information on three new support groups in the USA! We say welcome to the new groups in Saginaw Michigan (Laura Hintz and Angie Powers), Marion Ohio (Vickie) and Winchester Virginia (Kimberly Strawderman). These ladies have done a truly remarkable thing… by creating an opportunity for patients to gather together and support each other. There is no substitute for having someone who can give you a hug when you’re having a rough day. Support groups are a great way to make friends and learn new, helpful coping strategies. They can also help you find the best doctors/pt’s in your region.

For more info, please see our support group listings! Don’t forget that you can help spread the word about support group meetings by adding them to our ICN Events Calendar as well!

USA Support Group Listings - http://www.ic-network.com/activism/supportgroups.html

IC Events Calendar - http://www.ic-network.com/forum/calendar.php

Jill

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

Interstitial cystitis patients in Illinois have a new support resource. IC patient Tracie Klug is launching her group in the Dekalb Illinois region! For information on location, date and time, please contact Tracie!

Dekalb Area IC Support Group
Group Leader: Tracie Klug
Phone: (815) 761-4902
Email: traciek79@yahoo.com

A full list of USA and Canada IC support groups, by state and province, can be found at: http://www.ic-network.com/forum/showthread.php?p=331610#post331610

Jill Osborne

IC & Taxes - Take full advantage of medical deductions

Are your medical costs related to IC overwhelming?
Did you attend an IC conference last year?
Has your doctor suggested a treatment not covered by your health insurance, such as acupuncture?
Are you using food supplements to help reduce your bladder symptoms??

If you’re feeling the financial pinch during this years tax season, take heart! Many medical costs are tax deductible. ICN user JoyceV brought this to our attention by reporting that she was able to deduct some of the cost of the acupuncture treatments that her physician recommended. Her accountant simply requested that her physician write a simple letter which stated “Joyce V has interstitial cystitis. Acupuncture therapy would be beneficial to her condition.” She was then able to deduct a portion of those acupuncture fees.

Our ICN tax accountant confirmed that a variety of medical costs are certainly deductible on the Schedule A tax form, including acupuncture. But, we’re also excited to report that certain food supplements may also be covered. Apparently, the tax court has allowed deductions for “the extra cost of foods over the cost of a normal diet when prescribed by a doctor to alleviate a specific medical condition.” Thus, a food supplement such as Cystoprotek may be deductible if your physician supports its use.

Kay Bell (Bankrate.com) reports that several other health related deductions are often missed by patients during the tax season, including:

• Travel expenses to and from medical treatments. For 2006, you can deduct 18 cents per mile. 2007 allows a 20 cent per mile deduction.
• Insurance payments from already taxed income, including the cost of long-term care insurance.
• Uninsured medical treatments such as an extra pair of eyeglasses or set of contact lenses, false teeth, hearing aids, and artificial limbs.
• Laser vision corrective surgery
• Medically necessary costs prescribed by a physician. For the IC patient, the cost of catheters for home instillations may be partially deductible.
• The cost of admission and transportion to an IC (and/or other medical conditions) conference is also deductible if you suffer from the chronic illness covered by the event. It will not, however, cover the cost of meals or lodging.

For more ideas on reducing your tax burden, please read:
- Kay Bell’s article “Maximizing Your Medical Deductions.”
- IRS Publication 502 - Medical & Dental Expenses