IC Awareness Month

September is IC/BPS Awareness Month

October 4, 2014
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The WINNERS of our 2014 IC Awareness Month Poster Contest ARE:

FIRST PLACE – CHRISTY KEYES

Christy Keyes wins first place this year for a gorgeous yet satirical poster that utilizes color and text powerfully. Using a carnival theme, she shares the frustration that patients face every day as they struggle with a variety of symptoms and frustrations. Brilliantly done…. and the clear winner in this years contest!

2014 IC Awareness Month Poster Contest First Place Winner

SECOND PLACE – BECCA KEYS

Becca Keyes, Christy’s daughter, offers a delightful image with the most important message of all… that patients “believe” in the future and in themselves. She uses the color of IC Awareness Month beautifully!

2014 IC Awareness Month Poster Contest Second Place Winner

THIRD PLACE TIE – ADDY WILSON

Addy Wilson’s portrait shares the often invisible face of IC. That patients can look so normal on the outside and yet, on the inside, feel so helpless. We must always remember that the “inner” IC patient needs love, comfort, support and encouragement.

2014 IC Awareness Month Poster Contest Third Place Winner

THIRD PLACE TIE – NICOLE JOHNSON

Nicole Johnson entry is the counterpoint to Addy’s above. In it, she reminds us all that the gift of pain is empathy and compassion for others. She reminds us all that we are actually much stronger than we often realize.. and it is in that fight to regain our lives and reduce suffering that we truly shine.
2014 IC Awareness Month Poster Contest Third Place Winner

September 22, 2014
by icnjill
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IC Awareness Month Daily Fact #22: Interstitial Cystitis and Botox

IC Awareness Month Daily Fact #22 - Botox and IC

Botox is used for several bladder conditions

When most people think of Botox, they think about wrinkles, preventing aging and, after treatment, a face that is oddly expressionless. Ironically, though, Botox has been used for the treatment several bladder conditions. It is a Step 5 treatment option for IC/BPS in the AUA Treatment Guidelines.

What is Botox?

Botulinum toxin is neurotoxin produced by the bacterium Clostridium Botulinum. When found in contaminated meat, it can cause botulism, a potentially deadly disease in humans and animals. In 1928, researchers also discovered that it can block nerve transmissions. In the 1980′s, it was first used to treat some eye problems, including strabismus (crossed eyes) and uncontrollable blinking (belpharospasm). It has since been used to treat spasm of the lower esophageal sphincter, frown lines, TMJ, migraines, dystonia and patients with upper motor neuron syndrome, such as cerebral palsy. When injected into a tight muscle, botox can relax the contraction thus allowing for better movement and so forth.

Botox and the Bladder

In the bladder and/or pelvis, Botox has been studied with tight pelvic floor muscles (vaginismus), incontinence and IC/BPS. In the bladder, it is injected into the bladder wall in multiple sites during a hydrodistention procedure. Research studies have shown modest success. One study reported efficacy of 69% (1). Two studies reported high initial efficacy rates of 74% and 86% at three months.(2)(3) Another showed that frequency improved significantly at 3.5 months.(4) Effectiveness diminished over time, however, and at one year symptoms were indistinguishable from baseline values.(5) One study reported a low efficacy rate at 3 months with only 20% of patients exhibiting improvement.(6)

Risks & Potential Adverse Events of Botox Therapy Are Significant

Botox was placed as a Step 5 option for treatment because of the mixed results but also the risk of profound side effects. Some patients may be unable to urinate voluntarily after the procedure and may need to self catheterize for several months before the effect wears off. Thus, it is not an appropriate treatment for those who are unable to self-catheterize. Other adverse events including dysuria, straining and bladder retention. Botox has also been linked to far more serious side effects, including deaths.

Patient Tip: If you are considering the use of Botox, please carefully review the AUA Treatment Guidelines first and make sure that you have tried EVERY therapy in Step One through Step Four first.

References

  1. Smith JL: Case of the month. Interstitial cystitis. JAAPA 2004; 17: 48.
  2. Liu HT and Kuo HC: Intravesical botulinum toxin A injections plus hydrodistension can reduce nerve growth factor production and control bladder pain in interstitial cystitis. Urology 2007; 70: 463.
  3. Giannantoni A, Costantini E, Di Stasi SM et al: Botulinum A toxin intravesical injections in the treatment of painful bladder syndrome: a pilot study. Eur Urol 2006; 49: 704.
  4. Ramsay AK, Small DR and Conn IG: Intravesical botulinum toxin type A in chronic interstitial cystitis: results of a pilot study. Surgeon 2007; 5: 331.
  5. Giannantoni A, Porena M, Costantini E et al: Botulinum A toxin intravesical injection in patients with painful bladder syndrome: 1-year followup. J Urol 2008; 179: 1031.
  6. Kuo HC: Preliminary results of suburothelial injection of botulinum a toxin in the treatment of chronic interstitial cystitis. Urol Int 2005; 75: 170.
  7. FDA Notifies Public of Adverse Reactions Linked to Botox Use. Fda.gov. Retrieved on 2012-05-06.

September 21, 2014
by icnjill
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IC Awareness Month Daily Fact #21 – Anxiety and IC

IC Awareness Month Daily Fact 21 - IC and Anxiety Disorder

Got Anxiety AND IC? You are not alone!

It might surprise you to learn that anxiety is a strongly related condition to IC and pelvic pain. It was the human genome project which made the connection. Researchers trying to determine which section of the human genome correlated with anxiety discovered that a large, distinct subgroup of anxiety patients also had interstitial cystitis. Urologists then confirmed that most of their IC patients also struggled with alarming levels of anxiety. Subsequent research studies now suggest that there is a genomic linkage between the two conditions.(1)(2)(3)

The end result is simple. Most IC patients struggle with varying levels of anxiety. Some report that they’ve always lived with anxiety disorder and/or that other members of their family also struggle with anxiety. Other patients report that their anxiety developed after the onset of their bladder symptoms, suggesting that pain, fear and insecurity about the future might be driving their symptoms. In either case, you certainly aren’t alone. Anxiety disorders affect about 40 million American adults age 18 years and older (about 18%) in a given year, causing them to be filled with fearfulness and uncertainty.(4)

But, when anxiety starts to dominate daily thoughts and/or prevents someone from receiving good health care or enjoying life, it’s time to do something about it. There’s no shame in having anxious thoughts but we each have the responsibility to learn anxiety management skills so that we can live a full life and don’t become isolated from family and friends. There are many resources that can help!

References

(1) Weissman MM. et al. Interstitial cystitis and panic disorder: a potential genetic syndrome. Arch Gen Psychiatry. 2004 Mar;61(3):273-9.
(2) Chung KH, et al. Bladder pain syndrome/interstitial cystitis is associated with anxiety disorder. Neurourol Urodyn. 2014 Jan;33(1):101-5.
(3) Subaran RL, et al. A survey of putative anxiety-associated genes in panic disorder patients with and without bladder symptoms. Psychiatr Genet. 2012 Dec;22(6):271-8
(4) What is Anxiety Disorder. National Institute of Mental Health. Accessed June 19, 2014.

Living with IC Video on Anxiety

Additional Resources

September 20, 2014
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IC Awareness Month Daily Fact #20 – Exercise and IC

IC Awareness Fact #20 - Exercise and IC

Has IC or pelvic pain prevented you from exercising? If so, you are certainly not alone. Exercises which jar, traumatize or put pressure on the pelvic floor and bladder, such as: running, stair master and/or sitting on a bicycle. On the other hand, exercises which protect the pelvis and keep the hips level are ideal for IC patients. Swimming, walking, fast walking, yoga, pilates, elliptical and rowing are ideal for those of us with a tender bladder and pelvis.

What exercises work the best for you?
Does exercise improve or worsen your IC or pelvic pain symptoms?
We’d love to hear how you maintain your fitness!!

More Resources

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September 19, 2014
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IC Awareness Daily Fact #19 – The Cost of IC Treatments & Drug Assistance Programs

IC Awareness Fact #19 - Drug Assistance Programs

Drug Assistance Programs Can Help Patients Struggling To Pay For Treatment

There is no doubt that the cost of treating interstitial cystitis and bladder pain syndrome are increasing. Elmiron, the only FDA approved oral medication for IC, can now cost some patients more than $500 per month, if not more. Bladder instillations can cost several hundred dollars per treatment. Surgical therapies, such as Interstim, can cost over $100,000 if not covered by insurance.

There is no shame in not being able to afford these therapies… and, thankfully, a wide variety of self-help strategies that cost virtually nothing can help IC symptoms improve dramatically. Diet modification and the elimination of foods high in acid, caffeine and alcohol is essential. Over The Counter products may help reduce pain (i.e. ProSirona, AZO Urinary Pain Relief Tablets, Cystex, Tiger Balm). Food supplements (i.e. CystoProtek, CystaQ, Cysto Renew, Desert Harvest Aloe) have such a solid track record in the IC world that they are included as a Step One Treatment in the AUA IC Treatment Guidelines.

For patients who have no choice but to use some medication, you may also be eligible for the “Patient Assistance” or “Drug Assistance” programs offered by most pharmaceutical companies. Generally, applicants must be very low income to receive free medication from the companies. The ICN maintains a list of of these programs in our Drug Assistance Program Center.

Strategies For Saving Money on Medication

  1. Talk with your doctor - Ask for medications which are lower in cost, including generic medications when available. If you discover that a new prescription is beyond your budget, call your doctor immediately and ask if any different, less expensive medications, could work instead. Ask the pharmacist too! Be honest about your limitations. There’s no shame in saying that it’s too expensive. We don’t want you to choose between buying food and medications.
  2. Shop Around - Even if you have one favorite pharmacy that you use, it’s still important to contact other pharmacies for their prices, particularly for the more expensive medications such as Elmiron. Pharmacies in the same town may have dramatically different prices. If you find a lower price somewhere else, ask your pharmacist if his store will match that price.
  3. Partial Prescriptions - What could be more frustrating than spending $100 on a medication that, after you try one or two pills, you realize that can’t take due to its side effects. To avoid losing money, ask your pharmacist if he’ll give you a partial prescription first.
  4. Look for Generics - Several stores, such as Walmart and Target, began offering some (but not all) generic medications for just $4. Amitryptiline, for example, may be available at this cost.

How have you saved $$ while using IC therapies? We’d love to hear your suggestions so that we can share them with other patients!

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September 18, 2014
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IC Awareness Daily Fact #18 – Stress and Interstitial Cystitis

iC Awareness Month Daily Fact #18 - Stress and IC

Almost every IC patient learns that stress can exacerbate and/or worsen their IC symptoms. Why? When our body is under stress, the “fight or flight” mechanism is triggered. Our body prepares to fight for its life and/or to flee, even in situations that aren’t life threatening. The heart and lungs accelerate. Digestion slows and stops. Blood vessels become dilated in major muscle groups to prepare to run while blood flow is reduced in other parts of the body, such as the gut. Muscles also become tense, particularly the pelvic floor.

Prolonged stress can cause many physical and emotional effects, such as: headaches, chest pain, fatigue, upset stomach, problems with sleeping AND URINARY PROBLEMS. Psychological effects such as anxiety, restlessness, irritability, anger and depression can occur. The most dangerous aspect of prolonged stress is suppression of the immune system.

For the IC patient, physical stress such as a car accident, exposure to cold weather, prolonged vibration while riding in car, or even a fall can trigger symptoms of frequency, urgency, pressure and/or pain. Patients also report flares after major emotional events, such a death in the family, divorce or stress at work.

Given the reality of stress in our lives, the most successful IC patients build good stress management skills, including: relaxation, exercise, meditation, gentle yoga, classes in stress and anxiety management and so forth.

Additional Resources

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September 17, 2014
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IC Awareness Daily Fact #17 – Men With IC

IC Awareness Month Daily Fact #17 - Millions of Men Have IC/BPS

Interstitial Cystitis (IC/BPS) affects men of all ages, from high school students to seniors, air force pilots to Hollywood actors. Many, if not most, have been misdiagnosed with chronic prostatitis, often for years, before they receive a correct diagnosis. You might also be surprised to learn that IC/BPS has been tracked in high numbers in active duty military personnel returning from Iraq & Afghanistan.

In 2013, the results of the RAND epidemiological study determined that up to four million men in the USA have symptoms of IC/BPS, roughly double those diagnosed with prostate disorders. It is real and it is treatable. (Source: Suskind, A., et al. The Prevalence and Overlap of IC/BPS and CP/CPOS in Men. The Journal of Urology, v. 189, no. 1, Jan. 2013, p. 141-145)

Dr. Robert Evans (Wake Forest University, Greensboro NC) has treated men with IC/BPS for the past twenty years and has passionately spoken on their behalf. He said that the majority of men diagnosed with chronic prostatitis may, in fact, be misdiagnosed and mistreated IC patients. He said “If those patients who were told they have prostatitis and didn’t respond to antibiotics or told they have prostatodynia (prostate pain) were studied, the vast majority of them… would have IC.” Sadly, many physicians simply do not consider nor go beyond the prostate to examine the health of the bladder.

Men also face the same obstacles that women do. Some report that they have been treated with hostility by their medical care providers, particularly if they ask for pain relief. Men may also struggle with family criticism and a spouse who may not believe they are in pain. Men can also become lonely and isolated because they may be unwilling to share their struggles with friends and colleagues.

In our 2014, we continue our advocacy for men struggling with IC/BPS. You are not alone. We are here. We care! We’d love to hear your stories.

More Resources For Men With IC/BPS

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September 16, 2014
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IC Awareness Daily Fact #17 – IC Makes Sleep Difficult

IC Awareness Month Daily Fact #16 - Sleep is Difficult

IC patients often experience their most uncomfortable symptoms at night when distractions are fewer and they notice their bladder symptoms more. They may feel a constant need to urinate or an uncomfortable sensation of bladder fullness that is very difficult to ignore. Getting up once or twice a night might be manageable but having more frequency can certainly be disruptive and rob a patient of essential rejuvenative sleep. Some patients have even resorted to sleeping in their bathrooms. The good news is that there are many therapies and self-help strategies that may help!

Tips To Improve Sleep Quality

1. Follow the IC Diet.

Night time sleep quality is often a direct reflection of foods eaten during the day. If you’re still drinking coffees, green teas and sodas, this could easily explain your higher pain and/or difficulty in finding sleep. Caffeine and alcohol, in particular, can be irritating to the bladder.

2. Treat your Pain.

Pain and sleeplessness can be an IC patients constant companion. When pain is intense, it is virtually impossible to sleep comfortably and if you don’t sleep well, that can also intensify pain. Thus, breaking the pain cycle is important. Some patients use OTC products, such as AZO Urinary Pain Relief Tablets, to help break the pain. Others find that products such as ProSirona or Tiger Balm can help. But, more intense pain may require stronger pain medication, such as an opiate. If the OTC products aren’t helping, then talk with your doctor about your pain and need for sleep. A referral to a pain specialist may be important.

3. Calm and Relax Your Pelvic Pain

Tight, spasming pelvic floor muscles can certainly trigger night time discomfort. Many patients find some comfort by taking a hot shower before bed and/or using a heating pad to relax the pelvic floor. (Just remember that you should not fall asleep with an electric heating pad on UNLESS it as an automatic shut off timer. Burns can happen.) Using a Guided Relaxation CD as you try to sleep could be very helpful in relaxing the pelvic floor.

Some physicians may suggest using a muscle relaxant, such as Baclofen, Flexeril or Valium to help relax tight muscles.

4. Medications

Some IC treatments can be quite helpful in improving sleep quality, particularly hydroxyzine (Atarax, Vistaril) and amitryptiline (Elavil). Your doctor may also suggest medications that might help improve sleep duration, such as Ambien. These require careful discussion with your physician about the pro’s, con’s and potential interactions with other medications you may be taking.

5. The Basics

Don’t underestimate the power of simple self-help strategies such as:

1. Quitting smoking. Nicotine is a stimulant that can keep you up.
2. Exercise during the day can help improve night time sleep.
3. Eat a light snack before bedtime!
4. Open the window and let a cool breeze in.
5. Lose the cell phones/ipads and games in bed!
6. Try listening to a book on tape or some relaxing music.

Patient Tip: If your sleep quality continues to be poor and/or worsens, please make an appointment with your urologist and/or primary care to share your struggles and/or discuss more treatments. Everyone deserves a good nights sleep!

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September 15, 2014
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IC Awareness Month Daily Fact #15 – Disability and IC

IC Awareness Fact #15 - Disability Benefits

Patients with more severe IC who are unable to work may apply for disability benefits in your state our country. In the USA, there are four different types of disability insurance.

Private Disability Insurance

Private Disability Insurance is usually obtained through your employer if they offer disability benefits. In general, private disability insurance kicks in one you meet the criteria for SSA disability (see below). If you are currently working, check your personnel policies and/or any related materials to see if your employer offers disability insurance.

State Disability Insurance (SDI)

State Disability Insurance (SDI) is offered by several US states for residents. SDI is usually a transitional rather than long term disability program, the goal of which is to assist you in returning to work (i.e. after an accident or pregnancy) or to provide benefits during the often lengthy SSA application period. To research whether your state offers disability benefits, check your phone book under State Government Listings and/or contact your local State Representative’s Office.

Social Security Disability Insurance (SSDI)

SSDI is a federally funded program offered by theSocial Security Administration (SSA). Your eligibility for SSDI (and Medicare) depends entirely on your work record and whether you meet SSA’s reported income guidelines. Roughly speaking, you must have worked five of the past ten years. The amount of money you receive under SSDI depends on how much money you paid into the Social Security system.

Supplemental Security Income

Supplemental Security Income (SSI) is a needs based federal program available to individuals with very limited income and few, if any, resources. There are no financial income or resource limitations for SSDI. It is also run by the Social Security Administration.

Patient Tip – One key element of any disability application is evidence or proof of your symptoms. A voiding diary is an excellent piece of evidence to give to your doctor to include in your medical records AND to submit with your claims. Voiding diaries help document your urinary frequency, urgency and pain level.

Patient Tip - Appeal! Appeal! Appeal! While Social Security Disability is notorious for denials at the application stage for ALL disabilities, patients can (and should) appeal their decisions and often win benefits.

Additional Resources:

ICN Disability Resource Center – offers SSA Application Process Tips, An Appeal Success Story, How to Find an Attorney, link to the SSA Ruling on IC/BPS.

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September 14, 2014
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IC Awareness Daily Fact #14: Bladder surgery is rarely used for IC/BPS

IC Awareness Daily Fact #14 -

Bladder surgery is rarely considered for the treatment of IC. In the AUA Treatment Guidelines, surgical intervention is classified as a STEP SIX treatment. Using those guidelines, the patient should have first tried and failed treatments from STEP ONE through STEP FIVE, including diet modification, OTC supplements, oral medications, bladder instillations, physical therapy, Hunner’s lesion treatment and some experimental therapies (i.e. botox).

A substitution cystoplasty can help increase bladder capacity by using a section of the bowel to enlarge the bladder. A urinary diversion can bypass the bladder. Bladder removal (aka cystectomy) is only considered in cases where the bladder is severely damaged and/or has minimal bladder capacity.

Patients considering surgery should do a careful review of the pro’s and con’s of the procedure. It’s also important to talk with other patients who have gone through the procedure. The ICN Support Forum offers several discussion areas on all treatments listed above, including bladder removal.

Additional Resources