BEGINNINGS

My IC began just a few years after I finished graduate school when I was in a chemical accident. I regularly swam several hours a week at my local swimming pool. One unfortunate day in 1992, the club staff “bombed” the pool with massive levels of acid and chlorine. Unfortunately, they forgot to put the “closed” sign up. I swam just a few hours later and my bladder symptoms began that night.

I will say that I had a history of bladder sensitivity. In junior high school, I developed frequency that, after two years or so, resolved. In high school and college (B.A. Pharmacology from UCSB, M.A. Psychology-Organizational Development from SSU), I had no symptoms and was healthy enough to compete as a professional tennis player. I also have a strong family connection with bladder problems. My Grandmother, Aunt, Mother, Sister, Cousin and other assorted relatives have all had various bladder problems, though only my Grandmother and I ever received a diagnosis of IC. The others were told that they had “honeymoon cystitis” or “very sensitive bladders.”

My first diagnosis after the pool incident was “chemical cystitis.” Yet, over the following year, I had more and more flares. First once, then twice a month. It quickly became weekly and then, finally, progressed to daily symptoms. It became a struggle to work and just driving in the car would leave me in tears. Like so many of you, I didn’t understand what was wrong with me. I had no idea that the bladder could hurt so badly and was worried that it was cancer. I felt alone and isolated, as if noone else could possibly understand the pain and despair that I was feeling, especially in the middle of the night when I was unable to sleep and cried buckets of tears. I was so scared and overwhelmed. It was a devastating period of my life. But, in the Summer of 1993, I experienced hope when I finally met another IC patient.

TWO BASIC CONCEPTS

This is worth saying several times. Talking with other IC patients is so important. It reminds us that we’re not alone and it can tap into a body of knowledge and coping skills that some care providers may not be familiar with. For example, my first IC friend told me about the IC diet and how important it was for me to protect my bladder by NOT introducing irritating acidic foods, like coffee, cranberry or soda. I drank cranberry juice by the gallon that first year. Arrghh! No wonder I got worse. I was pouring acid on the wounds in my bladder every single day. By stopping that alone, I was able to reduce my dietary flares dramatically.

The second thing that she gave me was permission to stop and rest. I was forcing myself to walk, to exercise (Did I say that I was an exercise nut?) and to be with family or friends, despite the fact that, many times, it exacerbated my pain. Why? I didn’t want the IC to “win.” I pushed and pushed and cried and cried. But, as she said, pain is a signal to our bodies that something is wrong. We would never run a marathon on a broken leg, so why do we try to run a marathon on a broken bladder. I realized that I had never stopped and just rested. I finally gave myself permission to say “No” if my bladder hurt. What a concept.

These two pearls of wisdom helped me survive and gave me the chance to see that there was hope. Believe me, I needed it. It just seemed that 1993 was not the year for me. Despite my position as a fund raising manager with a major non-profit, my boss didn’t believe that I was sick. I was told that I came from “weak stock” (she really said that!) and that I didn’t “look sick.” I was constantly defending my need for doctors visits, especially those weekly DMSO treatments. That summer, I lost my job in a downsizing which targeted only disabled employees. Long story but I’ll give you the end result. I filed several disability discrimination complaints, testified up in Sacramento on the status of our state’s Dept. of Fair Employment and Housing, and finally settled the case five years later. Oh, did I mention that my boyfriend left! He had lost his mother to cancer and just couldn’t cope with having a sick girlfriend.

GOOD THINGS HAPPENED TOO!

Yet, in the face of this adversity, a lot of really good things happened to me. My family became closer than ever before. My parents are my heroes. Both retired, they helped in so many ways… mostly just encouraging words, hugs and patience. On the days when I could barely walk, they always drove me to the doctor. They didn’t pressure me to attend family events, holidays or parties. They gave me time and let me heal. I will never be able to pay back to them the support and love that they gave to me.

I was also blessed with an outstanding team of doctors. The first urologist that I saw, Dr. Mark Klein, not only believed in IC (yes, I was really lucky!), but was pretty up to date on therapies and treatments. We tried lots of different treatments and even made a referral to a UCSF Medical Center for an experimental program run by Dr. Marshall Stoller. I did get better slowly and steadily as we found the therapies that worked for me.

A big part of my recovery was doing a voiding diary. For most of 1993, I did a daily voiding diary to help me track how I was feeling. By doing that, I was able to see my normal monthly flares and to stop worrying about them. For example, I learned that I usually flared when I ovulated and before my period. But, I could also see that those flares always resolved and that they weren’t worth a frantic call to my doctor every month.

My voiding diary also gave me the chance to see which treatments worked and which didn’t. DMSO, for example, did nothing for me.. but hydroxyzine slowly and steadily decreased my night time voids, flares and frequency. One of the best parts about doing a voiding diary was that it made a case for having some pain care. Doctors usually can’t prescribe pain medication without first documenting the need for it in a patients medical records. A voiding and pain diary is an excellent way to do this.

It’s now 2005, and thirteen years since the onset of my IC. My life is good. Yes, I still have symptoms on occasion. As long as I watch my diet, pace myself AND catch flares early, IC rarely interferes. The biggest limitation that I have is that I’m not a fan of riding in a car over a long period of time but I finally found the perfect IC car, a Buick Rendezvous, with such a smooth suspension that it rarely aggravates my IC. I found a used 2004 CXPlus that saved me more than $10,000 off the list price.

THE BEST OF IC FRIENDS

The friends and acquaintances that I’ve met in the IC community were an unexpected joy. You could not find a more caring group of people around the world. I especially appreciate the friendship (and efforts) shown by each and every ICN volunteer and staff member. I’d like to mention a few, in no particular order.

DIANE MANHATTEN was the very first patient to believe in my work and to volunteer on our site! She worked for over eight years to help the IC Network grow before she unexpectedly passed away from empheysema in 2003. She is now our proud guardian angel. Diane proved that IC patients can make a difference. Even though she had a very humble educational background, she learned many new, advanced skills to help us build this site, including computer programming. Not bad for a woman who proudly worked as a waitress and was the “Santa’s Elf” every year in the holiday parade in South Plainfield, NJ. Her husband Russ was a delight!

BEV LAUMANN , former Orange County IC Support Group Leader & author of “A Taste of the Good Life: A Cookbook for an IC Diet” who has written dozens of “Fresh Tastes by Bev” columns on the IC diet for our website and newsletters. Bev is, in my opinion, one of the top IC patient advocates in the world today. Her knowledge of IC research and her zest for information is amazing. I’m so appreciative of her wisdom, her guidance and for being a calm port in this IC storm!

DONNA KORN has been a very special friend, a calm and steady force on our site for years. Donna very generously manages our volunteers & message board system with compassion and great kindness. She does the most amazing job managing a community of more than 10,000 IC patients! Wow! I cannot express how grateful I am for her time and efforts. She’s a miracle!

The large team of SUPERMODERATORS (Alexa, Dyno, Julie B, Sarojini & VM) and MODERATORS who do an awesome job creating a safe place for IC patients to gather in our message boards!
LESA FERENCZ is also one of our earliest volunteers and she created the ICN Pregnancy Journal which has encouraged hundreds of IC patients who are having children. She and baby Kaitlyn are doing great! A special note of gratitude for MELANIE who created a great checklist for patients considering pregnancy!

LESLIE & KATHI , our live chat team, have offered hundreds of live IC support group meetings in our chat room.

GAYE & ANDREW SANDLER , a dynamic duo of activists, who co-wrote “Patient to Patient: Managing IC & Related Conditions” and have penned our relationship column “IC Lifestyles.”

FRANNIE ROSE, author of the book “Ask Frannie” and the “Ask Frannie” monthly columns with this same title who writes, beyond a doubt, the most serene and comforting advice columns. Frannie is like a cool breeze on a hot day. Every time I talk with her or read one of her columns, I feel refreshed, comforted and inspired. She is truly a rare gift to the IC community.

ANTHONY WALKER, former Executive Director of the COB Foundation (UK) who was the first international IC group who expressed a willingness to work with me and to support some of my ideas about international collaboration.

THE SPONSORS who believed in my vision for the IC Network, most notably Alan Kligerman, President of AkPharma, Inc., who has supported our work and site for years! Farr Labs, Alza Pharmaceuticals, Healthy Life Harvest, Astratech, Algonot, Puroast Coffee and, most recently, The Natural Bladder, LLC. We wouldn’t be here without their financial support!

A DESIRE TO MAKE A DIFFERENCE

IC also gave me the chance to make some important and often hard life decisions. It helped me walk away from some poisonous relationships that weren’t helping me during a time for recovery in my life. It helped me come closer to my faith. It gave me the chance to reflect on what I wanted to accomplish in my life. Most of all, it helped me to believe that, regardless of my affliction, I could make a difference. I still have my hands, my brains and a new, renewed sense of determination. I am very proud of what we’ve accomplished.

I’ll leave you with a quote that I keep on my desk:

“When we cast our bread upon the waters, we can presume the someone downstream whose face we may never see will BENEFIT from our action, even as we enjoy the gifts sent to us from a donor upstream.” - Maya Angelou

As you make your IC journey, please remember that your actions count and reflect on all of us. Our collective job is to legitimize IC and our need for compassionate care. As you use the ICN, I hope that you will share the information on our site with your physicians, families, friends and support group members. There are still millions of others with IC who are being told that there is no hope. They have no idea that there are new treatments or even basic diet information. There are physicians (especially primary care providers, family medicine & emergency room staff) who are unaware that IC is a legitimate disease. We must reach out and educate as many people as we can.

Jill Osborne, IC Network Founder
Age 46, Diagnosed at 33
Support Group Leader since 1993.
M.A. Psychology 1988 - SSU
B.A. Pharmacology 1982 - UCSB

MORE INFORMATION ON SANS

(May 2005)
A number of patients over the years have asked me to share my experience using the Stoller Afferent Nerve Stimulator (SANS) procedure. Also known as post-tibial nerve stimulation (PTNS), it was developed by Dr. Marshall Stoller at the UCSF Medical Center as an alternative to the more invasive Sacral Nerve Stimulation (SNS aka Interstim) that had also been developed at UCSF.

Dr. Stoller became interested in this while observing the difficulties patients experienced while doing SNS. Rather than requiring electrode placement in the sacrum which, at that time, was excruciating painful for those early Interstim patients, he suggested stimulating that same nerve where it was closest to the surface of the skin… which is just a few inches above the ankle. Using just an acupuncture needle as a vector to the nerve along with a basic TENS unit, Dr. Stoller discovered that he could also stimulate the nerve and create beneficial effects in the bladder and pelvis, most notably a dramatic improvement in blood flow in the region. You can read more about the theory of PTSN how SANS works in Dr. Stoller’s guest lecture on our website!

I had roughly 30 treatments overall. For the first 10 treatments, I travelled to San Francisco to his office. First of all, let me just offer that this was the easiest, least painful therapy that I had ever tried. There was no disrobing, no catheters or fluids placed in my bladder. It was JUST a tiny, slim needle placed expertly (and at specific angles) above my ankle. Most of the time, I never felt it go in.

A TENS unit was then attached to the needle with a small adapter. It was then turned on and the intensity increased until I could feel the stimulation. It never hurt… it was more like a gentle pulsing. We always knew if the needle was in the right place because the stimulation would make my big toe flex downwards.

The TENS unit was kept on only on for 20 minutes per day. Dr. Stoller emphasized that “more was not always better” and, though I volunteered to keep it for much longer, he discouraged that. He didn’t want to overstimulate the nerve. Also, FYI, it should never be painful. If it is, it should be turned down immediately.

RESULTS:
I believe that SANS helped to break me out of the vicious pain cycle that I had been in for so long. After my fourth treatment, I had my first two hours without pain. After my eighth treatment, I had my first day without pain and, from that moment, my IC just slowly and steadily improved. Of course, I had lots of flares too, mostly related to my own stupidity with diet. Modifying my diet and avoiding those triggers also played a huge role in my recovery.

After 10 treatments, I was taught to do this at home. I continued to use SANS for about a few years afterwards… first once a week, then once every two weeks, then once a month. I think that I last did it about six or seven years ago though I still have my kit and wouldn’t hesitate to do it again were my pain and symptoms to get out of control once again. I have to say that last part of my recovery was also using the medication Vistaril (an antihistamine) which I began about two years later. It was the combination of diet, SANS and Vistaril that brought my IC under near complete control and gave me the ability to function normally again.

CORPORATE DELAYS:
Unfortunately, the company which was to bring SANS to market (aka Urosurge) went out of business thus creating a several year delay. (Dr. Stoller still performs this procedure in his office using simple TENS units.) One new company, Cystomedix, has created a similar device called URGENT PC which they received FDA approval for about two years ago. But, they just did not have the resources to bring the product to market. In late 2004, Cystomedix licensed Urgent PC to a new company, Uroplasty, Inc. On August 10, 2005, Uroplasty announced that they had submitted a new FDA application for the use of the device with Overactive Bladder. Finally, we have PROGRESS in bring this product to the patients who need it the most!

CONCLUSION:
Ultimately, SANS is a viable, affordable nerve stimulation procedure. I’m a strong advocate because I’ve seen so many patients have difficulty doing the more invasive sacral nerve stimulation. Aside from it’s tremendous expense, the national, long term complication rate from SNS has yet to be published. As recently as July 2005, we’ve made yet another Freedom of Information Act requests for the data but have yet to receive it. (That’s another story all together.)

Post tibial nerve stimulation is very affordable, requires no hospitalization, and has few risks. Of course, if you’re stupid and put the device up too high, then it’s your own fault, eh? Remember, this procedure should not hurt. If it does, it’s not being done correctly. There have been a scattering of research studies on PTNS in the past few years, some of which found it helpful, others of which didn’t. You can research those on the PUBMED service.

GRATITUDE:
I am extremely grateful to Dr. Stoller. When I walked into his office that very first time, he compassionately acknowledged not only my pain, but also my desperation in wanting to get better. He BELIEVED that I was suffering and made a commitment to try to help me. By treating me with SANS, he saved me from having an unnecessary surgical nerve stimulation procedure. I cannot tell you how lucky I am NOT to have been one of those early, experimental sacral nerve stimulation patients at UCSF, some of whom suffered horribly from their procedures.

Revised: 08/10/05 - jho