My IC Story - I Didn't Give Up

[icnmgrjill]

(I've had several people ask about how my IC started so I thought I'd reprint my story here! -Jill)

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. :loco: I swam just a few hours later and my bladder symptoms began that night. It felt as if I had burned my bladder badly and, in actuality, that's what happened.

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. :confused: 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. 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. :bonk:

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 2006, and fourteen years since the onset of my IC. My life is good. Yes, I still have bladder symptoms on occasion. As long as I watch my diet, pace myself AND catch flares early, IC rarely interferes. The biggest change that I've had in in the last year is that I had a major recurrence of my IBS triggered because I had started to drink some coffee again in the Fall of 2005. By last winter, I said to my doctor "I feel as if all of the nerves in my gut have been turned on." I really did a job on myself. The good news, though, is that as I cruised the web for IBS support, I found www.helpforibs.com, run by Heather Van Vorous. In just an hour, she taught me more about IBS than I had ever learned. Following her tips on diet (and not starting any meal with an insoluble fiber like salad!), I finally have my IBS under control again. Thank you Heather!

The Best of IC Friends :grouphug:

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.

- 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!

- 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!

- 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! If not for them, I'm not sure where we would be. They are the GREATEST!

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

- 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.

- 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, The Natural Bladder, LLC and, more recently, Desert Harvest Aloe. We wouldn't be here without their financial support!

- 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. She is now our proud guardian angel.

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. :woohoo:

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.

[BeachBaby]

Thanks for this Jill!

It is so important for the patient stories to be updated and read from time to time. To read yours, in the days of "pioneering" awareness as it were, is particularly insightful.

It is also a great reminder of not giving up!!! I know that is so easy to say when things are okay, and so hard to believe in when IC just feels as though it has one an unnamed war! But it is so great to understand why and how you are here, and because of you why the rest of us have this amazing place to come.

It was so nice of you to include so many of the people who help make things tick! Aside from everyone mentioned, I just want to add that beside the support and chats I have had with you, either by email or on the phone, that I am incredibly grateful for Donna!!! I know I am far from alone in that, but while you are manning the behind the scenes efforts of this board and the business that supports it, Donna is always there to just lend an ear and balance out the threads.

We/I appreciate you both more than can possibly be said. Thanks for this re-peek into your journey and the path that led you and eventually all of us here!:pray:

[waterflow]

Broken bladder. That's it, it makes so much more sense now. It gives the IC some kind of meaning to me now. I don't have a weird bladder but a broken one. why can't the bladder be broken like other body parts? I will try and remember what you said. Not punish myself for not getting things done that I normally could do with a well bladder. I think all doctors should use that phrase "broken bladder". I think it would make it easier on some.
I didn't relize how many people it takes and all the hard work you all do. Keep up the good work! :)

[Cheries]

Wow, I didn't realize you went to UCSB! I grew up in Goleta, California near Elwood area. Isn't it beautiful out there? My parents still live out there. Some of my friends parents were UCSB professors.

I was diagnosed in 95 but have had IC much longer. I guess I need to post my story here eventually.

I think I have learned more on this site than anywhere. It has been a source of great information and support. I can't thank you enough for what you have done. You have literally changed many of our lives by your advocacy and willingness to volunteer your time and effort to this project.

Thank you thank you THANK YOU!!

[melanie626]

Your story is touching, thanks for sharing.

Your hard work and tireless energy keep many of us going. You have taken a bummer of an illness and offered information and support to those who have it as well. Many thanks for your efforts!!!

[mela414]

Jill,

Wow, I really needed to read that! The same thing happened to me with the pool. I had been having bladder problems my entire life and then later on in lifeI got sent off to the gyno for endometriosis...(which I am not sure I even had). Anyway, I used to swim everyday at the pool at my health club. I never had a problem with swimming and loved it so much! I still had pelvic pain but was on Lupron so I was still able to swim. In 2000 I had moved into a development that had a pool. I remember having a good day and going for a bike ride. I decided to finish the afternoon off with a swim in the community pool. I was so excited! After coming home and showering, this intense pelvic pain started! It was the most torturous thing I ever imagined! You know the agony of the pain I am describing! I got my diagnosis of IC shortly after that by doing a lot of research and a lot of complaining to my GYN. Eventually I went to Dr. Whitmore who diagnosed me. I have yet to find a treatment that helps because of the many food intolerances and multiple chemical sensitivities but reading your story is inspiring. There are days I want to run away from everyone and give up. I feel that I can't do it anymore. Especially, with all the other health problems. My pool swimming days are over! I can no longer go into a pool without having severe pain. This is a big loss for me but I try to get to the beach whenever I am away instead of the pool. It's just embarrassing when people want you to go in the pool and you can't. It makes me feel so left out and "abnormal". Just writing this makes me tear up.
I pray for the day that all of us can have healthy bladders. Thank you for this wonderful place to come. Both for sharing information and finding support from others who share the same pain.

[maryla]

Thank you Jill. I can relate to the fact of literally doing way too much and paying dearly for it later. That seems to be my biggest challenge in learning to pace myself and letting it be okay, if for example, I can't cook supper tonight or what ever it is that I "THINK" I NEED TO DO. I too have always been very out going and active in work and in play. But I haven't worked in a couple years because of my "broken" bladder and am flapping around like a fish out of water adjusting to this NEW life.

It's just nice to be able to come here and share with the world our stories. Which I do need to write when I'm ready of course.

Again, Thank you All for all that you have done and all that you do!!! I have no doubt that this site is a God send to all of us!

God's Graces,

[Freckles]

Wow, how did I miss this post from Jill.

How I needed to hear this today. I guess that's why I hadn't seen it before. God knew I'd have a day of desparation when I needed to hear and read Jills words. Today is it. I'm sitting here crying hoping that too at some point I will find some relief. I'm so happy Jill that you have made such a great recovery. I like you have had some benefits from the disease. Yes, a stronger comittment to God. Isn't it sad that this is what it took for me. I can honestly say though that if it took IC to show me how wonderful God is, then I am happy to have it. Although I'd be lying if I said I didn't pray all the time for a cure, a miracle of some sort.

I think our biggest obstacle in getting relief from this disease is our doctors. If only someone would step in and make these doctors listen to us. What on earth can we do about it? Jill, please let us know who do we turn to. Can we write someone? Should we complain to our insurance carriers? I'm not too confident that those letters would even be looked at. All I know is that I would do anything to save one person who has this disease from all that I have gone through trying to get help. I would. I would travel anywhere on my own money (what little is left) and stand before any committee, agency, whatever if I could make a difference in another IC'ers fight for help. Jill, I'm your girl if you ever need me I'm here. I may not have much but I would gladly travel anywhere to fight for anyone on this site. I truly don't think I would be here today had I not found this site. I knew about the ICA, but never knew about this site and just kind of accidently found it once. I'm so glad I did.

I'm so glad Jill that I came across this today. Thank you Jill

Karen

[Judith67]

Thanks Jill for such a heart rending journey into your "Broken Bladder" and history of when and how you were diagnosed.

This is my first time to reply to any post. There's so much wonderful info on this site and I feel so blessed to have been referred to it by a friends sis who has IC. Jill, I can't even imagine how those of us who have IC could find the hope anywhere else, than what we've found on this site. Thank you so much for all the hard work and words of encouragment that we find here.

Little by little, I'm continuing to find so much good info and just recently ordered Algonot+. This is my 4th day with it and it seems I'm having some relief already if that's possible.

God Bless...Judith:)

[Georgia L]

Hello,
I am so thankful that I found this site. :pray:
My doctors have told me for a long that I need to find someone that can relate... that has the same or similiar symptoms ... so that I don't feel alone. Just by reading the other messages posted... I already don't feel so alone.
My story... short version:smile tee
I was born with little to non-existant ureters in 1973. I had artificial ureters implanted in 1976 and thus began my now 33 years of "sickness". As a child, I had repeated bladder and kidney infections, stomach trouble, and a low immune system... these and other ailments have followed me into adulthood. I like many of you have gone the gammet of it is a bladder infection, no it is endometriosis, no maybe it is scar tissue, to the well dear it really is all because you are overweight and depressed :loco: duh I would think... I hurt all the time, I pee fire, my joints are killing me, I have no energy to exercise, and shucks I have no idea why I am depressed!
I went thru many endoscopes to find out I had a hiatial hernia and reflux... thus the beginnings of my ever growing medicine cabinet. I went thru surgeries ultimately resulting in a total hysterectomy at age 31! Praise God for my one miracle daughter! I have recently been diagnosed with IBS = meds, non=ankloysing spondylitits = meds, fibromyalgia = meds, and IC = meds. My husband hates I take so many meds :loco: shucks me too.
After the IC diagnosis, I saw a specialist about the interstim. I saw a few postings on this and would really love to know some of your experiences. I am scheduled to have the trial one done a week from today.
I have had to taken leave from work (teaching school) and it is difficult to simply be a wife, mother, and human with all of the pain and lack of energy. Again thank you for being there to listen and it is a blessing to know that I am not alone and it is a blessing to know that HE can heal us! In His time... but he can.
Blessings, GL

[tracy3434]

WOW, what journey you have had. Thank you so much for sharing your story and creating this place of hope for people like me (that often feel isolated, alone and depressed). You are truly an angel.:angel:

[stac7_8]

:cussing: I want to first say thank you for ur story. I have just been dx with ic. I'm very scared and concered right now. :help: I'm a lil chunky and love to eat. I have been thinking back about my life and I have always had UTI's just thought either go to the dr or start AZO and cranberry juice u know. Now all of a sudden I have been told that I can't eat what I like or drink what I like cause it is not good for me.

Basically here is what has happened in the lst 2 1/2 yrs. I gave birth to my second child and started having pains so bad that I ended up in the ER. I ended up having to have surgery and have a tumor removed along with an ovary. The pain continued I got PG with my 3rd child and delievered this past Sept. I have been in pain almost every day since. In December my "old" obgyn decided that I needed to have a Hysterectomy. When she went in I had a cyst the size of a man's fist on the other ovary. So that was good. I thought after that I would not have to pop pain pills anymore.:tsk: That of course was not the case. Like I said I was just DXed this week. I went to a "new gyn that I found for a second opioion. At first he just wanted to do a lap and take a look inside. Well what happened was my mom read in Women's day mag about it the night before I had my preop appt. So I went in the next day and talked to him about it and he did a procedure on me by putting in some med inside my bladder and that stuff hurt so bad. So now I'm supposed to go in weekly to have this other med put in my bladder to numb it. And he also started me on Elmiron. I just started to med yesterday and I'm having very bad Miagraines.

Like I said when I started I'm scared and not sure what is going to happen. I would truly like to know what kinds of foods u eat and what do u drink? I have started a notebook of when I eat and what and when the pain starts and how bad. Also how often I use the restroom. Anything u may be able to tell me is much welcomed. Thank u for ur time

[tracy3434]

I was diagnosed last Nov with IC (after about 10 months of different doctors and mis-diagnosis, and lots of drugs). I was scared that I was going to have to live in pain for the rest of my life. I started to see a therapist to help deal with my emotions (I would cry ALL THE TIME), but I am much better now.

I started taking Elmiron about 4 months ago and about a month ago I started to feeling "like me" again. I have had a few "flare ups" that last a few days - and I am learning what I can and can't eat. So far the only thing that effects me badly is fruit and juice. I was worried that I would have to change all my eating habits - but that has not happened. Best suggestion is write down everything you eat and drink and also write down how often you go to the bathroom. This will help you keep track of how foods are effecting you.

Important thing to remember is that - YOU WILL BE OK. There are days when I would just cry and not want to get out of bed. But, now that I know there are good days, I can deal with the "flare ups". This web site is wonderful and inspiring and full of great info.

Hang in there! My prayers are with you.

Tracy:hi:

[Kathi]

Jill, As always, you are the guiding force behind this wonderful website. You truly are the wind beneath our wings:angel: I can't describe what finding this site was like when I was first diagnosed & my love & graditude will always be with our angel Diane. She was the first to welcome me here & with her encouragement I continue to be here. I, too live a life tht is almost always manageable, so please alll of you who are not doing well right now, take heart, for most of us it does get better. Hang in there & remember you are not alone. It is with great pride that I am a small part of helping those in need, ,because of those that helped me. It is a wonderful thing to hope you can give back a little. Hugs, to all, Kathi
Come join us in the chat room as soon as you can on our chat nights. I always post them on chat day.:hi: :welcome:

[Moonheart]

Amen! I am so thankful for this site...so truly grateful. It has made an amazing difference in my ability to cope. I lose my temper less with my kids and feel like there is at least some hope.

Thank you so much and God bless!

[dianna_rose]

:hi:
Hello everyone! I am relatively new to ICN and I am thankful to God that He led me here! One of these days, when I am not having a severe flare, I will tell you my story, for what it's worth, just to emphasize to those coming after me that we all have a common thread, no pun intended...

Jill, you are a rock. And I also have to be thankful for my uro for his wisdom and care. He is the turn-to guy in my area and keeps a careful eye on his IC patients. Thank you, too, my new friends, for the support and warm welcome you have given me. I now realize that I have to make some real changes in my life in order to HAVE a life, and it gives me hope to see that there are far more others like me than I could have even believed. Jill, thank you for the vision you were given and the tenacity and desire for knowledge that shows in every corner of this place.

Right now in my life there are family and church members who do not understand my broken bladder. I am really struggling with who I am now, and remembering all the dreams I had and all the activities I was involved in that no longer interest me because of the depression. Nobody calls, except for one friend who thinks I am avoiding church and I am weak, but she prays for me anyway. I want to get to that place again where there is joy in life, and I can again be an encouragement to others. With all of your help, I'll get there somehow! Thanks and blessings all around.
:kiss:

[tracy3434]

Hang in there dianna! I know how you feel about missing all the fun activities you use to take part in. When I first was diagnosed and thing were very bad (and before my diet was under control and the meds kicked in), I quit my gym membership (I would go every morning before work for years), I stopped going to dance class, also stopped going to church and was not social with any one of my friends. Just going to work was a complete struggle. I cried a ton of tears. Now that I am feeling better and am learning how to live with IC, life is much better. I am back to exercising (taking walks every morning), and slowly getting my social life back. Just remember God did not bring this pain to stay, he brought it "to pass".:pray: Take care and never give up hope.

[tigger_gal]

Jill, Thanks for reposting your story :)

[vsspencer]

Dear Jill,
My name is Susan and I live in the Los Angeles area. Yours truly was a touching story. I can so relate to the helpless fear that comes over you when dealing a chronic disorder that there seems to be no cure for. I was diagnosed only a week ago and am struggling greatly. You offered me hope that I will once again enjoy some quality of life. Right now the doctor is trying anti-depressants and antihistamines, which have offered litttle help. The side effect for Elmiron sound pretty scary. Any info you would be willing to share regarding the treatments that have worked for you would be greatly appreciated. :help:

[Texas Baby]

Dianna,
I went thru alot of the same things that you are going thru,espcsially with my church friends. They didn't understand. They were the ones that didn't call and I felt so alone when I was around them because they didn't understand, But God blessed me with a mew church family and a small group of friends that is closer than family and this wonderful wonderful lifeline here that Jill has started. I have had so many blessings from just reading what other people have written as well as posting,i pray that the same will hold true for you. This is a great group of people that post here, I am glad you are a part of it too!
Blessings!
Eva

[dianna_rose]

Thank you so much for the encouragement. I am gobbling up all the information I can by reading all the posts. I just found out yesterday that I react to bananas--fancy that! It's been a long time since I have had a circle of friends who take me for who I am. I'm married to my pastor's son and it's always felt like I live in a glass house.

I have a little tip for the hair loss that some of us have with Elmiron. I used to have a really thick head of hair and I lost half of it with the Elmiron, but then my hairdresser suggested I use Nioxin shampoo and conditioner, and within 3 months, my balding spots filled in. You can get it at any beauty supply store. just throwing a couple of cents in, for what it's worth.

Blessings!
Dianna

[Muffie]

Tracy,
I have just been diagnosed with IC and I finally started seeing a therapist because I am just so sad about it and I have so much anxiety. I keep trying to tell myself that I will find relief but sometimes it's hard to realize that when you're in the middle of a flare. I have always wanted to have a baby and now I feel like that may never happen. I know that woman with IC do go onto have children but I'm just so scared. Thanks to everyone in this community that has been so nice and helpful and for just sharing your stories. I really appreciate it.
Kim

[dianna_rose]

Jill,
It sure is a small world! I used to be an Asst. Mgr at the Macy's here, in the Cosmetics Dept. and my line was Clinique. The dermatologists in the area would send some of their patients to me and it felt so good to make those ladies feel better about themselves. Anyway, I'm glad that someone else got the tip about the Nioxin! It can be a little expensive, but the large bottles last me about 4 months. I got mine at the beauty supply but I'll do some research and see if there is a source online. I'll even see if they sell it on eBay, you just never know!

I had my annual eye exam today, and I was anxious to find out how my eyesight was doing, because lately everything has been so blurry. Turns out my sight is better than last year, but my eye movement is slower, causing severe eye strain. That makes things blurry. I was told it is definitely related to the IC/IBS/Diverticulitis that I have. my first thought was.......DUH!!

Blessings,
Dianna:dizzy:

[ICLori]

Jill, thank you so much for reposting your story. I've read it before, but it was good to read again. I know I haven't been alone when I've been up nights, crying because I was in pain and couldn't sleep. I know you've been there before, and you understand.

Blessings,
Lori

[dianna_rose]

Jill,
I just took a look around, and not only do they sell Nioxin on eBay, but ifyou Google Nioxin, you'll find lots of sites where they sell it, too. The "Actives" line is for non-chemically treated hair and the "Protectives" line is for chemically treated hair. Also, I live in a small town and can find it in all three of the Beauty Supply stores here. Hope this helps.
Blessings,
Dianna

[pen2005pal]

Thanks for sharing your story, Jill.

I'm glad that for the most part you are in remission, but for me, I have had this for 33 years. I can remember the pain as far back as 6 years old. After 17 years of urologists and doing everything short of suicide, nothing has worked for me. I didn't give up, Jill. I've never been a quitter type. I wish it was as easy as not giving up. I would much rather be healed than not. Last weekend I had the opportunity to be on national televsion and all I could do was sit in the far back of the studio because my pain was so bad. I had tried my very best not to quit and be healed of this chronic condition beforehand but my best was still not good despite my best efforts-- and hasn't been for the past 33 years.

Best wishes,
Susan

[ICLori]

Susan, the standard IC meds and treatments didn't work for me, either. In fact most of them irritated my bladder even further and made my symptoms and pain worse.

The only thing that worked for me was Cyclosporine-A, and it was too hard on my kidneys, so we had to lower the dose. In fact as of a few days ago, I am off it entirely, to try to give my kidneys enough time to recover.

I can understand where you come from when you say you've spent all those years not quitting, and trying so hard to get better.

The treatments don't work for all of us. Some of us find that none of the treatments work for us. There are people who have had their bladders removed, and even then, are still in pain. Sometimes there are just no easy answers with IC.

I pray every day for a cure, or at least a good remedy that works for nearly all IC'ers.

Blessings,
Lori

[kendra&joe]

I have forgotten how to post a thread, I know sounds crazy but either it's cause Joes not here to hold my hand or by shear luck I figured it out one time, and can't now :bonk: I 've done more reading lately than posting but wanted to post new thread about my new uro and get feed back please help Kendra:bow: P.S. thanks for this WONDERFUL SITE so many of us would be lost without it , know it's changed my out look on life!!!!!!!

[kepage5]

Thank you to everyone who posts their story here, it is nice to not feel so alone. I am so upset lately, I have been taking Elmiron for about a yr and a half, which has made my pain bearable, along with diet and urgent pc (Which has been awesome!!) but the elmiron is making my ibs unbelievably bad. I have to go off of it bc I can't take it anymore... I feel so frustrated like will the rest of life be like this, balancing my different issues and never feeling good? I am 21 and im getting ready to move to a different town for college, but right now I just can't see how Im going to continue like this if I don't get better.
Are there any older patients that have struggled with this since about my age? How do you do it? I want to be able to live my life and have a family but I don't want to do it if Im going to be too sick to take care of them...

I usually try to post upbeat things on here, but Im just feeling so frustrated lately.
I also pray everyday for a cure or a real treatment that won't have so many side effects!!:help:

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Susan,

Your post made me cry! Getting well isn't always a matter of our best efforts not being good enough. Sometimes this disease comes in extremely severe forms. Look around the world is not a just or fair place, even if others around us who aren't ill want to make it so. (I don't want to scare any one because many people live full lives with work, family and children with IC.) While it is admirable to take personal responsibility for ones actions, blaming not getting well from IC makes no sense. Please don't beat your self up as IC is does a good enough job, right? You didn't have a choice of how severe you IC was going to hit your body. If you did of course you would have changed the course of it. Please be easy on yourself.

Sending support,
ads

Thanks for sharing your story, Jill.

I'm glad that for the most part you are in remission, but for me, I have had this for 33 years. I can remember the pain as far back as 6 years old. After 17 years of urologists and doing everything short of suicide, nothing has worked for me. I didn't give up, Jill. I've never been a quitter type. I wish it was as easy as not giving up. I would much rather be healed than not. Last weekend I had the opportunity to be on national televsion and all I could do was sit in the far back of the studio because my pain was so bad. I had tried my very best not to quit and be healed of this chronic condition beforehand but my best was still not good despite my best efforts-- and hasn't been for the past 33 years.

Best wishes,
Susan

[Wolfe]

Kepage5, I know you're probably busy with school, but I hope you find time to log on and find this post.

Try the Elmiron with food if it's bothering your stomach. You might also try taking the powder out of the capsule and dissolving it in water. I have to take it with food or it feels like there's a little man with a pick-axe in my stomach, trying to hack his way out!

I hate to see you give up on Elmiron if it was truly helping you.

[ads]

Another tip for meds that bother ones stomach is to include plenty of water or another fluid. I have a hard time eating an ample amount of food to cover the med.

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[tiffRN83]

Thanks for your stories! I was diagnosed with IC in January this year. I started having problems in June of 2006 after I had my gall bladder removed. I'd thought it was happening because they put over 4 liters of IV fluids into my system during and after the surgery and my body was still trying to get rid of it all, but then the symptoms continued. It got to the point where I had a hard time driving anywhere farther than a 5 minute drive because the pressure from sitting down on my bladder would cause bad spasms. I didn't know what to do with myself! Being a nurse, I learned long ago to be able to hold my bladder for 8-10 hours, no problem, this going every 20-45 minutes was insane! I finally went to my internist after 4 months of it continuing with gallons of cranberry juice running thru my system and no relief. (Now I know why!!!) He told my "well, there's some protein in your urine, which concerns me, lets send you for a protein and creatinine clearance test, to make sure there was no damage done to your kidneys during the surgery from the anesthesia." Ok, fine, so when that came back normal, I was at a loss, my doc told me "well, I don't know what to tell you, your urine is completely normal." Fortunately, being a nurse, I know what my next step was to be. I talked to the ER docs I work with to figure out who was the best Uro at my hospital and ended up in Dr Garvey's office. The first meeting I had with him,(january) he told me he believed I had IC, and we would set up an appointment for the KCL test, and we would go from there. In the mean time, he started me on the Elavil to see if it helped my symptoms. Now, after 8 months on Elmiron and Elavil, I can now go 4 hours without needing a bathroom. My fiance with the bladder of steel is so relieved that we can take a road trip without much worries about where I can stop. Now I just need to figure out if I'm going every 4 hours because I know I can, or because I NEED to go...

Thanks everyone for your stories!!!

[ICNDonna]

I reposted the message from mherrerias so she will get more responses.

Donna

[leitchfieldmom]

I just found out I have IC and don't really know where to turn. I feel really depressed and happy about the diagnosis at the same time.
I am from Leitchfield ky., and have found a doctor 70 miles away in Louisville ky. My mother found him for me after I spent 6 months suffering from what I thought (as told by my urologist at the time) was a UTI. One visit he would tell me that my urine looked good and the next, you still have infection. I was soooo confused. I had never heard of IC before until I went for my first visit at the Hubbard Clinic in Louisville. I was told that my urine was fine and that I had something called IC and that many women had the condition. I cried like a baby and told the doctor thank you for explaining this condition to me as I had started to believe as others were starting to tell me that maybe it was all in my head. I had a Hydro/cystro 10 days ago and am going back for postop on Aug. 14th. I am suppose to meet at that time with a dietician and an allergist to help me with my diet. I suppose they will also start me on a medication at that time. I am just upset at myself that I can't be happy about knowing what this is and that I will get help. I am just afraid that I will never be any better. I lay in bed at night and can't sleep for spasms and pain. I am using Utira-C, but it doesn't seem to be helping very much. I have spent so much money on doctors and medication. (10 antibiotics in 6 months) and now this. I would sell everything I own if I could be well again! I think my husband of 19 years is sick of my complaining and of course not having sex doesn't help either. You give me some hope that I will be well after time. I have started the IC diet. No changes, but I am trying. Drinking lots of water until I feel I am floating.
Hope I haven't overwhelmed you. I am just glad to have found this site and to communicate with someone who understands.

Thank you,
leitchfieldmom:

[maryla]

Yes, you are right this site has been a God Send for me as well. I was d'x 4 yrs ago and found this site right away and it has been so helpful. We talk about everything here.

If you have any thing you would like to talk about in private with someone you can always (pm)private message as well.

So glad you found us!

God Bless, :pray:

[justice4j]

You are getting great care at Hubbard Clinic. I don't live near enough to go there - I'm in CA- but if I did, that is where I would be treated for IC. They are on the cutting edge of every treatment available and have a wonderful Nurse Practitioner, Melinda Staten.

Look up posts by NGazerro. She is a patient at Hubbard and is doing well. You are in great hands there. Your mom found you an excellent clinic. They will do everything possible to get you better.

Hugs,

[kristinj]

Jill, it is so encouraging to read your story even though it was written a couple of years ago. I am also 33 yrs old right now, so the same age you were when diagnosed. I have three small children and I'm finding this to be the most difficult time of my life. I am SO thankful I found this website- I don't know how I could have survived without it these past couple of weeks. I have not yet been diagnosed with IC, but am almost sure I have it. Unfortunately the urologist I have been seeing doesn't seem to know too much about it. FRUSTRATING!! I am currently looking for another one. If anyone reading this lives in the San Francisco Bay Area, specifically the East Bay, and knows of a good IC doctor, please let me know!!!!!

[kepage5]

Hey kristinj!

Im sorry to hear that you're having a hard time. Im not in California, but I have also found that most urologists around me have no idea about IC or don't "believe" in it. But have you tried looking for gynocologists that could help? Mine has literally turned my life around with treatment.
Good luck! Don't give up, it can get better.

[kristinj]

Thanks so much for the kind words. I do have an appointment to see my gyno, but can't get in until the 23rd. I am trying hard to be patient but having such a hard time. I have three small kids and this is the toughest thing I've ever been through. Taking it day by day... sometimes hour by hour. The success stories on here are the only thing getting me through. I look forward to the day I can come back and post mine. :)

[Maxeeeeene]

Dear Jill:

I was hoping you could help me with this. I have tried everything and the only thing works for me now is Percocet. It was a real godsend. I found out about it when I herniated two discs and was on Percocet for the pain. I was amazed at how my bladder was so wonderful. Anyway, for some reason my urine tested negative for Percocet two times in a row (the clinic asked for a confirmatory test and did the GC/MS test (if that's what it's called.)) Anyway, as a result, my doctor thinks I'm a drug addict and a thief and won't give me any more Percocet.

Do you have any information about negative urine screenings that I could pass on to them to defend myself? They are currently testing me out on other narcotics--but the side-effects are so much worse and they're not half as effective.

Sorry to be posting here. I couldn't figure out where else to post and I wanted to contact you directly.

Thanks.

Maxine

[samanthareiche]

Your story is amazing Jill. Glad to hear you are doing better! Any advice for a poor girl realizing she has IC. I have been in such pain the last couple days, crying all night. :confused: I've been changing my diet, and hoping that will help me out more.? Can anyone tell me any good juices out there that a person with IC can have?

Thanks-

[icwillbehealed]

I have had IC for 6 years. I am almost 32. I have been struggling badly lately. Trying to heal myself naturally for 3 years and going no where it seems. Spent thousands of dollars on Chinese medicine only to get no where. I do believe there is a bacterial component to mine because it started with an infection and strep shows, also very strong antibiotics for unrelated issues give me 100% relief for the 10 days I am on the antibiotcs. I will not go on long term antibiotics though, because I know my immune system is already weak, and I feel this would only cause more issues with other systems of my body down the road.

My issue with Diet is this: ALL food except eggs and meat make me flare, and I cannot live off eggs and meat.

I have to say I have always been too scared to try any of the treatments the doctors offer. In my heart I had believed I would be able to heal from this on my own. I have not been able to yet and the striving is driving me insane, along with the pain. So, I go to see my urologist tomorrow to finally begin Elmiron and try some other things, mainly the rescue instills.

I am very nervous as I am not sure how this could long term affect my body and my urethra. My urethra is a huge issue and I feel like sticking something up it, could be very painful.

Jill, I read your story and I am so happy you are happy. It gives me hope to know you can still have a life and fulfill your dreams even with living with this. I also have IBS and have to follow a grain free diet for this. I have many food allergies now as well, and this makes the IC diet very very restricting for me.

So, I my questions are what medications and/or treatments were MOST helpful for you or ANYONE reading this!

Thanks so much!

[Barbm]

Here is what I recommend and why. I believe that IC is caused by a weak GAG layer of the bladder that causes urine to leak through and stimulate the nerves that cause urinary frequency and pain.

1. Take the Elmiron. It is a heparin like substance that coats the bladder and acts like a lotion to the bladder. 100mg three times per day

2. Take Cystoprotek. It is an over the counter supplement that includes glucosamine, chondroitin, and hyaluronate sodium. These are the chemicals that make up the GAG layer. These substances are well absorbed into the blood stream and are well excreted in the urine. There are several research articles that talk about instilling these drugs directly into the bladder. It makes more sense to me to just take the supplement orally seeing that it gets to the bladder naturally! 2 tablets twice per day

These 2 treatments should pretty well repair the GAG lining- but be patient!

3. Take amytriptilline (Elavil). This is a nerve blocker and helps calm down the overactive bladder nerve

4. Take a histamine blocker. This includes either the histamine 1 blockers such as Vistaril, Atarax, Benadryl or the histamine 2 blockers such as ranitidine(Zantac) or cimetidine (Tagamet). Most of the IC research is on the histamine 1 blockers, but some recent research with animals showed that the histamine 2 blockers actually worked better! These are working as nerve blockers. They block degranulation of the mast cells. Mast cells are involved in the cascade that send nerve pain to the brain.

These 2 treatments should help block the pain nerves from the bladder to the brain

5.Get into pelvic physical therapy or do it yourself. Buy the books "Heal Pelvic Pain" and "Ending Female Pain"

The pelvic muscles actually tighten up in an attempt to decrease pain but the tightening actually ends up increasing the pain

6. Follow the IC diet available on this site.IC is supposedly a rare disease.In my medical practice, I see multiple women daily with some degree of bladder complaints- from mild to severe. I think this is actually a very common condition. I think our bladders were never designed to handle diet coke, coffee, spices, alcohol,etc.

[Briza]

I have had IC for 6 years. I am almost 32. I have been struggling badly lately. Trying to heal myself naturally for 3 years and going no where it seems. Spent thousands of dollars on Chinese medicine only to get no where. I do believe there is a bacterial component to mine because it started with an infection and strep shows, also very strong antibiotics for unrelated issues give me 100% relief for the 10 days I am on the antibiotcs. I will not go on long term antibiotics though, because I know my immune system is already weak, and I feel this would only cause more issues with other systems of my body down the road.

My issue with Diet is this: ALL food except eggs and meat make me flare, and I cannot live off eggs and meat.

I have to say I have always been too scared to try any of the treatments the doctors offer. In my heart I had believed I would be able to heal from this on my own. I have not been able to yet and the striving is driving me insane, along with the pain. So, I go to see my urologist tomorrow to finally begin Elmiron and try some other things, mainly the rescue instills.

I am very nervous as I am not sure how this could long term affect my body and my urethra. My urethra is a huge issue and I feel like sticking something up it, could be very painful.

Jill, I read your story and I am so happy you are happy. It gives me hope to know you can still have a life and fulfill your dreams even with living with this. I also have IBS and have to follow a grain free diet for this. I have many food allergies now as well, and this makes the IC diet very very restricting for me.

So, I my questions are what medications and/or treatments were MOST helpful for you or ANYONE reading this!

Thanks so much!

Hello
Welcome to th board:) I hope you find the support here you need!

To ensure that you get the most input, you might consider reposting your story in the Introduce Yourself forum by following this link and then clicking on "New Thread."
http://ic-network.com/forum/forumdisplay.php?f=71

Since you are interested in natural treatments, look into anti-inflammatory diets. THere is lots of info on the web about this type of diet, and it could easily be modified for IC. I'm currently following such a diet and seeing excellent results for chronic muscle pain and inflammation, and there are some others here following similar eating plans for their IC symptoms.

Good luck. Please keep us posted.

[Barbm]

In addition to my previous post, I forgot to mention- get adequate pain control! Many people believe that putting up with pain is the "right" thing to do. Pain creates MORE pain. The body, brain, and nerves get conditioned to expect pain. Think of it this way- if you want to play the piano well- you practice the piano. If you want to be in severe pain-you continue to put up with ("practice") pain. So by all means get some pain medication from your doctor!