No announcement yet.

An IC Action Plan

This is a sticky topic.
  • Filter
  • Time
  • Show
Clear All
new posts

  • An IC Action Plan

    Alot of patients ask me... how do I cope with IC? Why am I so optimistic about the future?? Honestly, I spend so much time with researchers, doctors and patients, I see the success stories each and every day.

    The foundation, in my opinion, is viewing IC as injury. If you've had a bladder distention, your doctor probably saw those small petechial hemorrhages (aka glomerulations) which are, in essence, wounds. Or, you might have the larger wounds which are called Hunner's Ulcers. We're not sure exactly how these happen but, in surveying patients, we believe that a number of events might trigger this irritation, such as:
    - it can be damage from a single UTI,
    - it can come from a fall or car accident,
    - it can be a chemical exposure (such as chlorine),
    - patients going through chemotherapy often struggle with bladder irritation.. thus it can come from another medication
    - after an aggressive labor & childbirth

    I think for many patients, it can also begin because of a diet so high in junk foods (coffees, sodas, etc.) that the bladder just can't tolerate the chemical load. Think about it. The mammalian bladder is designed to be the toughest cell membrane in the body so that it can store toxins until they can be voided out through urination. But, it was never designed to hold excessive levels of acid that we would see in patients that drink massive amounts of sodas or coffees. God forbid they only drink beverages and never drink water. Can you just imagine just how concentrated and junky their urine is? Uggh! I believe very strongly that a number of patients, through a poor diet, have traumatized their bladders to the point of irritation.

    Dr. Theoharides, in his latest lecture on our site, also made a case for IC being the result of another internal issue, such as endometriosis or IBS. You can find more on that in his lecture at:

    But, regardless of how those injuries occurred... and please don't exhaust yourself trying to figure it out unless you know you were a junk food junkie.... I believe that the secret to living with IC is looking at this as a simple injury. The bladder is wounded. It's irritated and, as with all wounds, needs to be protected, soothed and given time to recover. I liken it to a skinned knee... with lots of little tiny wounds.

    Your job is to soothe the bladder, to not irritate it further and to use medications, if needed, to help control inflammation and irritation. Here's the basic plan:

    (1) Don't hurt your bladder further through diet: If you poured acid on a wound every day, it wouldn't heal, right? So, even if you feel okay when you have that cup of coffee, you have to ask yourself... would I pour coffee on a wound?? If the answer is no, don't do it. I think that it's important to avoid those top five forbidden foods for atleast three months or longer. You can read our diet list in the ICN Patient Handbook, link at the top of this page.

    (2) Consider the concept of a bandaid or a coating to cover up those wounds and give them a chance to settle down: The most common coating is, of course, Elmiron but the flaw with elmiron taken orally is that most of it is destroyed by digestion before it reaches the bladder. This is why patients have to take so much for so long to see some benefit. But, there's a new innovative bandaid worth considering... that's called a rescue instillation. Basically, it uses elmiron (or heparin), a local anesthetic and some sodium bicarb to numb the bladder and help restore the bladder lining. C. Lowell Parsons (UCSD) reports a 90% success rate with this technique and has even taught children how to do it at home. You can read about rescue instillations in our patient handbook as well... or you can hear Dr. Parsons talk about it in the DVD from the San Diego IC & Pelvic Pain Conference ($22.50 at

    (3) Reduce inflammation: Okay... so the bandaid sits on the surface but it doesn't get down into those red, sore tissues where inflammation is running rampant. Inflammation is something like a vicious circle. Mast cells release histimine (which creates the red, painful swelling in allergic reactions and mosquito bites). Histamines irritate the nerves which then release Substance P. Substance P then cause the mast cells to release more histamine. Vicious ugly circle. So, our goal is to break that cycle... perhaps using an anthistamine (hydroxyzine aka Atarax or Vistaril) and/or a low dose antidepressant. Quercetin, a bioflavinoid commonly found in OTC supplements such as CystaQ, ProstaQ, Cystoprotek, BladderQ, has anti-inflammatory processes as well. These are available in the ICN Shop!

    (4) Treat pain promptly: Pain is like a fire .... the longer you let it go, the bigger it gets and the harder it is to stop. Thus, it's important to catch pain early. I can stop a flare in an hour because I know exactly what my early warning sign is (a searing pain that goes up my belly). If I have that pain for more than 30 minutes, I act quickly. I stop what I'm doing, slap on a heating pad and try to get those muscles to chill out. If, 30 minutes later, that hasn't helped, I'm going to use a very small amount of pain medication to nip it in the bud. Most of the time, that stops it in its tracks, life goes on and I don't need any more pain meds. The secret is not waiting until your in agony before you doing something about it because then you've let the pain cycle get fully activated and it will be much harder stop and require more medication to treat.

    (5) Listen to your muscles: Your bodies natural reaction to pain is to tighten muscles to protect you. This is why so many patients struggle with pelvic floor dysfunction, or muscles so tight that it's actually hard to relax enough to begin urination. Many urology clinics now offer pelvic floor assessments and therapy for their pelvic pain/ic/painful bladder patients. If you notice that it's hard for you to start your urine stream, consider asking for a pelvic floor assessment.

    (6) Embark in a program of daily relaxation: Your tension and stress level will directly impact the pain and discomfort you are experiencing. Tight muscles burn and can be very painful. Certainly, we all have experienced pain as a result of stress as well. All good pain management programs focus around a daily guided relaxation that you can do at home. I didn't believe that it would work for me. I thought it was psychomumbo jumbo. But, I was desperate and willing to try anything. The first week, I fought doing a 15 minute guided relaxation each day... but I did it. By the second week, I was looking forward to it. I was amazed at how much better I felt when I took the time to relax my body. We sell several excellent CD's that you can use at home in our shop! I use them too!

    (7) Break the isolation: This is probably the hardest thing about IC. After all, do you really want to go anywhere when you know you're going to have to pee every 15 minutes. But, isolation breeds depression. Depression breeds despair.

    You are not your IC. IC doesn't change your head, your heart, your brain, your intelligence, your soul. You have nothing to be ashamed of. You are hurt... just as someone who might have been in a car accident. So, each day, you have to break your isolation. Go take a walk, call a friend, call your IC buddies. If you're feeling more chipper, go shopping or take in a movie (even if you get up three or four times). You deserve that movie!

    Yes, you're hurting right now but you can still accomplish things. Whether it's crafting, working at home, writing ... use this time constructively! One great way to use that pain is to pour it out in a letter to your Senator, Congressmen, local paper or TV show... and ask for IC awareness! Tell your story and let's see if you can help others too!!!!

    In reading the above, I realize that it sounds simplistic. I've written this more for the newly diagnosed patient who has mild to moderate symptoms. Patients with Hunner's Ulcers or advanced IC may need to use other more aggressive therapies as well. But, the diet, relaxation, muscle suggestions are sound for those too!

    Most of my optimism is because I see the research and it's exciting. Each month, we learn more about the bladder, about IC, about pain care.... and are coming closer to that cure. We are rich with resources for patients with IC in 2006 compared to patients who were diagnosed just ten years ago. So, use them! Educate yourself about your options! Speak out for yourself! Give yourself permission to ask for help if you need it. Perhaps the biggest part of facing IC is acting for yourself when you feel so badly. But, you can do it! If I started a support group from my bed... you can make a few phone calls to set up doctors appointments, find a support group or whatever from your bed too.

    One of my favorite mottos is: Ask! Action! Satisfaction. You can't get satisfaction until you take action. But you can't take action until you ask a question. So, if you're not happy with where you are with your IC, call your doctor and ask for an appointment. Then go to that appointment and work out an action plan. With luck, determination and consistency, you will move forward! Just do it!

    :::from my desk and office in the heart of the California Wine Country where, sadly, they still don't have a low acid wine::::

    Last edited by icnmgrjill; 02-01-2006, 09:31 AM.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.

  • #2
    Thank you Jill!! It is great!! Thank you for everything!
    I wish you the best!


    • #3
      Thank you Jill.


      • #4
        What a great post! Thank you Jill!

        Dream with the feathers of angels stuffed beneath your head - Clutch

        IC, PFD, IBS, Fibromyalgia, MPS, Migraines, Allergies, Scoliosis, Bi-polar, Vulvodynia......


        • #5
          Thanks Jill
          Faith, Hope, and Love,

          I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          or find me on facebook
          Be the Miracle! & Pay it Forward!

          [email protected] please contact me...I am here to help!


          • #6
            What an inspiring post! Thanks!

            And I hear ya on the vino....I have 5 bottles of chardonnay that I can't drink!
            1/19/2006 diagnosed with PBS/possible IC
            2/1/2006 Elmiron & Elavil 50mg
            3/2006 began PN symptoms
            7/18/2006 broth culture sent (found Strep D) stopped Elmiron & Elavil and began long-term amoxicillin - IC symptoms relieved at last!
            09/29/2006 PNMLT found pudendal nerve damage on rt side (nerve block to be done Oct 4)
            10/20/2006 - lyrica for PN pain (didn't last)
            11/20/2006 - cymbalta for PN (didn't last)
            12/2006 - stopped all meds and started Dr. Moldwin's therapy of valium and PT for PFD, which is still working for me
            UPDATE 7/1/2008 - weaning off the valium...taking 2mg nightly about 5 days a week, so doing great. No more pudendal nerve pain, although I'm careful about how I sit at work and try to exercise to stay relaxed to minimize PFD. A powerplate workout machine helps massage those inner PF muscles, and I take MSM and glucosamine (in MonaVie) religiously, which are both natural antiinflammatories. I feel GREAT!
            UPDATE 2/16/2010 - completely pain free!

            Looks like the "IC" pain caused my PFD, which pinched and damaged my pudendal nerve, which in turn sends out misguided signals to my PF muscles....battling this pain cycle, but at least I have been pain-free bladder-wise for 2 years now!

            JMHO - I don't believe that antibiotic therapy should be considered controversial....the theory that "IC" is a disease should be controversial. I believe that we all must find out what causes the damage to our bladder linings, stop that, and then let it heal. In only 9 short months, I added EVERYTHING back to my diet and have been "IC"-free for 2 years and counting.


            • #7
              Thank you Jill. It was this advise when I first spoke with you that helped me heal.

              You rock!
              Minds are like parachutes-they ony function when they are open.
              -Thomas DeWar-

              ICN Newbie Volunteer

              *ICN Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


              • #8
                I need that today!

                Hugs and Wishes for Pain FREE days!!,

       ~reducing plastic waste one bag at a time~

                Facebook: Kara Kaiser
                Twitter: Love4Earth

                Me and my Guccigirl... she helps me through those painful hours!


                • #9
                  Well said Jill!!! Given I've tried the prescription route & it's not for me however I truly know that I ate lousy & lots of junk food & pop until I was forced by my IC & other medical conditions to change what I was doing for good. I was in denial for a long time, I didn't wanna go anywhere or discuss things with others. Then I asked myself one day, do I really want this to take over my life or do I want to do something about it??? I then accepted teh fact that I had IC & it wasn't going away...weaned myself off of my beloved caffeine free pepsi & loads of chocolate that I had been eating. Guess what? I sure started feeling better & wasn't having the urgency to pee nearly as much, what a concept!!! It's kind of like owning a car, you gotta give it gas & oil & regular maintenance in order to gotta take care of your self in order to continue living right? I then decided to write every newspaper, magazine & television station & could get an address for. I didn't hear back from most but I did make the effort to get the word out about IC, now a days, more & more people actually know about it which I feel is a huge accomplishment!!! Last night I did a fundraiser thing, they had this really good looking punch, unfortunately it had too many different juices in it for me to drink it, people looked @ me when I said I have Interstitial Cystitis my bladder will not like me if I drink this but that is okay I can live with it...they were stunned!!! Most people won't address if they have a condition or disease, MAKE IT KNOWN!!!!! Stand up for yourself because if you don't no one else will #1, #2 people are more likely to walk all over you!!! You never know who else may have what you have or know of someone who does until you speak up about it!!! If people are ignorent then ignore THEM, they're the ones with the problem not you!!!

                  Anyway I think I've gone on enough of a "tangent", LOL!! I am very passionate about helping others
                  [FONT="Comic Sans MS"]
                  Medically diagnosed Post Menopause 9-13, unsure for how long! Have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS, seasonal sinusitis, depression, anxiety, infertility, hormone imbalance.

                  Please read Screaming to be heard by Dr. Elizabeth Vliet. I do deep cleansing breathing & relaxation morning & night along with doing Yoga everynight now, it's been a huge blessing for my body! Born & raised in Michigan, relocated to Oklahoma in 9/09. Please Don't stop anti depressants or mood stabilizers "cold turkey"!


                  Jen Meier Cascaddan on Facebook

                  Married for 21 years, have 2 cats that are my "boys"


                  • #10
                    Yes Thank You For Your Insite! It Felt Great To Read. I Like The One About Going Somehwere, And Trying To Do Something. I Feel I Am On The Verge Of Depression. Which I Thought I Would Never Hear Myslef Say. But That Is How I Feel. I Will Tell You It Does Gives Everyone Hope. I Have Had A Bad Couple Of Days I Had Hydro, Andcysto, And Biopsy Done For The Second Time Last Week And Now Have Infection. I Should Say I Have Had A Bad Couple Of Months. Thank You.

                    Here is current list of meds.
                    detrol la 4 mg
                    antihistamine (bedtime)
                    amitriptylin (bedtime)
                    estrace (bedtime)
                    testosterone (bedtime)
                    Prilosec for IBS and other somach problems
                    Macrobid 1xday
                    Phenazopyrid 2xday
                    Hyoscyamine(when needed)
                    Prelief (when needed)
                    Tramadol or Others
                    Two hydros/cystos/biopsy
                    DMSO treaments
                    DX- IBS March 2001
                    DX- IC March 2005
                    DX-Vuvidynia FEB 2006
                    DX-Pelvic Floor disfunction 2006


                    • #11
                      You are the best! We all owe you so much for all you have done and are continuing to do. THANKS!!!
                      In Search Of Normal
                      IC (Feb 2001):

                      OxyContin (started 9/06) (dosage still being determined, but working up to 3 tablets (10 mg) twice per day, for a total of 6)
                      Effexor (150 mg/day; I was at 200 mg per day but backed off due to side effects; this has helped reduce pain a little but enough to improve my life)
                      Robaxin (muscle relaxant, started 2/24/06; only as needed rarely for when muscles get tight due to pain)
                      Elmiron (300 mg/day)

                      Ulcerative colitis (Dec 2002, mild):
                      Asacol (6/day)
                      Senna Plus for constipation

                      Prozac (40 mg day)

                      Previously tried but didn't work:
                      Elavil (worked well for pain but could not take urinary retention side effect)
                      Pamelor (same as Elavil)
                      Flomax (took when I was on Pamelor)
                      Tylenol 3 (has codeine; I changed to Vicodin which worked better and did not cause constipation)


                      • #12
                        Thanks so much. That was great. We are all blessed to have so much information and insight here at our fingertips. Thanks to all of you ICNers!


                        • #13
                          Thank you, Jill.


                          • #14
                            I thank you too for this message, and for ALL you do for all of us Jill.
                            This place (ICN forum) is the absolute BEST place!!
                            Love you all,


                            • #15
                              Wow what a great post Jill. It sure was a pleasure to take in that information.


                              20 years of IC