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  • #91
    jen

    how are you in remission.

    Carolyn

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    • #92
      Hi Mommawalker, I am so sorry you are having such a hard time. I remember when I fisrst got sick and I felt terrified every moment of every day. If you want to talk here is my email address....you can write down all your questions and I will answer them and see if we can't get you feeling a little better about your situation. [email protected]

      Comment


      • #93
        Thank you so much Kim. I have alot of questions and as soon as I can, I will be emailing you It is so nice to feel like I am not alone and someone can tell me if what I am thinking and wanting is normal if I just need to tuffen up. I need alot of advice on talking to my doctor. He just scares me!!

        Comment


        • #94
          Thanks from New Zealand

          Hi Jill and thanks for this info. I'm going to give this website to my Gynae/Uro and tell him about the Emiron instills. At present it isn't available in this form in New Zealand, only through tablets!!

          I know you have Sjogrens as well, like I do so it's like a double whammy, although the two can go together.

          Thank you for coping and giving me the strength to cope as well xx

          Lesley(NZ)

          Comment


          • #95
            I thought IC was forever?? Do u simply mean your IC syptom free?

            Comment


            • #96
              In my experience & research I do not believe IC is forever however you have to find out what is causing yours to begin with & that is the hard part.

              Doctors will dispute this because there is no $ to be made if we're healthy & there isn't anything to treat, this is my opinion & I'm not saying don't trust doctors, I'm saying you gotta educate yourself!

              If you PM me with your e-mail addy I'll send you my IC story. I have a hormone balance that I suspected @ 18 years old, & it took me many years to figure out where my imbalance was. Every female on my mom's side has had issues of some kind & I kept telling doctors that, they test my hormones & since I was "in range" I was ok, bologna! I KNEW I wasn't! Their "range" doesn't apply to over 90% of us.

              I worked in a Compounding Pharmacy for nearly 2 & 1/2 years & learned even more.

              I've read alot of books too, they're in the Word document I created!

              The one I recommend the most is the one in my signature: Screaming to be heard by Dr. Elizabeth Vliet.

              Feel free to PM me with questions I can text unlimited on my cell
              Last edited by jen48446; 06-15-2010, 09:29 AM. Reason: corrected typo
              [FONT="Comic Sans MS"]
              Jen
              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"!

              http://www.icawareness.com/stories.html

              Jen Meier Cascaddan on Facebook

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

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              • #97
                You are an angel Jill!!

                Thank you so much for the encouraging words. They mean so much to all of us. I am so grateful to God and to you for making this forum for support. I found you on you tube when I first was hit with ic. You were a life saver you helped me understand what was going on with my bladder. I still do not know fully what caused my ic but I at least have ideas now of how to get it under control and help me get out of pain and able to do my daily activities in life. You and everyone on this forum will always have a special place in my heart. Also thank you for the you tube lecture of Dr. Parson's. I watch it over and over making sure I understood everything the second and third time around. Thank you again and God bless you and your family.

                Comment


                • #98
                  pain in belly

                  Originally posted by icnmgrjill View Post
                  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: http://www.ic-network.com/guestlectures/

                  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 www.icnshop.com)

                  (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::::

                  Jill
                  Hi, I found this interesting, I have not been diagnosed with ICC, but my doctor (an internalist) recommended me to see a urologist. Who really didn't help much. He wanted to do a bunch of tests, but my financial situation couldn't afford it. So he suggested the IC diet, which the information he gave was nothing compared to the Information I have found from you guys and the IC Assoc. So I have been pretty much treating this with the help of you people.
                  I am taking phenazopyridine 3 times a day and prelief 3 times a day on a regular basis. Is this a good start ?? and also using Vagi-gard lotion, as sometimes it feels like it is on the outside and not the inside. This belly pain, you were speaking of, this is the first time Ihae heard this mentioned. Does it feel like a burning feeling going down your stomach ?? Ihave experienced this feeling several times since all of this started,a nd just thought it was a side effect of one of the medications.
                  I also, found it very interesting that you can get your flares stopped in about an hour, it seems like mine vary from 1/2 day to all day.
                  One other thing, I have that during the week at work I have been getting along pretty good. and then on the weekends all hell breaks loose. And I couldn't pin point it.
                  this weekend same thing, then I realized that during the week I am drinking Aquafina and during the weekend I was drinking Nestles Pure Life. is there something about Calcium Chloride, sodium biocarbonite, adn magnesium sulfate ??? I couldn't find them in any of materials. I also bought the book by Dr. Moldwin. Haven't got all the way thru it, but working on it.
                  I have found unfornately the vibrator used on a realular basis does seem to help, not wild about it, but it seems to relive alot of pain. This is such a physcotic disease. I do have Fibromyalgia, Lupus, and asthma and allergies, so now I am blessed with this.
                  I have pulled all fruits and cranberry juice from my diet, so what is your thought, am I headed the right direction ???
                  Thanks Sorry got carried away, PS is 25% of B6 too much in the daily diet, I noticed the blueberry breakfast bar i bought to try has 25% of daily value of B6 ?? So haven't tried it yet .
                  Thanks very much, and I keep a daily log of everything I eat and medications, trying to elimnate everything.
                  I do still drink beer in the evening, as it helps my digestive tract work well, if you know what I mean. With 2 prelief, it doesn't seem to bother me, actually gets some relief as I have a bowel movement. So this physco disease seems to contradict itself alot. What do you think ??
                  Thanks So Much, it is nice to have someone to talk to about all of this stuff. Your friends just don't get it, some almost run and some I haven't told, They see you on the outside looking fine and your insides are feeling like sandpaper and needles. It does get depressing, but God knows I have put up with alot of that in my life, so it is just one more thing to live with. God blessings to you, Cindy Cederburg

                  Comment


                  • #99
                    Nice post!

                    Comment


                    • i agree with you jen about not stopping antidepressants cold turkey... i learned that the hard way. i did it once and never again i was an emotional mess
                      Last edited by flowerangela; 02-07-2011, 04:48 PM. Reason: needed to be specific
                      Newly IC diagnosed as of February 2011.

                      Medications I'm on that seem to work:
                      Zoloft- one once a day
                      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                      Failed Meds:
                      Elmiron-after 4 months,digestive side effects got to be too much
                      tramadol-allergic
                      DMSO treatments(5-6)
                      probiotics

                      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                      AROMATHERAPY-candles,incense
                      Village Naturals Aches and Pains Peppermint Bath Salts
                      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                      ACUPUNCTURE/HERBS
                      Significant pain relief so far.

                      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                      Add me on facebook Angela Hasic

                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      Lord, make me an instrument of your peace;
                      where there is hatred, let me sow love;
                      when there is injury, pardon;
                      where there is doubt, faith;
                      where there is despair, hope;
                      where there is darkness, light;
                      and where there is sadness, joy.
                      Grant that I may not so much seek
                      to be consoled as to console;
                      to be understood, as to understand,
                      to be loved as to love;
                      for it is in giving that we receive,
                      it is in pardoning that we are pardoned,
                      and it is in dying [to ourselves] that we are born to eternal life.

                      Comment


                      • What inspiring advice. Thank you ! I was diagnosed last week and it is easy to feel very overwhelmed with the label 'chronic incurable disease' as well as adjusting to the strict IC Diet. Your label of 'injury' in regards to IC is much easier to stomach !
                        Am I right in thinking that people DO go into remission?
                        That the disease or injury, does heal?
                        Many thanks.

                        Comment


                        • Thank you so much for posting this. I really do hope that a cure does come about. I believe that we will have this due to the fact that I know you wouldn't tell us this if you personally did think it was a possibility. I have to admit that the waiting and hoping for the scientists to finally find something does make me impatient. Thank you for your insight and sharing hope and love.

                          Tamara

                          Comment


                          • An Action Plan

                            Thank you very much for the information. It is very informative and very important ! I had heard great things about Dr Parsons in San Diego. I have tried twice to get a referral to him, however my insurance said a definite "no". So I am trying other avenue's, just hoping to find just the right combination of things.

                            Currently on:
                            Elmiron BID
                            Elavil 25mg HS
                            Klonopin 10mg HS
                            Baking Soda PRN
                            Prelief PRN

                            Thanks !
                            Belle
                            Readers Digest Version of my Urinary History:Urinary Tract Infections since age 19
                            VCG x 2
                            IVP x 1
                            Ultrasound of kidneys x 3 (currently have kidney stone)
                            Dilation of Uretha x 2
                            Diagnosed with IC 2008 age 48
                            Cystoscopy with Overdistension of Bladder x 4
                            2008, 2009, 2010 and 2011
                            First Overdistension of Bladder had great results, last one I had pain >10 for 30 days
                            ...............................................................
                            Current Medications
                            Elmiron, Elavil, Lyrica, Klonopin, Tagamet,
                            Macrobid (PRN) for infections, Glucosamine with Chondroitin, Fish Oil, Calcium with D, Acidophillus,
                            Baking soda 1 tsp w/water PRN, Prelief, Estrace Cream, Combipatch, Fiber tabs, Diastat (for flares)
                            .................................................................
                            Did Not Work for Me
                            Detrol, Vesicare, Toviaz, Goldenseal, D-Mannose, Quercitin

                            Comment


                            • Hey, There is a man in the small town I live by and he tells me that his IC started after a blow (hard hit) to his abdomen/ bladder area.

                              I believe that a trama to my bladder at a very young age gave me IC.

                              Weather it be a medicine an accident or some other incident I do believe trama of some kind causes IC.

                              My SMALL bladder is about 75% hunners ulcers.

                              I also believe that IC has something to with damaged nerves.

                              I also believe FMS comes from damage to the spine and nerves.

                              Comment


                              • Hi,

                                I am newly diagnosed with ic in January, 2012. I have changed my diet drastically to the IC diet which has helped tremendously. I have been having DMSO treatments. The doctor has only been using 1/2 the solution and it has been working well. I am afraid of bladder muscle damage so I am talking to the doctor about using another type of treatment for the ic possibly Heparin. Not sure which one will work better for me but I think the Heparin might be safer from what I am reading.

                                I have two children and it is difficult to manage the ic with everything. I still have not gone out of the house yet except for the weekly doctor's appointment for my treatment. I am afraid if I switch to the Heparin treatments I will not see improvement like with the DMSO. Maybe someone can give me some insight into some of this.

                                Comment

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