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  • Northern Jersey?

    I'm in Rockland County, NY, but Jersey isn't far. Anyone in northern Jersey with a group or who would just like to talk?
    Thanks,
    Karen

  • #2
    im in florida now i was born in Wayne,NJ. Wished i was there =)
    Have had IC for about 4 years I didnt get a DX until march of this year. i am 21 now with two wonderful children&a great husband
    Have always had questioned Endo..
    And now....having sciatic nerve problems GGRR...

    Currently taking...

    VESICARE 5mg and 10mg
    Lortabs 7.5mg

    Had a cysto in office that showed alot of bleeding and irritation in my bladder in march 2010
    &&then in the OR Hydro plus a bladder cocktail
    And on May 24 had another cysto in office that showed the neck of my bladder was very very irritated and their was spots that my URO said possibly could turn into hunners ulcers =(

    Too many meds ive tried and failed to name...haha

    *TRYING TO FIGURE OUT LiViNG LiFE WiTH IC =/

    Comment


    • #3
      OH yeah! I've done plenty of shopping in Wayne! I always loved the Fortunoff store there. I was sad when it closed. I am a bit frustrated not to be able to find any close IC'ers to chat with. I know I can always chat on the site (and I do all the time), but I wish I could find a little local group or something. There are plenty of things in the city, but I don't know my way around down there. You would think there would be plenty of people around here with IC. I guess there are, but they just don't go to the site. We'll see if I can come up with anyone! Thanks for the reply. Have you had IC long? And how bad? Are you able to control it at all?

      Thanks
      Karen

      Comment


      • #4
        I live in Northern NJ

        HI neighbor
        I'm in River Vale. Right next to Montvale. I've lived here my whole life. i just posted my story in the introductions forum. I haven't posted much else yet.
        Nice to meet you
        My IC is under control with DIET.
        Tried Cystoprotek but gave me terrible heartburn.

        Current Strategy:
        IC Diet (most helpful)
        Quercetin 500mg
        D-Mannose (when flaring)

        Comment


        • #5
          Hi Lizzylu,

          Of course I know River Vale and Park Ridge/Montvale. I've eaten at the Park Ridge Diner many times! I often get gas at the Mobil station right exactly almost touching the railroad tracks there. You know how New Yorkers who live near the border always to Jersey for gas! Also have gone alot to this hardware store right next to the tracks. They have everything there. There's a huge nursery in the general area sort of close to the Parkway entrance there. The name escapes me right now. (Italian name) We go there all the time. I wish I knew of a group or something to go to. Nobody has ever heard of IC. They look at you like you are crazy. They see that you don't "look' sick, so they think it is no big deal. I have had it for about twelve years. I do pretty good controlling things with diet, but I have to be very strict because I am very diet sensitive. It is a bit hard knowing I have to follow this for the rest of my life. I hope a cure is found soon! Flares really ruin a day, to say the least. I do whatever I can to eat carefully to feel good. How is your IC?
          Isn't this a great site?
          Karen

          Comment


          • #6
            Yes, this is a great site. I found it pretty quickly after I realized I had IC. It gives us hope.
            Well, My IC came on Nov of last year 2009. It came on out of nowhere and hit me like a ton of bricks. It completely disrupted every part of my life. I went down lower than I ever thought I could go. I quickly started on the diet (I didn't have any appetite and I was really barely eating anything and lost a lot of weight) I immediately quit ALL sugar. All I ate was Hard boiled eggs, salad, brown rice, chicken and some other meats, water and spelt bread and some cheese. Once in a while I would have some chamomile with honey. After a couple of months the IC started getting better and better and finally it was non existant for 3 wonderful months. As I was feeling like my old self again I started having fun trying to put the weight back on so I could fit into my clothes again. Drinking milkshakes everyday, eating tons of cookies, I was bombing myself with sugary & high fat foods. I was eating like a teenager. I did gain my weight back which was good. BUT about 2 weeks ago my IC symptoms came back. So I'm thinking there must be something to this. So I decided to do what I did before and cut out (or down) sugar again. Eat mostly meat and veggies and see what happens. Today I have not had any bladder symptoms, first time in 2 weeks. So hopefully I'm on the right track again. I am not taking any meds for IC. Although I did just order Cystoprotek yesterday. Hopefully I'll be one of the lucky ones that it works for.
            What are you doing for your IC? Just diet?
            My IC is under control with DIET.
            Tried Cystoprotek but gave me terrible heartburn.

            Current Strategy:
            IC Diet (most helpful)
            Quercetin 500mg
            D-Mannose (when flaring)

            Comment


            • #7
              Lizzylu,
              I went to three urologists to confirm the diagnosis. I tried Elmiron for about a year and it didn't seem to help. The last urologist gave me a few tests and he absolutely agreed with the diagnosis. He wanted to see for himself. He suggested a hydrodistension which I had and it wasn't bad. I felt pretty good for a few months, but the IC slowly seemed to creep back. I just resigned myself that I needed to try the diet. It is hard. It doesn't take effect right away. Slowly but surely I started to feel better and better. If I am very careful, I can feel almost normal. I try to add in new foods one by one. Sometimes it works, sometimes it doesn't. That is the only thing I am doing. No meds. When I hear some of the people on the site say they go to the bathroom 50 or more times a day, I know I am truly very lucky. I am going much more than I should, but I can usually go two hours to two and a half hours. That is pretty good. If I flare, it is much worse. Normally, I get up either three of four times a night. Alot of people would kill to do that good. I have been tempted to try some meds for frequency, but I hesitate. Some drugs have side effects and cause other problems, and I haven't come to the point yet where I am willing to try. I might get there someday. My dream would be to find some sort of a weekly or monthly group to go to where we can hash out things and meet people who really know what we are going through. I have investigated this. It seems there are tons of groups in the city, but I'm not willing to travel down there. I'm hoping so hard for a cure.
              Great to talk to you.
              Karen

              Comment


              • #8
                I'm in the northern New Jersey area as well. I'm in Bayonne, which is on the Hudson across from NYC (next city down from Jersey City). I was diagnosed just under three weeks ago. I went to a specialist for another problem I was having (which turned out to be VV) and he diagnosed me with IC and other things. I have a mild case of it though, just the urgency and frequency, but even at that I don't have it nearly as bad as some I have heard and read about!

                Dx IC
                Dx VV
                Dx PFD
                Dx LS
                *All diagnosed in July 2010
                Dx Anxiety Disorder, Spring 2005

                Treatments:
                Hydroxyzine
                Nortriptyline
                Elmiron
                IC Diet
                Bladder Instillments
                Triamcinolone
                Topicort
                Bactroban
                Lidocaine
                Physical Therapy
                Mind-Body Relaxation Techniques

                "God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference."

                Comment


                • #9
                  Hi guys,

                  Just thought I would join in on the discussion since I am from North Jersey too. I live in Wyckoff and while I was officially diagnosed with the disorder in 2002 it didn't bother me (except the running joke amongst my friends that I went to the bathroom alot) until 2007 when the **** hit the roof and never, even went back to normal. Sometimes, I wish I knew of a support group or could get together with others who understood what I am going through because as much as I describe it to family and friends I know they don't understand. I guess I am lucky because I don't have any real food triggors, except maybe coffee and that's only when I drink 4 or more cups. According to Dr. Moldwin in NY, it I had a food triggor I would know. I guess the reaction to the food comes on fairly quick. For me, when I am good, I'm good and when I am bad, I am really bad and the flares appear to have no rhyme or reason

                  I know I read somewhere about a support group that is run by a doctor in Englewood NJ. If anyone is interested I can probably get the name of the doctor from my PT since she is Englewood based.

                  Comment


                  • #10
                    Support Group

                    Hi,
                    I live in Northern NJ and would love to see a support group. Have IC and PVD for about 7 yrs now I am 50ys old. Having installs right now but will have cysto and Hydro in about 2 weeks thought the installs were helping at first but still in pain. Really hard when you work full time and have to deal with this disease. Really wish they would come up with a cure.

                    Stay well

                    Jo Jo

                    Comment


                    • #11
                      Hi JoJo

                      Where do you live in Norther Jersey?? I am in Wyckoff. I understand how you feel about how difficult it is to work with this disease full time. I think the reason why it is so difficult to find something that works is because all of us have different symptoms, different triggers...etc...etc. Also it is not a very well known disorder and not enough individuals have been diagnosed with it to make it profitable enough for the large pharmacuetical companies to spend money on research. I recently went to a high risk obgyn and she out right told me since so few people have it and so little is known about it she would have no idea how to treat me while I was pregnant Please my own urologist really doesn't know that much about it. I have to go to a psychiatrist just to get valium and my husbands rhuematologist to get Savella....which by the way I have been taking now for 6-7 weeks and my pain is down to a zero!!!! Frequency/false sensation down to a 4. This is the best I have felt in 2 1/2 years:woohoo: Are the instills working for you?? I have never had one because I don't have food triggers. I think alot of my pain is myofacial and nerve based.

                      Comment


                      • #12
                        A guy from Jersey

                        Hello all, I'm a guy who was diagnosed with IC in 2004. I had numerous treatments, including the Interstim, which was a dismal failure. My IC got so bad, my bladder could hold only two ounces and was loaded with rare mast cells(not good).Eventually I went to see a big surgeon at UMDNJ and I had to have my bladder removed. It has been a nightmare since then. I am just as bad now as when I had the bladder. I still have those horrible IC symptoms, sensations of intense urgency and stabbing pain and pressure.Now I have a urostomy and a illeal conduit.I just had surgery a few days ago to repair a post incisional hernia, which is common with the kind of surgery I had previously. I am still working, but I don't know for how much longer. I am in North Jersey, Bayonne. Take care all, God Bless

                        Bruce

                        Comment


                        • #13
                          C'mon all you Jersey people
                          Originally from the REAL south Jersey, Cape May County, and there are really good urologists there. My dad had stage IV prostate and his urologist kept him going for 10 years with minimally invasive treatments. There are good docs out there, you have to shop, just lke you do at the market. Be informed, ask your questions, and never let a doctor intimidate you. Although we are far away from Jersey now, you have so many resources there, Philly, NY, etc. Be an informed consumer and stop seeing docs who don't help you. Totally understood that it is sometimes an insurance issue, but you have the right to stand up for your rights. If we all band together and have to educate the doctors ourselves, then let's do it.
                          Our uro, who thankfully diagnosed Hub, but did not believe that diet had anything to do with IC flares and pain, said how can this hit your bladder after digestion and cause problems. (Duh)
                          There are a lot of doctors out there, and nurse practioners, who are still willing to learn more than they got in med school. They are there, let's find them and help them to help us. Let's teach them to be compassionate and understand IC and if they do not, guess what? They don't get paid, because we will fire them.
                          So sorry, just venting, so tired of hearing stories of medical "professionals" who choose to dismiss IC and related issues as all in the head. I just believe that ALL consumers need to stand up for themselves and make our medical system one of the best in the world, rather than one of the worst.
                          And you people in Jersey, come on now. There must be a thousand uros down there. We're in the middle of nowhere now, and we finally got a good one. Keep shopping guys and gals, and when you find a good doc, spread the word. Please!

                          Comment


                          • #14
                            Bobo,

                            Love your post and glad you found a doctor who has helped your husband!! Unfortunately, I have been to about 12 urologist and none of them have been helpfull!! I even went to the two well know one's in NY and Philly and really nothing new. I truly think the problem is that even the so called specialist in the field of IC really don't understand it!! The one doctor outright told me this and there are so many components to it and everyone has different triggers and symptoms that there is no true way to treat everthing. Also every doctor has their own theories and beliefs about it. I for one have absolutely no food triggers and am really unsure what sets me off!! The well known doctors believe that while I do have IC (saw the bleeding with a hydro) that is really not what's bothering me the most. Maybe the IC is affecting me 20% but the PFD/high tone/trigger points are what is keeping me in a chronic cycle of pain and bladder pressure/sensation....And I have tried all the conventional and non conventional treatments for it. I have even beeen in PT for two straight years!! Lately, I have found the most relief from a drug for fibromyalgia called Savella....but again NO doctor recommended it to me or brought it to my attention I did the research and requested it. Two of my urologist refused to give it to me, so I went to my husband's rhematologist and he finally prescribed it for me. Now I am for the most part pain free....Uhhhh!! However, pressure and false sensation still sneak in alot and if I even attempt to work out I go right back into pain

                            Comment


                            • #15
                              I am originally from Bayonne. I was in remission for 12 years and then this past July IC returned. What high school did you go to?

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