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  • Just found out..

    Hi,

    My name is Nina. I am 37 years old and a mother of three boys ages 14,16,18. I just found out I had IC. They did a hydro on me and confirmed what they thought. I guess I should be glad they finally figured it out. Last year I went though alot. I had my gallbladder taken out, my ovaries removed, and a mass taken out that grew where my ovaries were. I keep hope that after each operation I would feel better, but that never happened. Finally after my doctor got tired of trying to figure out what was wrong with me, he sent me to a specialist. I have to go back on the 12th of March and find out how we are going to handle this. I am trying to quit smoking because I know that is really bad for it. I am not a heavy smoker but I do like to smoke. It is going to be hard to quit. I like to jog & walk but I seem to get worse afterwards. Does anyone have problems with exercise? The diet seems to be overwheming also. I love spicy foods. Any information I would to hear.
    Thanks
    Meds on now:

    dextro 10mg

    5000mg Vitamin D- when tested, I was sooo low.
    Compound Hormones- Had hysterectomy when 24, ovaries out 37

    At night:


    4mg Zanaflex- Fibro & PFD
    plendil- Raynalds

    I have Fibro, IC, IBS, PFD, Raynauds.

    Tried:

    Past Meds
    Lexpro- changed to Cymbalta for better pain relief –off both
    Ultram – three times a day. Helped , I was tired of always being so tired.
    Elmiron-took for a year-
    Topamax-Did not need anymore since on dextro.
    Atarax- did not need anymore

    Pictures: Hubby & Me, Ozzy, My three Sons!!
    What a proud Mother I am!!



    .

  • #2
    Nina,

    I`m sorry things are so tough for you right now. I just had my gallbladder out 3 weeks ago. At least the gallbladder symptoms are gone. The stabbing pain between my shoulder blades was the worst. Have you seen any improvement. How long ago did you have surgery? Maybe things will get better with a little more time.

    Yes, exercise does seem to make the IC worse. I think we have to do something really mild like walking. Then I am ok. THere`s no way I could do an ything strenuous. Its such a balancing act with this disease, it gets very difficult.

    Sending up thoughts and prayers for you today. I hope you get some relief soon.

    Sandy

    Comment


    • #3
      HI and ..This site offers a ton of support and info on IC.

      IC can seem overwhelming I know. And its hard finding out you have some type of disease that as of right now has no cure....But if you find the right combo of meds or treatments you can live a somewhat normal life. Remember with this web site there are many IC'ers that have find the right treatment plan for them and they dont post on here as often anymore. Like you I several different types of surg. that I thought would help me, before I got my diagnose. In fact I had a hystrectomy thinking that this is what was wrong with me. But it was not. And in the beg when I found out I had IC I was mad, I felt like the disease caused me to lose a body part that I did not have to lose. Also stopping smoking is a step in the right direction. Which I know is hard to. In fact it took me a while to quit. Even with doctors telling me if I did not stop I would end up with emphsy. by the time I was 40, I am now 35. Even them telling me this I did not stop. What I did was get down to where I would only smoke a few a day, then down to 1 a day and I was finally able to put them down and I have not had one in 5 yrs. Not only is good for the bladder but also good for other parts of your body.

      As far as the diet goes I know it seems like alot. But it is only somethting to use as a guide. IC varies from person to person, this is why there are so many different treatment option and not one that will work for everyone. The diet is the same way. Sometimes I can eat something that is on the diet and it does not bother me, but it bothers other IC'ers. What I would do is elim. all on the list the try one banned food at a time and see if it bothers you or not. ALso there is a over the counter med you can get and take with food that you are not suppose to eat, it is called Prelief. You can use this when you eat something you should not have.

      Exercise does bother some people and it can interfer with their IC. But maybe once you find the right treatment plan you might be able to exercise again.

      Good luck on your return doctors appt.
      God grant me the serinity to withstand the days ahead!!!

      My myspace link...
      www.myspace.com/patricia_luvs_matt


      Patricia

      In Memory of My Father (Lawerence) 1/25/2007

      Procedures:
      Interstim Sept 2001
      1st InterStim Removal May 2005
      2nd Interstim Implanted May 2005
      2nd InterStim Removed March 2007
      Hysterectomy 1999
      Tubes Tied 1997
      C-Section 1996


      Me and my kids


      Taylor (my daughter) Me and my daughter My son Cody and Taylor

      Comment


      • #4
        So glad you found us.
        Kim

        Diagnosed August 2001

        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

        *****************************

        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

        Comment


        • #5
          Thank you for your welcome. I go to the doctor monday to see how he is going to treat me. Still have not felt great from the Hydro almost two weeks ago. Still trying to quit smoking. I have cut down to about 4 to 5 a day.. Thanks again for the welcome.

          sandyz,

          I felt better after I had my gallbladder out because it did stop those pains in my chest. I did end up with another problem though. They call it the dumping syndrome. I had to go to the bathroom every time I ate. I had my gallbladder out in july 06, and it is finally starting to get better.
          Meds on now:

          dextro 10mg

          5000mg Vitamin D- when tested, I was sooo low.
          Compound Hormones- Had hysterectomy when 24, ovaries out 37

          At night:


          4mg Zanaflex- Fibro & PFD
          plendil- Raynalds

          I have Fibro, IC, IBS, PFD, Raynauds.

          Tried:

          Past Meds
          Lexpro- changed to Cymbalta for better pain relief –off both
          Ultram – three times a day. Helped , I was tired of always being so tired.
          Elmiron-took for a year-
          Topamax-Did not need anymore since on dextro.
          Atarax- did not need anymore

          Pictures: Hubby & Me, Ozzy, My three Sons!!
          What a proud Mother I am!!



          .

          Comment


          • #6
            to the IC Network. You'll want to read the information in the Patient Handbook at http://www.ic-network.com/handbook --- you'll find the diet there, as well as other information on IC.

            I think it's great that you are quitting smoking. I know it's not easy (I quit a 2-pack-a-day habit 22 years ago), but it's so worth it.

            Sending healing thoughts,
            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              HI Nina;
              Well Welcome to the forum, glad you found us. Its been a great place for me since i found out last year i have IC along with a long list of other conditions like you. When your feeling down or need any advice please remeber this site, everyopne here is so helpful. And wyhen you have good news also let us know it give us hope also.
              I am like you I have a lotof problems exercising. If i over walk it can set me in a major flare up. My regular doctor just doesnt undersztand that and tends to be a little rude to me when i try to tell her i want to loose weight,and she asks me if i exericse and i say no cos i t causes me alot of pain. She doesnt understant it. But hopefuly you get a great uroligist who will. My Uroligist she understand what can set you into a "flare up".
              Hopefuly things will become better for you. And since you now know it is IC it may explain some of the pains, and you can better treat it. I had gone 10 years with out knowing i had it. And Once i finnaly recived the right medication, and stoped taking the wrong medicant, of course it made a big differance, I really hope it will be the same for you. I am sure the rest have mentioned the types of medication you will be placed on it all seems to be a comon set of meds that work, but dont worry if some do not. ANd also some do take a while 4-6 to take hold, That one will be the Elmiron, this helps to regrow the bladder lining. For me it took more then 8 month is will say before it really took hold.
              And another medication which is over the counter, Is called Prelive, I found it only in 2 stores where i live, at Walgreens, and Riteaid. Its cost about 10$ for a small bottle. But since you love spicy foods, this will help to nutralize the acid in the urine.My doctore told me to take it, seems to work well.I eat a lot of Indian food. And it helps.
              Ohh another thing i learned from trial and error, when it comes to exercising,dont strain your lower abdomial muscels!!!! I learn it the hard way. Some days itsok, I try to get into a rutine. but after a few days it kicks it into a major flare up leavingme in pain for weeks.
              By any chance did you find how much of your bladder is effected? I know mine is only 5-10%. Which I cant even imagin haveing more, I feel for the people who suffer with it. IF your is lower also, ask your uroligist, not family doctor, about an exercise which she would approve for you. Hopefuly you can find somthing.
              My doctor wanted me to go to physical tharapy for IC. But the only place which have it will not except my insurance. But she tells me it helps relax the muscels. This also plays a big effect on your life. She told me do the opposiut of the kegel exercises, instead of squeezing in your muscles, push our words , like when you go to the bathroom, you kind of squeeze these muscel groops these muscels you needs to relax. The more relaxed, the better. Sometimes we just dont notice we are tightening these muscels and we needs to really practice relaxing,
              I am taking some muscle relaxers Flerxerel and Eliviavil-150mg. Which i started at 25mg. some women need even higher my docter said just to relax the pelvic muscels, it plays a major role. But i am sure since you been threw so much yourself you know all this.
              Also i wasnted to say that if at time when you have some flare up, and your doctor try some things and they do not work, just dont worry and dont give up. I been in that situation, well i am in that situation. The traditional treatments for IC dont work for me. I have the initial surgery to get the diagnosis, then a few months latter i was in a major flare up. They did the office treatments distaltions with a cathider they incerted medican in and left in for 35-45 mins then you pee it out, well they wanted for 6 weeks in row. But after 4 weeks there was no improvement acculy made it worse. Then i came back a week latter to see how it was doing and the pain was gone once they stoped. Which still now i dont respond to typical medicans and ditalations.
              Just from what you mentioned seems you may feel the same thing. Typical things not working as you feel they should be. So i can compleatly relate to you. I also have Endometriosis, and was told for 10 years i had it, Then i had switiched doctors, had a laporoscopy done, she said no you do not have it. So then she sent me to the uroligist. Then found the IC. Then this past Nov, again the doc say to be i think you do have Endo, and i just missed it. Then on top of it, I found i have last summer, I have B12 dificency, Iron Dificiancy, IBS, hypoThyroidism, funcional abdominal pain.And today I found I have Low Blood Sugar.lol I was great another thing to add to teh list.
              I bet your feeling the same, You been threw so so much worse then I have my heart really feels for you. I am glad you have the diagnosis at least you have it asnwered to where the pains are coming from. IF you ever need to let it out feel free to write. You can get a lot of info from all of us here,
              take good care and try not to worry to much.
              stacy


              Current Conditions:
              Endometriosis,1995
              IC,Feb 06
              IBS-C

              Prenecious Anemia
              Stomach Ulcers
              Duodenitis
              Acid Reflux
              Low Blood Sugar
              Hypothyroid
              Migrains

              Surgeries
              Laporoscopy-1995
              Gaul Bladder-1996
              Laporoscopy-2005
              colonoscopy2005
              cysto/hydro-2006
              cysto/hydro-2007

              endoscope-2007

              Meds:
              Elmiron,100mg 2am 2pm
              Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
              Elavil, 150 1pm
              Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
              Prilosec,20mg 1am 1pm
              Zoloft,100mg 1 pm
              Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
              Reglan, 10mg, 1 3xday with meals-for duonditis
              Ultram 50mg 1 every 4hrs as needed for pain
              Pyridim,100mg as needed
              Vicodin 5/500 as needed for pain
              Heating pad
              Ice Pack
              Arthritis Pain Equate brand 650mg usualy 2 at a time
              Stool softeners w/stimuli, 2am 2pm[/COLOR]

              Hopefuly no more gets added to the list!!!

              I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
              Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
              My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
              When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
              Dont forget to take care of you!
              Take care

              Comment


              • #8
                physical therapy exercises

                Hi, I'm glad I just caught stacy's note. I just started to go to p.t. for IC and I was looking to see if anyone was talking about if it helped them or no.
                So far it hasn't helped much, but the breathing exercises have helped to relax which helps with the 'bearing down' kind of pain.
                Basically what I've learned is to do MILD pelvic strenthening exercises (kegel and the reverse kegel you were talking about) while doing slow breaths using your diagphram. Another: Lifting one bent leg to 45 degree angle while tightening ab muscles then switch legs.

                Hope this helps.

                Comment


                • #9
                  Stacy,

                  Thank you for your reply. The information is very helpful. I am sorry to hear you have had so much trouble yourself. I beem walking each day and I hurt at night, so I take a percet. I think the walking at least making me mentally feel better. I go to the doctor monday and see what meds he is going to put me on. I will also find out more information about my IC. I was out when the doctor confirmed to my husband that I had IC, so I did not get the details. I hope you find something that works for you. It nice to know that there are people that understand. Thanks everyone..

                  Nina
                  Meds on now:

                  dextro 10mg

                  5000mg Vitamin D- when tested, I was sooo low.
                  Compound Hormones- Had hysterectomy when 24, ovaries out 37

                  At night:


                  4mg Zanaflex- Fibro & PFD
                  plendil- Raynalds

                  I have Fibro, IC, IBS, PFD, Raynauds.

                  Tried:

                  Past Meds
                  Lexpro- changed to Cymbalta for better pain relief –off both
                  Ultram – three times a day. Helped , I was tired of always being so tired.
                  Elmiron-took for a year-
                  Topamax-Did not need anymore since on dextro.
                  Atarax- did not need anymore

                  Pictures: Hubby & Me, Ozzy, My three Sons!!
                  What a proud Mother I am!!



                  .

                  Comment

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