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  • Struggling With IC

    I am new to all of this and am really looking for some help getting on the right track. Anything you can help me with would be appriciated. I have read through the email threads in the IC help site but none seem to address my particular situation.

    First of all, I am a male and have been clinically diagnosed with IC. On elmiron, hydroxyzine and amitriptyline. I have all the typical pain, urgency and frequency that everyone else seem to suffer through. The difference is that when I am at home, I am almost symptom free. As soon as I leave the house, the urgency is very bad and if I can make it to the office, I am in the bathroom every 3 or 4 minutes. Sometimes worse.

    I would really appreciate any suggestions anyone can offer or if you can point me in the right direction.

  • #2
    to the IC Network. Have you read the information in the Patient Handbook (link is at the top of this page)?

    One thing you might try is to keep a very concise diary of everything you eat or drink, activities, pain levels --- showing times. Are you following an IC diet? Avoiding coffee, juices, sodas, acids? Are you drinking enough water?

    If you're uncomfortable in your car or with sitting in general, there's a pillow available in the ICN Shop that might help.

    Hopefully, the elmiron will begin helping soon. It can take up to six months or more to become effective.

    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


    • #3
      Thank you Donna

      Donna ... thanks for the helpful hints. I am following a strict diet and have learned a lot from reading the handbook and member threads. I am at a loss to understand why when I leave the house, my urgency increases dramaticaly. This happens regularly and imeadiately. I need to go every 3 or 4 minutes. Lately at home, I have been lasting about 2 hours.
      I am guessing that it has something to do with fear.
      I have not talked to anyone with IC and am thankful that this support group exists. If you are the Donna that helped me register last night I would like to really thank you for letting me in. I am desparate for help right now and you seem like a very kind person from reading your encouragement to others. Thank you. R

      Comment


      • #4
        Welcome, Rudy! I wonder if there could be a connection between stress and your symptoms? It is well known that stress can aggravate IC symptoms.

        It sounds like your symptoms aren't controlled well enough to allow you to live the kind of life you want to - maybe it's time to talk with your doctor about possible additional therapies to get you where you'd like to be.

        Blessings,
        Lori

        Comment


        • #5
          Hi Rudy~ You could be definitely experiencing anxiety about the IC and having to go to work or anywhere else, brings the symptoms on. I know for me that if I'm home, I know I'm more relaxed because a bathroom is a few feet away. I too get anxious about going anywhere - for example college--I'm a 40 year old pre-nursing student. I fear I'll have to go the restroom several times within a two hour class period. Work is expecially difficult because I'm a part-time Longshoreman for the Port of LA and when I work against the ship under the cranes, a bathroom is not close and can be a shuttle ride away. But I do what Donna has suggested by keeping a log of what I drink and eat. I drink less on the days I know I am in class or work and just sip throughout the day rather then drinking an entire galss at once. Also the IC pillow is great. I could spend a long time sitting at my desk studying now where as before, I quickly became uncomfortable from the pressure of sitting on a harder, surface. Rudy, is your pain a burning sensation or is it a regular kind of pain. I had both burning and pain at different times. Last week I have since switched to Evian water (occasionally Arrowhead) and also am taking 2 or 3 Prelief tabs before each meal. (Prelief takes the acid out of food). I cannot tell you enough the difference the combo has made in the burning. It has signifcantly improved. I still get some pain and spasms (mostly in the evening and late night). I find a heating pad is very helpful for that. But I am going a week now and have noticed an improvement with all the symptoms. If my husband and teenage daughters see a happier Mom then they know I am feeling better. The IC Handbook is also very helpful and I am sure you will find it is too.
          Hang in there. I was finally diagnosed this year on January 4, 07 and today I feel like I can handle this. I have read so much information-ordered books off this website, keep a notebook of all questions addressed to the Drs and treatments attempted, and log a daily journal of all foods eaten, how many bathroom visits and generally howI felt that day. This last week was a great week. Remember to take one day at a time and to not think too far ahead. You will get through this and find your zone:-)
          Take care.
          Peace
          Danica


          Stopped taking Elmiron for the time being-- could not tolerate side effects

          ADARAX 25mg at night and at times morning
          Calcium mag citrate w/ vit.D
          Prelief 8 to 10 a day
          Cystoprotek 4 a day
          MSM

          ~God's mercy and grace are infinite~

          Comment


          • #6
            PS Rudy~ Go to the heading "Managing IC Flares" and in the sub-heading "Flare coping Strategies" and click on "New Forum." There are so many people sharing their ideas in pulling out flares. It is highly informative.
            Take care.
            Peace
            Danica


            Stopped taking Elmiron for the time being-- could not tolerate side effects

            ADARAX 25mg at night and at times morning
            Calcium mag citrate w/ vit.D
            Prelief 8 to 10 a day
            Cystoprotek 4 a day
            MSM

            ~God's mercy and grace are infinite~

            Comment


            • #7
              Most ICers will tell you that their urgency and pain gets worse when they are in the car -- nobody knows why, but it could be the vibrations you experience while riding. That in itself can cause you to flare up for hours even after you get out of the car.

              Also, yes, fear can play a part -- if you don't know where a bathroom is, if you feel trapped without one (like in the car), if you're stressed out (perhaps you are stressed at work?) -- all of these things can work together to make urgency/frequency worse.
              ****
              Jen

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. 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.

              Comment


              • #8
                thank you Danica and Lori

                Thank you for the excellant feedback and support. It lifts my spirits to have some one to relate our struggles and to read about how well others cope with this disease. I am very thankful for your suggestions and for this network. For the last 7 weeks, I have been left to manage this with a well intentioned family doctor and my own wits. I was hoping that I would see some improvement soon ... I have been very disaplined about my diet and medication. It looks like I am really just at the start. Rudy

                Comment


                • #9
                  Rudy, remember to give Prelief a try. It really cuts the acid out of your food. And also switching to a nonacidic water like EVIAN...it may make a difference.
                  Peace
                  Danica


                  Stopped taking Elmiron for the time being-- could not tolerate side effects

                  ADARAX 25mg at night and at times morning
                  Calcium mag citrate w/ vit.D
                  Prelief 8 to 10 a day
                  Cystoprotek 4 a day
                  MSM

                  ~God's mercy and grace are infinite~

                  Comment


                  • #10
                    thanks for the feedback Jen

                    Jen, I do get some comfort/relief with the heated seats turned up to full when I am in a car and I have read where heating pads are a common tool for people with IC.
                    I am hoping that I can find a med or relaxation tool to overcome my problem when leaving the home.
                    I am an executive with a large firm and my responsibilities include a significant amount of airline travel and facilitating or attending meetings. I have been grounded as there is no way I can sit in a plane for longer that 5 minutes without extreme urgency. Recently on a crowded train, I virtualy ran over people to get to the bathroom. Most of my meeting are now held by tele-conference where I call in from home but I can't rely on this for much longer and am desparate fpr a solution.
                    Thanks again for helping me. Everyone has been great.
                    Rudy

                    Comment


                    • #11
                      Prelief is not available in Canada

                      Danica, thanks for the tip. Prelief is not available in Canada and my druggist has not been able to offer anything else. I tried the baking soda method with no success. Am surprised that there are difference with the bottled water though and will try the Evian.
                      Thanks,
                      Rudy

                      Comment


                      • #12
                        Oh, I understand the work frustration -- I am a research scientist and my IC has gotten in the way many a time. It gets in the way of my experiments -- there I am trying to do something time sensitive and all of a sudden the urgency comes. Last time I had to fly to an international meeting, I of course had to go to the bathroom the second they said "Fasten your seatbelts, we are beginning our final descent." Soooooo painful and frustrating.

                        I do suggest that you check out our ICN Shop -- there are special cushions one can buy there that have helped me in the car and on planes. Also, there are "restroom access cards" -- kind of like a medic alert card that informs the reader that you have IC, gives a little info on IC, and explains the need for the restroom. I often show these to flight attendants when I board planes, and I either book an aisle seat or at least a seat near the bathroom (preferably an aisle seat near the bathroom ). The card has been very helpful when I've suddenly needed to jump up during a time when you normally may not get up during a flight....
                        ****
                        Jen

                        *Diagnosed with severe IC in 2004
                        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                        **I am not a medical authority nor do I offer definitive medical advice. 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.

                        Comment


                        • #13
                          makes sense

                          Great suggestions. Will definately do that. Thanks Jen ...Rudy

                          Comment


                          • #14
                            Rudy~ Prelief is in the the ICN shop under acid reducers if you want to give it a try...also the IC seat pillow too. Both have been very helpful.
                            Peace
                            Danica


                            Stopped taking Elmiron for the time being-- could not tolerate side effects

                            ADARAX 25mg at night and at times morning
                            Calcium mag citrate w/ vit.D
                            Prelief 8 to 10 a day
                            Cystoprotek 4 a day
                            MSM

                            ~God's mercy and grace are infinite~

                            Comment


                            • #15
                              Welcome to the gang, nice to see you here!!!
                              Hugs,
                              Tracey
                              How do you eat an elephant? One bite at a time...

                              Harry arrived 2/23/09!



                              *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.

                              IC Diet Cheat Sheet:
                              http://www.ic-network.com/diet/2009icdietlist.pdf



                              Dx's:
                              IC dx'd Nov 2004
                              Lymphocytic Colitis dx'd July 2005
                              Possible IBS
                              Current IC Meds
                              Vistaril 25mg in the evening
                              Previous IC Meds taken:
                              Cystoprotek - 2 caps 2x's a day
                              Elmiron, 100mg 3x's a day
                              Ditropan, 5 mg 3x's a day
                              Others:
                              Wellbutrin 150mg 2x's a day for Anxiety/IBS
                              Pepcid 40mg a day for GERD
                              Zytrec for Nasal Allergies
                              Align Probiotic daily for IBS

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