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  • Hello everyone. I am new and Happy to be here

    toilet

    I guess this is exactly how I feel right now, is being in the Toilet night and day for two weeks now. I first want to say hello to everyone, and to say how very thankfull I am to have found this site. Also to have a computer now so I can be in touch with the world outside of my room which is where I spend most of my time these days. Not only do I suffer with IC for about 15 years now, but also Very painfull Fibromialgia. IBS, several bowel surgerys, and some kind of nerve damage they don't know yet what is the cause. I also spent two months back to back with acute and now cronic Pancrititis. I have a Hernia that needs fixing, and the lists goes on and on. I am soooo sick of being sick and in pain with NO-ONE that understands or to talk to. Everyone in family is pretty much tired of hearing about my pain which I don't blame them. They often tell me it would be better if I had cancer, then at least it would be over with. I go to bed thinking and somtimes lately wishing I did so I didn't bother them anymore. I have lost my husband, and my two daughters because of my illness as they just can't deal with it anymore. And the Drs are pretty much giving up on me to. I wounder why I keep going when it seems as if no-one cares if I do. I am sorry for going off like this being new and all, but I am in soooo much pain I just needed to tell someone.
    Thank you all. frown

  • #2
    Hi and welcome to the boards Katie. You will find loads of information. I suggest that you read the patient handbook and try the ic diet and see if that helps you. We are all different with our ic and pain and diets. what medications are you on? Are you on any pain meds for the pain? Please keep posting and let us know how you are doing.
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie

    Comment


    • #3
      Hello fellow BC-er! Welcome to the ICN I'm in Vancouver, what part of BC are you from?

      I can totally understand how you're feeling. The ICN Patient Handbook really helped me when I was first diagnosed, it has a ton of great information on many aspects of dealing with IC. Have you tried the IC diet? I follow it very strictly and it has helped a lot. Are you currently on any treatment or medication?

      Take care, Katie55, and welcome again!

      Alexa
      My story of healing and hope http://www.ic-network.com/patientstories/alexa.html

      Comment


      • #4
        Hi Katie,
        Welcome to the ICN. It sounds like you are dealing with a lot both physically and mentally. Don't give up. Just take this a day at a time and know there are people who care on here.

        Maybe once you can start feeling better your family will come around. Too many people don't understand what chronic pain and illness do to people. Maybe it would help if they would read some of the stories on here. Good Luck to you. Sending you hugs. grouphug grouphug

        Jolene
        Jolene

        "Life is what happens when you are making other plans" John Lennon

        IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

        Information for Patients can be found here.
        http://www.ic-network.com/patientlinks.html


        Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




        Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

        "IC 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."

        Comment


        • #5
          I'm so glad you found the IC Network. You'll definitely find a lot of support and information here. The Patient Handbook is at http://www.ic-network.com./handbook/ It contains diet information as well as data about treatment options.

          I hope one day soon you will find the treatment that works for you.

          Warm healing thoughts,
          Donna
          Stay safe

          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


          • #6
            Welcome, Katie! hi
            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


            • #7
              Hi there Katie and welcome to the ICN and the IC family. It certainly shows in your post you are dealing with a lot of pain, and I certainly understand the feeling of continuously being in the bathroom visiting the porcelain king frequently. I am glad you found us, and there are so many good people here who can understand what you are going through. I know that you will find a lot of helpful information, and support here. Take care and keep us posted as to how you are doing, welcoming hugs Iris. hi grouphug
              Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

              Comment


              • #8
                Hi Katie, really shounds like you have been through a lot and suffered a lot of pain. I believe I am someone who knows a lot what that is like.(((((((((hugs to you))))))))))))) I know what you mean about family not understanding, yet not blamming them....such a mess hardly can believe it yourself....Read my health story...which is missing things since so much wrong hard to remember it all at once here. Feel free to contact me if you need to, (Private Message or email)I have thought myself that cancer would be easier not sure how comfortable I would be with family saying that though, so sorry.

                I wish you a lot of relief, and since I am one who sometimes feel the need to talk to the multi diseased because the huge mess is more of a problem than the individual diseases...I would love to be your friend. grouphug
                Faith, Hope, and Love,
                Katrina


                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 http://www.facebook.com/kat671?ref=profile
                Be the Miracle! & Pay it Forward!

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

                Comment


                • #9
                  Katie grouphug
                  So sorry your going through a hard time
                  This site will help you alot trust me it has helped me more than I can say everyone here is special and make you feel like family.
                  I hope your New year will be better!
                  "Happy New Year"
                  Be grateful when you are feeling good,and graceful when you are feeling bad

                  Comment


                  • #10
                    Katie,
                    Hugs and prayers to you...I am so glad you found this site, it has been a "lifesaver" for me. Everyone here is so very supportive, and it helps to be able to have others to talk to who have been there and understand. I ordered the "newly diagnosed" kit from here, and it has been so helpful, if you can order it, I highly recommend it. Please keep us posted on how you are, and know that we care,
                    Kandy
                    Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain



                    DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
                    I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
                    I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
                    Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
                    Elavil and Ditropan-severe bladder retention
                    Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
                    Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.

                    Comment


                    • #11
                      Welcome to the ICN family !!
                      Sue C.~
                      [email protected]

                      Comment


                      • #12
                        Hi
                        I am new to this message board. I would like to know how you all can sit at the computer for so long and chat without pain??? I sit for just a few minutes and have to get up.
                        Any secrets to help... I have an IC cushion and it does not help.

                        Comment


                        • #13
                          Hi Annie, you asked about sitting for so long at the computer, I try and sit for a while, then I get up and do something else, and then go back. I also have two cushions on the chair in front of my computer, just regular ones I sit on. I have an IC cushion for the car. A lot also depends on how I am feeling that day, sometimes I can sit longer than others. Some of the other gals might have suggestions for you, hope you get some good ideas, take care Iris hi
                          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

                          Comment


                          • #14
                            Hi Katie

                            I'm so sorry that you feel so badly. I understand because I have been in such bad pain and pretty much alone with it many years. At one time expert Drs. wanted to take my bladder out, calling it end-stage bladder. After years I learned I had another disease for which I take medication daily. Now I have improved greatly, and for the most part only my close family, my Doctors, and here at ICN have any idea what I have been through.

                            I'm very curious when you mention that you have nerve damage, where is this? How does it affect you? Is it on both sides of your body? Is it ache or burning or a combination of numbness. I am asking because I also have nerve damage. My Dr. calls it peripheral nerve damage. It caused me to have bowel damage and painful sciatica in my hip and back for years. Recently, after doing some reading on this, I asked my Dr. just where is this nerve damage and he said it is throughout the body. My nerve damage was very severe but the nerves are healing slowly now.

                            Please share what is your nerve damage like? Perhaps you are like me and I might have information that you can look into. You can post here or send a private message.

                            The good news is that the medication I am now taking has helped a great deal. I just wanted to share this with you, because I want you to know you are not alone, and that with the help of the good people here you will have the strength to fight this.

                            Please share with me about the nerve damage, I do pray I can be of help.

                            Sincerely with love and friendship, Silverfox

                            Comment


                            • #15
                              Hi Annie,
                              Have to agree with Iris, I sit for a few minutes, usually on the edge of a padded chair, get up and go to the restroom, and come back, or I log off and check in later...Take Care,
                              Kandy
                              Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain



                              DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
                              I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
                              I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
                              Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
                              Elavil and Ditropan-severe bladder retention
                              Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
                              Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.

                              Comment

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