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  • ic may be back

    Hiya guys

    Havent been on here for a while as a lot has been happening.
    Had my bladder removed in sept 05 and all was great. Got pregnant a few months after and gave birth to a beutifull baby boy in Jan this year. Things were still great no pain, urgeny infections nothing until a couple of months ago.

    The pain is not as constant as it was before the op but it's the same pain.
    I get no urgency but i do get a lot of green gunk from my mitro and my uretha, i am starting to leak down there also and have to wear a pad constantly. Trying not to go on pain meds at this stage as enjoying life without them but i know i will eventually have to make an appointment with my GP soon to get them.
    I have tried calling my Uro doc but will have to wait a good few months to see him.
    I am very scared an hoping that IC has not returned even though i know it will sometime but surely not his soon..............
    I know we have alked about thisbefore but can stress be a part in it as my father in law (who i treat as my father as mine treats me like crap) has just been diagnosed with bowel cancer and is in-operable. also can it be the difficult labour that has brought it on.

    If someone can give me a little advice that would be much appreicated.

    Thanks

    Vicky & Ethan
    XX

  • #2
    If this is the first time you have had "green gunk" you might want to be checked to be sure you don't have an infection working. Hopefully others will respond who know more about bladder removal.

    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
      That was my thought, too. Maybe if you mention the green gunk to the uro you would be able to get an earlier appointment? At the least see your GP or go to an urgent care to make sure you don't have an infection.
      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


      • #4
        I'm confused, if you had your bladder removed, how does the IC come back? I'm so naive sometimes, just trying to understand, thanks.
        I wouldn't definitely get checked though if you having green discharge still. Hope your feeling better.

        Kari
        Kari

        I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

        Comment


        • #5
          hiya
          Yes IC can come back at any time. It's something to do with the Urine that makes the bladder wall diseased hense why we cannot eat/drink citrus type foods. I had another bladder re-created out of my intestines which i emoty through a mitro hole in my abdomen.

          Wen to the GP ref the green gunp and he is no help what so ever.he tested for infection which came back clear. He has no idea what to do

          Thanks

          Comment


          • #6
            Geez, you can have your bladder removed and then still have IC return? That seems so unfair.....I'm sorry your Dr. didn't help you, maybe you should go to another Dr. that can? Hope you get better soon....

            Kari
            Kari

            I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

            Comment


            • #7
              Even though it's unusual, the IC can come back after bladder removal.

              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


              • #8
                But if you have your bladder removed, then where is the IC coming back to? I feel really stupid, but I'm just puzzled.

                Kari
                Kari

                I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                Comment


                • #9
                  Kari, there is so much we still dont know about IC, that I dont know how to answer your question. We do know that many people with IC also have other auto-immune type illnesses, so maybe it is somehow all connected? While I no longer have my bladder, it was taken out over 21 years ago, I still ahve some symptoms with my internal pouch. I found out last summer that I have IBS in my internal pouch which again is related to the whole class of illnesses that tend to go along with IC. So while I don't have IC in my pouch I do have a similar type of problem in my pouch which is made from my bowel.
                  Vicky, like the others I was thinking that you may have some type of infection, just out of curiosty did they culture your urethra? Since you still have the urethra, you may want to ask the uro when you see him if it is possible to still have IC in the urethra. If so maybe if they remove it then your symptoms will get better? A big congratulations of the birth of your son! Judith

                  Comment


                  • #10
                    Thanks Judith for trying to explain that for me. I guess I just assumed that IC is a bladder condition that if you didn't have your bladder, Voila' no more IC!! Guess I was wrong. This disease is so complicated as you say, I guess nothing is for certain. It's sad to think that you could have your bladder removed and then still have problems. I'm sorry your having the problems your having, it's really sad....Well thanks again for enlightening me, I'm still trying to figure it all out.

                    Kari
                    Kari

                    I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                    Comment


                    • #11
                      Vicky !!!

                      Hi ya hunny, I have been very unwell and have not been on here or COB for a while, how is the little guy?
                      I am sorry you are having probs at the moment and hope that your uro can sort them out for you soon.
                      I am 3+ weeks away from having the rest of my bladder removed and a neobladder.
                      I am having my ureter removed because of pain and leakage etc.
                      My bladder is in excruitiating pain right now(bet I spelt that wrong), and I have a hernia on my mitrofanoff which is to be removed in surgery.
                      I have tried emailing you but can't send it for some reason.
                      Give Ethan a kiss from me won't you and look after yourself ok.
                      love Jill.xxx
                      I have had IC and PBS for 20+ years.
                      Tried every medication I can think off.
                      Had a Clam Cystoplasty with Mitrofanoff in November 2006.
                      Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
                      4th october 2007.

                      Check out my profile on www.myspace.com/surreychick.
                      if you want to know more about me.

                      Comment


                      • #12
                        Hi! I had a total Bladder removal at First and they did leave my Ureatha in. Well a Year Latter I had to have my ureatha removed cause I was Passing Green Stuff. On me at the end of my Ureatha I was trying to form another Bladder. It was the size of a Golf Ball. At First I had to get Cathed to Drained the geen stuff out. It had a Foul Smell. The they went back in and took out my Ureatha and that stopped the Green stuff.
                        If you need to know More Let me Know.

                        I hope this Helps. It did happen to me. You do need to see the Uro again and tell heim. Please do not Put it off Okay

                        Hugs
                        DebbieD

                        Comment


                        • #13
                          You can Still have IC ecen if your Bladder is removed. I still have it. I had my Bladder removed 23 years ago. Then in 2004 I had my Kidney removed cause IC attacked my Kidney. Believe me you still have the IC in the Urinary tract. I have a Great DR. for 35 years now. We have Battled this for years and Years.

                          I hope that you Feel Better. Now Remember That IC affects different People in Different ways Okay.But I would Talk to your Dr amd Please Let him/her know what is going on Okay.

                          DebbieD

                          Comment


                          • #14
                            Vicky we haven't heard from you lately and I hope the no news is good news. How is your wonderful baby boy? I just hope all is well and hope you the best.

                            Take care, Trishann

                            Comment


                            • #15
                              Hiya all,

                              Thanks very much for the replies. it has helped.
                              I have been up and down the last few days, not just me but little ones teeth are annoying him.

                              Debbie- can you go into detail about the uretha removal. Just so i am prepared if the time comes for me to have it removed also. I wont be scared off. I also have green stuff coming out down there and also my mitro hole. it is deff not an infection as tests came back all clear.
                              Have gone back on the ic diet now. It is much harder with a little one. Sometimes i dont have thne time to think about what i'm eating as i have to stuff it so fast. he he he

                              Jill- I will e-mail you soon and hope everything goes ok with this seccond op.

                              Thanks again

                              Vicky
                              X

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