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  • bladder removal scheduled

    I just wanted to say thankyou to jill and this board because through this message board - I have met some wonderful people, one of which led me to my surgeon/urologist. The last modality tried was sacral neuromodulator for 16 days trial- it did not work, bladder pain,frequency, urgency was the same (I know it does not help pain). I have tried all the meds - elmiron, elavil, msm, n-acetyl glucosamine, atarax, neurontin, cytotec, Diflucan, Sporanox, Coral Calcium, Pain Rx (major rip off), Butcher's Brew (major riboff), MSM gel (doesn't do anything), nerve blocks to back, DMSO treatments x 6, Lidocaine and Bicarb/heparin instills, hydrodilation. Got ovarian cancer this year from progesterone cream and climara patches. Had complete total hysterectomy and ovary removal. Nothing worked, I am still in pain in my urethra/bladder and my bladder just refuses to hold urine comfortably like it used to 2.5 years ago. So on August 17, 2007 I wave the white flag of 'I surrender' and am having the best urologist/surgeon in the USA do a cystectomy/urethrectomy/ creation of continent pouch and remove the leads from the interstim. I am counting the days- it is now less than 2.5 months. I really have no one to help me, some relatives in L.A. (location of surgery), but the wife of my cousin isn't interested in letting her husband help me. I am alone, have no husband, boyfriend or parents. Have some useless siblings- who just ask for money for their kids. But I do have God and I believe that he led me thru someone on this board (Lesa) to my doctor and he will somehow provide me with help. Even if I have to crawl out of my hospital bed to get better I will. I just want to be freed out of the prison called Interstitial Cystitis- painful bladder. So for those of you who do pray to our God- please pray that he will provide me with someone to help me after surgery- eating, walking, personal hygiene- things that will be extremely hard to do at that time, also pray that my health insurance will completely cover this surgery.
    They have covered everything up to this point.
    Thank you, Aileen

  • #2
    I hope the best for you.
    Is there a local IC Support Group that could help you with meals?? That's my biggest hang-up after surgery--food!! Take care~angie


    • #3
      Aileen...I hope that this is the beginning of a brand new life. (((hugs)))

      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

      Where I can be found most days.

      Link to the ICN Patient Handbook:

      Link to the IC Diet:

      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.


      • #4
        You may want to look into the possibility of a convalescent care center for those first weeks after surgery. It's a big surgery and you're going to need some care for a while.

        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        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:


        Diet list:

        AUA Guidelines:

        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.

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


        • #5
          Donna- thanks for the advice regarding the convalescent center- but being a home care nurse, I have been in many of those- and when I am in there all I can think about is finishing whatever it is I am doing with that patient, and getting out real quick. They are filled with germs and bacteria and lots of sad cases of depression- not a place I would ever want to be as a patient. Sorry!!!!


          • #6
            Aileen, I am glad that your surgery has been scheduled and you can look forward to living life without the bladder that is causing you so many problems. I am here if I can answer any questions you may have.Even though you will probably be pretty wiped out initally afterwards, you may actually feel pretty good without the bladder and be able to do more than you think. I would think about freezing meals beforehand so that when you go home all you will have to is defrost them and heat them up.Since you are a homecare nurse you probably are more familiar with the serviuce available in your area than most people are. Do you have home health aides that come in and give folks a hand if need be? That may be an option for you until you feel up to doing things all for yourself again. I would encourage you to call your insurance company to make they will cover things at 100 percent, you don't want any nasty surprises coming at you later on! I hope this will be the end of all your troubles. Have you marked off the days on the calender? Judith


            • #7

              You do need to let them know you are on your own. Maybe the social workers knows how to get nurses or help for you. That is what they do and maybe there is a possibility for you to get help after the surgery. I hope so.

              I hope wonderful things for you and I hope you the best.
              Sending hugs, Trishann


              • #8
                I am so glad you made a decsion, I know it was hard for you! I know that you will be glad to get rid of the pain. Someone mentioned freezing meals ahead of time for when you get home , that is a great idea! I hope you enjoy your orange juice! God will tske care of you!
                Love Hugs & Blessings,


                • #9
                  Your bladder removal post

                  Jeremiah 29:11 "For I know the plans I have for you,"declares the Lord,"plans to prosper you and not to harm you, plans to give you a hope and a future." I just got through reading your post and this is what came to me. Hang in there. God is in control and I know you believe it by the post you made. Just let go and let God. He will do anything for you that you need and provide the finances and the help. I am believing for you. and praying and I know everything will be all right. Let us hear from you asap.

                  Your sister in Christ


                  • #10
                    Judith and Eva, Trishann and Sandy Marie- thank you all so much for caring about me. Lesa--especially you girl, you know!! I will meet you in Seattle for a nonalcoholic Strawberry, Kiwi, something to drink, I promise. To update you all, After the surgery I stay at UCLA med center for 1 wk, then transfer across the street to the Tiverton Hotel- connected to UCLA. I will have a hotel room with 2 beds, bathroom and little refrigerator. that is how I will live for 3 more weeks, so I can be near my doctor (around the corner from the hotel) for that time. There is a little kitchen on the first floor of the hotel that the guests can use, big refrig, stove, microwave, toaster- i will try to heat up some things there. And across the street is Ralphs grocery story with really good macaroni and panini(s). I know I won't be able to get over there, but I am hoping that I will find some help who will help me do these things, I will speak with the insurance co and see what is avail to help me since I am an unusual case- completely alone. And I do know that the case managers in the hospital should be able to help me with after hospital care. Judith- I think I am going to do what you said and start marking off the days on my calendar because the bladder/urethral pain is getting worse daily and 3 months feels like 3 years. I think that will help. Also, I am working as much as I can to get my mind off of the pain, but it is amazing how such a small organ- the urinary tract- can reach such havoc in the mind and body of a person---once again you all know. I can't wait till about sometime in mid SEpt when I can tell you all what it feels like to drink o.j., lemonade, sit and walk and work and ask pts if they have dysuria and not even remember what it feels like to be in pain. I have a lot to look forward to. YOur friend, Aileen


                    • #11

                      Thinking of You! Praying for better days ahead and a better quality of life!

                      You know where to find me if you need anything.

                      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                      I also have some journals of my journeys, past and some present at:

                      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


                      • #12
                        thanks Kara, what you have been thru helped me with my decision.


                        • #13
                          Hi Aileen,
                          Don't have much to add to what the others said, besides also recommending talking to a medical social worker about help when you are out of hospital.
                          Sending a hug & prayers that this surgery will bring you freedom from pain & help you lead a life of your choosing
                          You are not alone-- John 14:16-20 & 26.

                          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.

                          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                          Source - Pinterest

                          Current treatments:
                          -IC diet
                          -Elavil 50mg at night
                          -Continuous use birth control pills (4-5 periods/year)
                          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                          -Pyridium if needed,
                          -Pain medicine at bedtime daily, as needed during the day several times per week
                          -Antibiotic when doing an instillation to prevent UTI
                          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                          -Dye Free Benadryl 50 mg at bedtime
                          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                          -Managing stress= VERY important!
                          -Fur therapy: Hugging the cat!


                          • #14
                            Glad I could offer some helpful advice. I have lots more, so let me know if you want any more tips about going through it