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  • #16
    Family response to Cystectomy

    I have communicated with Judith and Jill via e-mail and found them to be very helpful and comforting. I have an end-stage IC bladder which worsened in August of 2010 (I may have repeated some of this earlier) when my uro wanted to do a C & H to see if it would relieve my excruciating bladder and pelvic pain. Unfortunately instead of helping, it caused my bladder to perforate and I had to return to the ER in an ambulance. The time since then has been very difficult. My pain is significantly worse and the U & F which were tolerable have become like the pain: more and more intolerable. But as I have told Judith and Jill, I have many qualms about the cystectomy due to having 12 abdominal/pelvic surgeries, many other procedures, instillations and 2 MVAs over the past 35+ years. It took 22 years to get a diagnosis of IC for my pain followed by a MVA which fractured my pubic bone and made differentiating between the pain also very difficult.
    I like some of you have had most IC treatments in the book and my uro said my last option is the cystectomy.
    He said if he had known the terrible condition of my bladder he would never have done the C & H and said I have the worst bladder he has ever seen in his years in Urology and I was on CIPRO 500 twice a day for a week. The pain was so severe I couldn't sleep and felt like the wreck of the Hesperus!! I am feeling slightly improved after taking the CIPRO but I know it won't last long.

    I wanted to ask about my husband. Normally he is very understanding and supportive but today we had a strong discussion where he felt I should be able to change my reaction to the negativity I am getting from my two children (aged 34 and 36 with children of their own) by the use of my brain! I said to him the pain is in my bladder, not my brain, and also depression is the fourth symptom of IC listed in Dr. Moldwin's book. I don't feel I can control the hurt and upset I feel toward my children (one of whom is a nurse) by using my brain to not let their attitude toward the IC and therefore me cause me stress which makes the pain worse.
    Are there any "psychologists" out there who can give me any advice or suggestions in coping with this very upsetting and hurtful issue. I spoke to a different uro the other night and he told me "I am at the end of my rope". I told him he must be reading my mind!!
    Many thanks,
    Louise

    Comment


    • #17
      Hi, Louise ~ I don't have any advice to offer but want you to know I'm hearing your plea and care about the difficulties you're dealing with. Maybe someone qualified will answer your questions soon.

      Blessings,
      Ginger
      Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

      11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
      8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
      8/2010 Surg gallbladder
      TREATMENTS (updated 4/15)
      IC Diet since 8/2009 (Able to vary 4/15)
      Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
      Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
      Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
      *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
      Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
      PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

      Comment


      • #18
        Louise,
        My best advice would be to find a therapist that specializes in treating people with chronic health issues. It may be worth it to see them as a couple as well as you seeing them by yourself. Maybe they can help you and your husband sort out ways to deal with the situation. Hugs,Judith

        Comment


        • #19
          Re: Growing bladders

          Just a quick note regarding bladder removal. I've lived in both Ontario and Manitoba since getting IC. My urologists in both provinces have told me that for the numerous patients they've removed their bladders from, every one experienced the return of pain. In many cases, it seemed successful for up to a year, then the pain returned with a vengeance. However, it was too late, and they regretted having it done....they needed to be bagged for the rest of their lives. Doctors, here and in southern Ontario, now refuse to remove bladders for IC patients.

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          • #20
            Re: Growing bladders

            hi I live in Edmonton Alberta....I wish I hadn't seen this......since I'm in so much pain for years. So many things have been tried so there's nothhing left. I really don't want the cystesctomy....but the Uro and GP says there's nothing left for the excruciating pain. Taking the most potent pain medications by prescription and it's not working any more....I'm so desperate to stop pain. I can't take it anymore. I go every 15 minutes and haven't had any sleep for years.

            Comment


            • #21
              Re: Growing bladders

              Originally posted by Susan Joyce View Post
              hi I live in Edmonton Alberta....I wish I hadn't seen this......since I'm in so much pain for years. So many things have been tried so there's nothhing left. I really don't want the cystesctomy....but the Uro and GP says there's nothing left for the excruciating pain. Taking the most potent pain medications by prescription and it's not working any more....I'm so desperate to stop pain. I can't take it anymore. I go every 15 minutes and haven't had any sleep for years.
              So sorry for what you are going through. I do understand having been there 30 years ago.i put off the surgery as long as possible, but I finally went through with it when I realized how my bladder was impacting my family. At the time I was 30 and had 2 kids under the age of 4. After the initial healing period my life improved greatly. I loved not having to worry about where the bathroom was and that I could drink lots of fluids and again not worry about being near a bathroom.so as scary as it can be try to focus on the positive things can happen.

              Comment


              • #22
                Re: Growing bladders

                thanks I'm glad it worked for you, maybe it'll work for me, I'm seeing the Uro tomorrow morning...I'm up 20x at night and as many times during the day. I was in an awful accident. I haven't slept much for over ayear and 1/2. It's April 18th 2017. I feel I can't take it anymore....you'd think there would still be something else. I'll try to get some sleep.

                Comment


                • #23
                  Re: Growing bladders

                  I had my bladder removal surgery 10-31-17. I have been busy adjusting to my new life and haven't visited this site for awhile. I was 68 with a very damaged bladder. I was working with one of the international experts in ic. He finally decided it was time for bladder removal surgery and I took his advice. He referred me to his friend, who was an experienced urologic oncologist and I call him my angel. He was a real artist. He was amazing and I had excellent care. Upon waking up from surgery, I knew my bladder pain was gone. I just had to get over the major surgery. I will be glad to go into more detail. Again I practiced wearing a bag on my belly pre surgery, I read others experiences. I watched you tube on how people cared for and cleaned their stoma + dressed to cover the bulge. You have to be prepared and sure about your decision. For me, it was the best decision I could make. I have no regrets. Yes, there is an adjustment. Your body is permanently altered but bladder removal is less complicated, with fewer risks than going the rebuild route. By the way, I play tennis, walk several miles a day and I get to sleep all night hooked up to a night bag. I remember the suffering and the struggles. I wish you courage as you consider what is best for yourself and your family.

                  Comment


                  • #24
                    Re: Growing bladders

                    Originally posted by iamcurious1970 View Post
                    I had my bladder removal surgery 10-31-17. I have been busy adjusting to my new life and haven't visited this site for awhile. I was 68 with a very damaged bladder. I was working with one of the international experts in ic. He finally decided it was time for bladder removal surgery and I took his advice. He referred me to his friend, who was an experienced urologic oncologist and I call him my angel. He was a real artist. He was amazing and I had excellent care. Upon waking up from surgery, I knew my bladder pain was gone. I just had to get over the major surgery. I will be glad to go into more detail. Again I practiced wearing a bag on my belly pre surgery, I read others experiences. I watched you tube on how people cared for and cleaned their stoma + dressed to cover the bulge. You have to be prepared and sure about your decision. For me, it was the best decision I could make. I have no regrets. Yes, there is an adjustment. Your body is permanently altered but bladder removal is less complicated, with fewer risks than going the rebuild route. By the way, I play tennis, walk several miles a day and I get to sleep all night hooked up to a night bag. I remember the suffering and the struggles. I wish you courage as you consider what is best for yourself and your family.
                    Thank you for sharing your experience.


                    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


                    • #25
                      First of all, before consideration of bladder removal for ic symptoms, you have to be diagnosed with hunner’s lesions. They are distinct ulcerations attached to the bladder wall. Hopefully, various washes and treatments are tried first. Check with Jill for the list of urologists that specialize in hunner’s treatment. They have several procedures before surgery is recommended. Because hunner’s is a bladder condition, you need to work with a specially trained urologist. Some of the treatments on the guideline are inappropriate for hunner’s. I learned the hard way and my angry bladder got worse. It is worth it to work with an expert even if you have to pay out of pocket costs.

                      Comment


                      • #26
                        Originally posted by iamcurious1970 View Post
                        First of all, before consideration of bladder removal for ic symptoms, you have to be diagnosed with hunner’s lesions. They are distinct ulcerations attached to the bladder wall. Hopefully, various washes and treatments are tried first. Check with Jill for the list of urologists that specialize in hunner’s treatment. They have several procedures before surgery is recommended. Because hunner’s is a bladder condition, you need to work with a specially trained urologist. Some of the treatments on the guideline are inappropriate for hunner’s. I learned the hard way and my angry bladder got worse. It is worth it to work with an expert even if you have to pay out of pocket costs.
                        Bladder removal is considered based on different symptoms/conditions --- most doctors will not consider this as an option until many treatment options have been tried and failed. I have been diagnosed with Hunner's ulcers --- my urologist does not specialize in IC, but is familiar with it and keeps up with treatment options available. It's important to have a physician with whom you can communicate and who has time to listen.

                        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


                        • #27
                          Is anyone familiar with a new test for Hunners lesions (ulcers) developed by Laura Lamb? It was developed almost 3 years ago and uses urine to determine cytokine levels. It wasn't available at the clinic I go to, but I was wondering if anyone has had it done.

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