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Calling all fellow bladderless folk - please help!

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  • Calling all fellow bladderless folk - please help!

    Hello all,

    As some of you may know, I had a Cystectomy and Neobladder reconstruction last September at the age of 27, and have had nothing but trouble since. I’ve had frequency and urgency from childhood. The pain started up when I was about 18, diagnosed with IC at 24. By the time of my operation my bladder capacity was 50ml, and the lab confirmed IC afterwards. One of my surgeons said it was the right thing to do as the bladder was ‘walnut sized’, the walls very thick and incapable of expanding.

    I’d like to ask if any fellow bladder-less folk can help me out. Since the op, the awful ‘lemon juice on an open wound’ pain has gone, only to be replaced to the same intensity of pressure pain and urethral soreness (not surprising when I have to self-cath 30 times a day). I had Botox injections into the trigone (this is the bladder base which has a high concentration of nerves) but it didn’t work- actually it hurt like hell!

    I have my own theory on why I’m still having major pain issues; I’m on Morphine and Diazepam as well as Tramadol, Gabapentin, Amitriptyline and Solifenicin, but I’d like to hear from you about your own experiences:

    1. What reconstruction did you have? (Neobladder, Mitrofanoff, Neo/Mitro mix, or Ileal Conduit)
    2. How long have you had this reconstruction?
    3. Did you encounter any new or remaining problems? (i.e. pain, frequency or urgency) If so what?
    4. Have you had any bladder/pelvic related treatment since the cystectomy?
    5. Have you had any nerve blocks since the cystectomy? If so please share your experience.
    6. Did you have to have a Neobladder or Mitrofanoff converted to an Ileal conduit? If so why?
    7. Is there a history of auto-immune diseases in your family? (E.g. Diabetes, Thyroid problems, ME, Fibromyalgia).

    If you find any of the questions too personal then just leave them. I’d be grateful if you could email your responses to my blog email address: [email protected]

    I’ll update the forum as to my treatment when I go to hospital (hopefully-as I can’t move at the moment!) next week.

    Thanks for taking the time to read this.


  • #2
    Donna, I just saw this post and I am off to bed, so I will try to answer all your questions tomorrow after I get out of work. Just so you know I had my bladder out in 1986- almost as long as you have been alive- freaky huh? I was 30 years old at the time. Anyway don't lose hope, I am doing great but it was not always like this. I promise I will write more tomorrow,Judith


    • #3
      I had my bladder removed in 2008. I had a ileal conduit. They did not remove my urethra at that time. All the bladder pain was gone. but I did have urgency in the urethra and was very upset they did not remove it. I also believed my trigon area was one of my issues.I kept telling my Dr. it felt like IC in my urethra and he said IC doesn't grow in the urethra. In 2009 one year later I had the urethra removed they sent it off to be looked at in the lab and guess what IC was in it. Oh they think they know it all. Once the urethra was removed I was pain free. I don't know much about your procedure but I use to cath over 40 times a day when I had my bladder and I would never want to do it again. I don't even want to feel the urge to pee ever again. this is my experience, I wish you luck. Keep your head up.
      IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets


      • #4
        Hello All, it's been quite a while since I have been here. A lot has happened , two surgeries to repair a post incisional hernia, the last surgery last March. It was brutal, the pain was unbearable. I had a plastic mesh put in to help prevent another hernia from occuring. My doctor told me to be very careful, do not lift anything or it will reoccur. As for the topic of discussion, I still have all the IC symptoms, I had when I had my bladder. Since it was removed, I have severe feeling of urgency, which is making my life very difficult. Along with the constant pain, I have constant problems with my pouch coming lose after one or two days. I have tried many different brands of wafers and so far nothing has worked. I also have bad skin problems around the stoma. many times my skin is weeping (wet) and this causes the wafer to lose the adhesive and it comes off. This is very stressful as I still work everyday(school bus driver) and I constantly worry about my pouch failing during work. Take care all, God Bless,



        • #5

          Have you tried coloplast. I had the skin irritation very bad like you it sounds bleeding & weeping. The coloplast products have little to no adhesive it sticks with the heat of your skin. I did have trouble with the pouch material of the one I need to use after my first hernia repair, but I find if I put down their skin barrier first then the pouch it is fine and sticks great. The skin barrier is not a spray or wipe. it is a 4X4 or 6X6 piece of material that you put over your clean skin. I also use the strip paste. this is the only paste that works for me. the other stuff in the tubes just don't work. If you havn't tried this company give them a call they will send samples and try to help you. my pouch I use isn't even in the catalog and they helped me find it. believe it or not this product healed my skin in about 4 days. Good luck I hope this helps.
          IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets


          • #6
            Bruce, as far as the skin issues the pouch may not be sticking cause of that. Forst you need to get it healed- have you tired using Cavilon no sting barrier spray? Or the are eakin seals that you can apply to the excoriated areas or duoderm to cover the skin and then put the pouch on top of that.


            • #7
              Late to the topic but.. can't they remove the nerves in the trigon area? Would removing nerves leave phantom pain?
              • 27 year old student
              • Had symptoms since I was 5
              • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
              • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
              • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
              • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..

              Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

              What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

              What didn't work: Elavil, vistaril (12/22)


              • #8
                I'm late here too.......I had my bladder removed in Jan 2010. I made sure that he removed my urethra as well. I now have an Indiana pouch and I love it.

                I did have many complications and still continue to have MRSA and have been hospitalized several times because of them.
                But I can tell you I do not have any IC pain. Once in a while, when I'm in the shower, I feel like I need to pee. but for the most part that is gone. Also once in a while when I have MRSA I will have pain where my urethra use to be.

                Yes, I have Fibro myself and I have family members with AI diseases as well. And I'm being checked for lupus. So, I do believe that there is a connection.

                Hope this helps.
                Hugs and blessings,

                Serenity isn't freedom from the's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....