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Painful cramping of neobladder and intestines

I am a 73 year old female who lives in Honolulu, Hawaii. In 2012 I had my bladder and urethra removed at Stanford University Medical Center.
I have a neo-bladder which within the past 6-8 months has been severely cramping when (I believe) is over-full. When I empty it, the cramping
has gone away.
This week I was awakened during the night with severely painful cramping of the neo-bladder PLUS my entire intestinal track. I called for an
ambulance and was diagnosed with a bladder infection at the ER.
My Urologist here is out of town until April and I have been unable to access the surgeon at Stanford due to the length of time it has been since
I had an in-person appointment.
My question is about the bladder cramping in general. Is this something that other survivors have experienced? Do they also have the experience
of having the intestinal track cramping as well? Are there any possible reasons for this to happen? And, if so, what can be done to prevent
it in the future?

Sincere thanks,
Kathleen Laurance

  1. thanks for reaching out. I am not medically trained and have an ileal conduit not a neobladder so can’t personally offer some help but hopefully others here can. Let us know how you get on with your medical team. Laura, Moderator,

    1. Hey i'm really sorry to hear this. I like Laura do not have any answers for this, but this sounds quite serious. Have you brought this up to your doctor? I'd recommend please starting there. Could you keep us posted? I hope you're doing okay. Jada ( team member)

      1. Thanks Jada. I live in Honolulu and my doctor here is out of the office until April. I have contacted my surgeon in California and am waiting to hear back from her. Meanwhile I am feeling better and have tentatively “diagnosed” myself with Crohn’s Disease. Intestinal cramping is one symptom and my neo-bladder is made of intestinal tissue. Sigh.....

        1. that sounds like a top guy. Wishing you well. Laura, Moderator,

        2. hi. How are you getting on? Laura, Moderator,

      2. I am sorry you are having these problems KatMar, I had a rectal bladder diversion 7 years ago and also experienced these cramping pains and frequent infections.
        I was prescribed anti spasmodic, pain, nerve meds and continue to use them but more so when I have an infection. I feel that when our ureters are ‘plumbed’ into bowel we are more likely to have infections.
        Wishing you well and some answers very soon, I will follow with interest.

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