After having a KPOUCH for almost thirty years in 2010 the valve began leaking badly. Unfortunately the doctor in Houston no longer did that surgery. I had to go to California from Texas to have the Kpouch changed to the BCIR and moved to the opposite side. About a year later I began having pain where the rectum use to be. It has gotten progressively worse ever since. The pain is constant every second of everyday for going on nine years now.It feels like a steak knife is jammed up my bottom stabbing and twisting all the time. I’ve talked to three other BCIR patients who are suffering from the same thing. I’ve had a spinal laminectomy, hysterectomy, nerve blocks, nerve burns, Botox injections, stem cell injections, three different nuro Stimulators, acupuncture, and on and on but the pain never stops. I’m certain the pain is from scar tissue that has adhered my pouch to the bottom of my pelvis. When I eat the pain gets worse I feel it’s because the pouch starts moving and pulling on the inside. No one is willing to go in through my bottom and cut loose the scar tissue. I’m only in my fifties and if I weren’t literally disabled by this I’m in perfect health yet I’m forced to live like an invalid. I survive on pain medicine that barely controls the pain. The next step is a pain pump. The thought of living out my life totally dependent on the care from another person, confined to my home causes me crushing sadness. Is there anyone, anything out there that can help me?
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