Thank you Colleen for the reply.
I am trying to find a multidisciplinary hospital to help me with this.

Currently I am lacking a plan of care, I think because of the uncoordinated specialists all minimizing their risks but no one helping to manage my risk. Also part of the problem I think is that the lower motor neurogenic bowel problems are maybe less common, and I don't think there's anyone in my region that actually has experience with this to advise me what to do and how to go about it.

I'm networking around to connect with some hospitals and clinics that appear to potentially be able to advise me, and/or at least have a telehealth appointment to discuss it further.

I have a referral to Mayo now from the local spinal cord injury clinic doctor for the neurogenic bowel + neurogenic bladder management. But even Mayo seems to be confused and I keep getting bounced from one department to the other, each individually missing the medical need which is really systemic and requires a systemic care plan.

I dread being rejected again from Mayo, so I'm now trying to figure out what to say to the appointment people when I call so they are less confused.

Seems like I'll have more luck if I pitch to the GI department with the solution that I think I need without actually getting into the weeds of all the systemic pieces that show you why this is the help I need and I really need help. But if I don't substantiate the medical need clearly, then I'll be rejected. But if I explain the systemic stuff, they'll bounce me over to neurology departments, Urology departments, and GI evaluation - but they also won't see the medical need because individually, there's not an urgent problem.

The urgent problem is that my unmanaged GI problem has created a serious Urology risk that I keep ending up in the hospital for. It's so scary to think I could be dead before I get some help with this.

I really need help and can't figure out how to get it - yet.
I appreciate having this outlet to vent and connect with others trying to find solutions to their problems. Thanks.