NDIS has taken away my ability to go to the toilet.

In 2018, I unfortunately acquired a spinal cord injury through no fault of my own. This injury has impacted my bladder and bowel functions. While I have been fortunate to maintain bladder control without aids, my bowel function has ceased. Since 2019, I have been relying on colonic irrigation to manage my bowels, as traditional methods like high doses of senna have proven ineffective. However, in September, the NDIS decided to stop funding this therapy for me, leaving me in a difficult situation.

Without warning, I was transitioned to NDIA management due to what they deemed incorrect use of funding (paying for essential toileting needs). Now, I am left with no option but to consider getting a stoma to evacuate my bowels, a prospect I am not keen on as it involves major surgery, potential risks, and increased costs compared to my current method.

I have consulted my GP, who has been with me throughout my entire spinal cord injury journey, and he strongly disagrees with the NDIS decision. I am willing to forgo my entire NDIS plan just to secure funding for my toileting needs. I am currently awaiting the ART process, but in the meantime, I am struggling to afford the $170 cost per session for colonic irrigation. The alternative of waiting until I am seriously ill from bowel complications is not something I want to consider.

Despite having an upcoming appointment with a colorectal surgeon to discuss a stoma on January 28th, I am distressed about being pushed towards this option. I have a way to manage my bowel movements that is effective and affordable, and I am willing to give up my NDIS plan if necessary to continue this method. I have a young child and my priority is to stay healthy and alive. If there is any way to help me raise funds to maintain my current toileting routine until this issue can be addressed through the ART process, I would greatly appreciate it.