Post by dolphin on Aug 27, 2017 11:53:58 GMT -8
Hi everyone,
Parent here of a 6 year old with damage to the conus medullaris. This manifests a lot like cauda equina syndrome I think from my reading. We are using intermittent catheterisation and oxybutynin to manage bladder, but bowel is still difficult, we are still not as free as we want to be starting school, and we have not been able to fully implement the advice of our urologist in constructing a bowel program. It seems to me she has a version of LMN/flaccid bowel. I would appreciate any suggestions you might have.
Our current approach is senna, as prescribed by my daughter's urologist, in the evening, to keep the stool from drying up into hard balls and to keep it coming. She says it should be very soft. If we don't use this the stool just does not come. And we use manual evacuation with lubricated gloved fingers. On good days this routine is before and after breakfast. On the worst days it is a series of unanticipated events throughout the day. So sometimes we must use diapers.
In addition to this we have tried water enema with limited success. Our urologist informs us we should be doing a high rectal enema by inserting something like this www.penninehealthcare.co.uk/medical-devices/gastroenterology/rectal-catheters-rectal-tubes/rectal-catheters-tubes/ (size 28 or 30 Fr she specified) at least 20cm up. I have connected this tube up to an enema bag and tried it many times but I can never get it up very far, going slowly, allowing water to flow along the way, but it even causes discomfort before I can get it very far. Sometimes we get something; often nothing but water comes out. I have used as much as 700ml, though it is difficult to estimate the amount of water that escapes during the procedure (despite trying to hold the passage closed... My daughter cannot help with that part as she cannot feel anything in the area). Any suggestions? Is this the right thing to do? What could I be doing wrong?
I have also read a lot on this forum about peristeen. Unfortunately it is not even available in this country and, given the very low spending power of our currency it looks a very expensive prospect. Those of you who pay/paid for it, what would be your average yearly expense in local currency accounting for economies like part reuse? I understand it is common to reuse the catheters 8-10 times.
Nonetheless we may yet resort to it except that first I plan to try the "poor man's" version:
I am ordering the parts and they should arrive after the local two week holiday. Does anyone have experience with using this balloon/Foley method?
Thank you in advance and I'd like to express how valuable this forum is to me and feeling already part of this community.
