I might have figured something out---partially

Since coming home after the UTI she has not been urinating AT ALL on her own...She has probably had 3 wet diapers in 3 or 4 weeks.  Everything else I have had to cath.

During that hospitalization we changed her "pooping" medicine from lactulose to milk of magnesia.  It has been terrible.  We have been doing the maximum daily dose of milk of magnesia and it does NOTHING.

The other day (it had been several days with no bowel movement) I took it up a notch and did an enema and a full dose of miralax in addition to her milk of magnesia, and daily supposity.  She had results and wah-lah...her heart-rate came down and no grinding teeth.

But then the next day she had very little urine output...I think because enemas (and other stool softeners/stimulants) draw the water into the bowels to help you go.

And when she is super constipated she doesn't urinate either, which always makes me think that she has a UTI.  And then I freak because I don't want it to go to her kidneys and damage them.

So it's like this...

pooping regularly= peeing OK (with a cath)
constipated= decreased pee
do bowel cleanout= decreased pee

So we REALLY need to figure out a new bowel plan.  The lactulose (that she was on before for several years) worked really well but they think that might have been contributing to the free air in her abdomen.  She has an appt with gastroenterology on Wed, so we will come up with an updated plan then.

A week or 2 ago she had a uro-dynamic study.  It was in a procedure room just off of the operating rooms at PCMC.  I got to stay, but had to change into a hairnet and jumpsuit (that was a first for me!).  They emptied her bladder then filled her bladder with "contrast" and did a series of x-rays as her bladder filled to see how it reacted.

I will tell you haw a normal bladder should respond, then how hers responded.

When your bladder is full then the bladder spasms.  This causes the urinary sphincter to spasms and that is how you know you need to go to the bathroom.  Then you relax the sphincter and you pee.

These were their findings...She has a large bladder, but it is a safe bladder, it does not reflux back into the kidneys.  When her bladder is full it spasms (like normal), the sphincter spasms (like normal) but she cannot relax it to go pee.  So she feels like she has to go to the bathroom, but cannot.  They called it an "uncoordinated sphincter".  They do not have a reason for this to be happening.  It could be nerve damage either from the spinal surgery or ??????  They really didn't have any guesses for me.

As of now they suggested cathing her 3 or 4 times a day (up from 2) in the hopes that sometimes if you can get the bladder smaller it will start working better.  And they put her on a low dose oral antibiotic  for 6 months.  Because they said 2/3 of people that get a UTI have a  second UTI within 6 months.

I have decided to go down on her baclofen pump dose because all of her urinary problems started around the time of her spinal surgery.  But at this same time we went up on her baclofen pump dose and have gone up several times since then.

Baclofen must be weened, so we will have to lower it through several steps.  The first lowering will be this Wed.  Unfortunately it must be done at PCMC and not just at home.

Her baclofen pump is an implanted device in her abdomen that delivers a medicine called baclofen directly into her spinal fluid to help her relax her tight muscles.

I don't want her muscles to be tight, but I need to know if this is the cause of her problems, it can be a side effect of the baclofen.

So far we have been able to cath her, but if it comes to a point that we are unable to, then they surgically make a hole above the urinary sphincter (in her stomach) and you cath through that hole instead of through the regular spot.