To Pee Or Not To Pee (train)

...that is the question.  Or so we thought.  Turns out we were wrong.

Julia had a follow up appointment with Dr. Hodges today, her urologist.  After the events of the weekend with  her peeing blood, passing tissue, visiting the ER, and having another UTI- we were very thankful to already have this appointment set up.  Thankful that God knew in advance that we needed to end up there today. I anticipated we would discuss the recurrent UTIs and techniques for helping her to successfully re-potty train for peeing.  Not so much.

He was much more concerned with her lingering bowel incontinence.  He wanted to do a flat panel x-ray of her abdomen to assess and then we'd talk.  So he sent us across the hall to radiology.  It turns out that despite our regimen of suppositories and miralax, Julia's colon is completely impacted and not functioning at all normally.  I was actually cautiously optimistic because she has had some success in the past week that I was hoping was positive progress.  Unfortunately, the proof is in the film and the huge mass that is her colon in the center of the screen.

Dr. Hodges said it is impossible for her to gain bladder control under these physical conditions.  We cannot even attempt to address that issue until the bowel situation is completely resolved.  And then it will involve physical therapy, biofeedback, and intense retraining regimens.  He said the diffuse thickening of the bladder that was found in her recent ultrasound is a result of the pressure in the area from her colon as well as the bladder muscle's overreaction to attempting to control urine flow.  He said the UTIs are a direct result of this process and will continue until the bowels are repaired.  So she is 100% in diapers with regular encouragement to empty as much and as frequently as possible.

So where are we headed? Dr. Hodges feels Julia definitely needs to have a cecostomy or c-tube.  The GI doc gave us two options back in September: a c-tube or bowel ressection.  His plan was to assess in December and plan a colonoscopy to actually look at the inside of her colon.  If he finds a specific section at fault, then bowel ressection with temporary colostomy would be a fix.  If it just a poor muscle tone, slow healing issue than a c-tube would give a successful, temporary fix until she healed on her own (hopefully) in a few years.  Dr. Hodges wants us to call Dr. Fortunato and get the ball rolling.  It seems the line in the sand has been redrawn.  Waiting will just prolong the healing process which is already a long, slow road. 

So what is a c-tube? Essentially it is like a feeding tube, only lower and it is used to flush, not feed.  It would allow us to flush Julia's colon from "above".  It is placed at the beginning of the large intestine.  We would flush it once a day in a 20min to one hour process which would leave her free from issues and leaking the rest of the time.  If at some point her body healed and began to function on its own again, it can be easily removed. The more I learn about it, the more I feel this is the way to go.  Dr. Hodges feels she is the ideal candidate and this is the best thing we can do for her at this point. He will see her again in February to see if we are any closer to beginning to progress out of diapers.

So I guess that next bridge might not be as far off as we thought.  Looks like we may be crossing it in the every near future. I must say I am excited about the idea of "doing" something.  So much of this process has been waiting and experimenting with little or no success. We are ready to continue in the healing direction.