26 February 2016

Pelvic Therapy for Rectal Prolapse

"Is Bennett being followed by GI?  I think we need to get to the bottom of this - four surgeries for rectal prolapse when he's only six is a lot.

Those are the words I heard during our recent hospitalization from one of the concerned on-call Pediatric Surgeon doctors who cared for Bennett.  These words, as well as a follow-up conversation she had with our beloved Pediatric Surgeon prompted a new shift towards a more active look in to Bennett's rectal prolapse issues by his Surgeon, CF doctors and by myself.  

We have been highly concerned about Bennett's issues with rectal prolapse for some time but have not fully understood it.  It has been explained to us several times that rectal prolapse happens in CF and that surgery helps.  But that's about all we have know.  What I didn't know about until after this surgery is there is actually a therapy that can help with these kinds of issues.  It's called, "Pelvic Therapy."

So, on Thursday, Bennett had his first "Pelvic Therapy" appointment with a physical therapist who specializes in prolapse issues of the bladder and rectum.

This is Bennett's drawing he did at Pelvic Therapy.  The red line illustrates how the location of the rectum.  The yellow highlighter demonstrates how the food (apples, here, can't you tell?) goes from the mouth to the stomach to the bowels and in to the potty.
Things started out a little rough.  Bennett didn't want to go.  He has become anxious about going to new doctors appointments.  I don't blame him.  It's not fun to be poked and prodded every time he goes to the doctor.  Bennett was afraid this appointment was going to be either scary or boring.  He was really relieved it was neither.

The Physical Therapist began by showing Bennett some pictures of the anal sphincter muscles and explaining how "the bottom" works by opening and closing.

Next, the Physical Therapist gave Bennett a pen and a clipboard with paper.  She asked him to draw himself with a black pen.  Then, with a red pen, she asked him to draw a line near the stick-man's bottom to indicate muscles we would be working on in Pelvic Therapy.  

Together, the Physical Therapist and Bennett talked about how food moves through the body. Bennett loved it and was totally engaged.  I was impressed with the Physical Therapist's well-planned exercises to teach Bennett about his body.  

Then, the Physical Therapist asked Bennett to get up on the table and pull his pants down so she could examine him visually.  This is when he reached his hand out for mine.  I loved knowing how I could support him.  The Physical Therapist asked Bennett to show her on the table how he opens and closes his anal sphincter muscles.  

What was really interesting was when she said, "close," he closed the muscles.  When she said, "open," his anal sphincter muscles closed.

She said, "this is the cause of rectal prolapse.  His body has gotten confused on how to use its muscles correctly.  His body is trying to push out the poop but his muscles are closing.  This is how the rectum/bowel begins to protrude, because he is continuing to push even though his muscle is closed.

I couldn't believe it.  It seemed so simple and yet his body seemed confused.  We talked about why this would be.  She couldn't identify the cause but she explained at some point his muscles/brain got confused.  It could have been when he had C.Diff years ago.  But we really don't know.

Fortunately, the Physical Therapist reassured me that this was very much something pelvic floor therapy could address.

After we were done, the Physical Therapist gave Bennett a balloon and asked him to keep the "poop" (air) inside with his "bottom muscles" (his fingers).  Then, she made a "toilet" with her hands and asked him to get the poop out.  Bennett loved this, just opening his grip on the balloon and watching the balloon fly around the room.  It was so clear he understood that his muscles need to learn how to do that too.

The Physical Therapist explained that at our next appointment, she would like to have Bennett participate in bio-feedback.  I don't know much about what Pelvic Therapy Bio-Feedback involves except that it includes placing these little stickers near the anal sphincter muscles to help the body relearn how to open and close at the right time.  To prepare Bennett, the Physical Therapist gave Bennett a few stickers to touch and play with.  She reassured him they wouldn't hurt.  "Will they hurt when they come off?" he asked.  "No," she gently replied. 

I was so thankful for such a good appointment.  The Physical Therapist did a beautiful job teaching Bennett about his body and reassuring me that therapy may be our answer.  I am really sad that we didn't know about this therapy before now.  Bennett is just now able to take advantage of such therapy as it does take cognitive work to make it happen.  Before now, he has likely been too young. But, I wonder if we could have started it a year ago, we could have prevented this latest surgery?  It's a moot point now but at least we will have this therapy going forward in hopes we can prevent any further issues.

Bennett and I will return for pelvic therapy after Spring Break.  We will continue to go somewhere between 4-12 more times.

In addition to attending pelvic therapy, Bennett was evaluated and ruled out for Celiac disease and infection in his stool.

Everybody wants to know why Bennett has struggled with chronic rectal prolapse.  But, his CF GI doctor thinks it's "just because of cystic fibrosis."  She has explained some people with CF struggle with it for unclear reasons.

As the Pediatric Surgeon who prompted a further look in to this issue explained, "Bennett may just be a rarity.  But it's worth getting to the bottom of this if we can."  I am thankful for her prompting as the more causes we can rule out, the more hope we have to prevent this issue ever being a problem in the future. 

No comments :

Post a Comment

We love to hear from you! Please leave your comment below!

Note: Only a member of this blog may post a comment.