An Answer to Her Stinky Situation? PERISTEEN

Wearing diapers to Kindergarten is embarrassing. Most six year old girls have been out of them for years, but that has not been an option for Adria. And it bothers her.

Just last week, she came home from school telling me a story about how her skirt had gotten loose on the playground and was falling down, revealing her diaper. Adria said one of her friends was chasing her around, trying to grab it and that was not nice! She did not cry about it, but I could tell she did not like it. (Neither did I!)

And then there's her little sister Johanna, who just turned three but has been out of diapers for about six months now. Every day, Jo-Jo gets to put on her Disney princess or Tinkerbell panties, and Adria must wear her "boring diapers" as she says. I think big sister is pretty jealous of little sister.

But we fear Adria's issues would be far worse if we put her in panties, even with a pad. Because of her spina bifida and the incomplete formation of the nerves in her lower spine while she was growing in Mommy's belly, Adria does not have the ability to control her bowel and bladder. In other words, her brain does not get the message when she needs to use the potty, nor can her body control "holding it" or pushing it out.

Every day around lunch time, Adria goes to her school nurse who empties her bladder with a catheter. And there are days that Adria comes home from school with stinky poo in her diaper. In spite of our best efforts to regulate this part of her life, it's an on-going struggle.

Summer 2013, I wrote about her STINKY SITUATION and how we were getting into a routine to help that. We've made progress since then, but it is so inconsistent and we are nowhere near ready to get rid of her diapers.

In June this year, Adria's urologist introduced us to a new bowel program called PERISTEEN. This was during a very FULL DAY OF DOCTOR'S VISITS at A.I. duPont Hospital for Children, so they sent us home with information to look into and decide if we'd like to try it.

What is Peristeen?

We had never heard of Peristeen before. It's a type of enema system or "bowel irrigation" that is used to "manage fecal incontinence and chronic constipation." Peristeen has actually been around in Europe for many years but has only been approved for use in the U.S. over the last two years.  Earlier this year our local children's hospital became among the few hospitals nationwide that is trained and approved to offer this system. Yeah!

In just the first few months of offering the Peristeen to other children who have bowel issues similar to Adria, there were 10 families from just that hospital who were already experiencing huge benefits from this program.

Peristeen is produced by Coloplast, the same company that supplies us with Adria's catheters for emptying her bladder. If you'd like to learn more about the program, Coloplast has an informative video. I especially like the narrator's formal English accent, as she describes such a sensitive process :)

How do we get Peristeen?

After learning about the program, we were interested in trying it for Adria. Yes, it's a bit complicated, but if it means that she can go through the day without having a poopy diaper, then it's worth it.

Unfortunately, it's not as easy as saying "Let's try it!" Because Peristeen is so new, some health insurance companies do not know how to code it and will quickly deny coverage. This happened to us. Without insurance, this program costs about $1,000 out of pocket a month!

And thus began a nearly six month battle. Fortunately, we have a great team of doctors at DuPont Hospital, and Susan Myers specifically went to bat for us. There was a lot of back and forth among us, insurance, the doctors and the supplier for Peristeen.

Finally...two weeks ago I received the call from Dr. Myers that she got our insurance to approve covering the Peristeen system!!!

YEAH! We felt like this was a huge answer to our prayers.

How do we use Peristeen?

With insurance approval, our Peristeen system soon arrived in the mail. However, before we could begin the routine, we would need official training from a medical professional.

That came this past Tuesday during our semi-annual visit to the children's hospital for the spinal dysfunction clinic. After a full morning of Adria's doctor appointments, we spent nearly two hours reviewing the procedure with Susan Myers and trying it out on Adria. (Tuesday was also Johanna's 3rd birthday...so that's not exactly how I pictured spending the day, but it was worth it to help Adria.)

Adria chilling in her wheelchair after lunch, waiting for our meeting about Peristeen

The new wing of A.I. duPont Hospital has an impressive 6-story atrium, a great new cafeteria,
and this colorful Discovery wall that changes scenes.

Without getting too disgusting with details, I'll just say... the Peristeen definitely emptied her bowels MUCH BETTER than anything we have tried before!

As we get started, we will need to use the Peristeen every night on Adria. Eventually, we may be able to reduce it to every other night.

So every night this week, my husband and I have worked together to set up the Peristeen system and do the routine with Adria. She sits on the potty for 30 minutes, being entertained by the iPhone or iPad, while her bowels empty. She has complained of some cramping and strange sensations, but overall it's going really well.

I document the nightly details in the "Bowel Emptying Diary" provided with the Peristeen kit. That's fun...

At the hospital Adria was very hesitant to try this new thing, but when Daddy said it could mean that she would be able to wear panties instead of diapers, she got excited and cooperated so well. What a trooper!

And that's what Adria wants for Christmas...her own pack of panties...that's what she told me today :)

This is a video I took at the hospital to help remember the exact instructions we received during our visit...



So...next time you have to GO #1 or #2 take a moment to give thanks for this ability. We all take it for granted, but it's not so easy a task for some people, especially many of those living with spina bifida.

If you or your child struggles with bowel management, this may be a program to strongly consider. We'll keep you posted on how it's working for Adria, but it's looking promising so far!

For now, it's just past 7:30 p.m. so I need to get off the computer and do her potty time!