Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for the ‘Encopresis’ Category

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I’ve Done All But One. You?

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Tween Girl Crazies

My worst nightmare has come true……  encopresis trouble along with heavy periods along with a 10 year old girl who is simply not yet capable of cleaning herself after pooping herself.  Poop AND BLOOD encrusted pubic hair, yay.

She’s ten and a half.  She’s on period #2 now.  First one was just three days and yup– it was right about a month ago.  This one?  Well, we bought the pads I haven’t bought myself in years— the extra long ones.  (I get 1-2 periods a year and they’re light!) But much of this period she’s in pullups not panties.  Because….. enco.  We were going to go out today (school doesn’t start till next week) but since she’s filled her pullup twice already this morning, home we stay.

The things I don’t share freely on facebook.

I’m in Nursing School!

Yeah, no, not really.  I have ZERO spare money and ZERO spare time, plus a master’s in education I’m not even using.

I just mean that in the past month, I’ve learned about appendicostomies, cecostomies, exudate, fibrin, and all sorts of fun stuff!

Wilma had her cecostomy on January 16th, a month ago.  Technically, an appendicostomy— though she has an AMT mini one button at her appendix instead of a tube in her belly button. Don’t ask me how the tube goes through the appendix to the colon or why—- I’m not on THAT semester yet.  What I DO know is that after the first few flushes and first few tweaks of recipes (some kids need glycerin, some don’t…. some need golytely, some don’t…. some need a lot more saline than others….. sometimes you feel like a nut, sometimes you don’t)…… every flush started going beautifully. With the flush solution, she feels a bit of an urge—–  after the first flush (every flush is at least two flushes— one with glycerin and then one without)– -she often fidgets— wow!  So after the glycerin/saline mix is when I have her sit on the toilet.  Whammo.  No more poop for two days.  Perfectly clean underwear at school.  What goes in the toilet….. GETS FLUSHED DOWN THE TOILET!  In the final year before cecostomy, I couldn’t flush her stuff down the toilet— -whatever I enema-ed out of her into the toilet had to be removed and thrown out.  Megacolon.  So the point of this is to heal her megacolon— -if her stuff isn’t thick enough to clog the toilet, we’re on the right track.  The other point of this is to keep her clean at school and only pooping at home since she never has an urge (except right after a flush apparently!)—- and we’re on the right track there too.

I could write pages about how difficult it was to track down a dme company who would provide gravity bags, connector tubes, extra buttons…… on Wilma’s insurance for this type of surgery.  I won’t.  You’re welcome.  I could also write pages about how insurance won’t cover glycerin (don’t worry, it’s inexpensive), and how a case of saline is heavy and cannot be delivered— I must go pick it up (from the hospital, so I can pop it in a wheelchair— once a month I get to WHEEL a case of saline out of the hospital pharmacy… wheee!).  I won’t do that either.

What’s unusual and a little fun is that her healing is quite unusual.  For the first couple of weeks after surgery, she had stitches.  I couldn’t move the button.  I could clean around it, but couldn’t rotate it to see the hole underneath.  When we went back to the hospital to get the stitches out, it was noted that one stitch was gone (I had no idea even though I was cleaning it daily) and the button and other stitches had tugged the skin in the wrong direction just enough that the appendix dropped a bit and now she’s got a nice big bloody raw crater under the button.  That’s going to be some scar.  Anyhoo….. now I rotate the button five times a day, cleaning in the crater, picking the exudate and fibrin out with little picker thingies, drying well, packing the crater with gauze, and gauzing around the whole button.  ok, not five times a day— on a school day the school nurse does it once a day.  ok, not even four times a day— I do it before school, after school, and before bed—  I just don’t have it in me to force the issue one more time.  Nope, insurance doesn’t cover enough gauze.  Yes, I’m using a ton every day.  No, the hospital refuses to give us enough.  Whatever, that’s inexpensive too.  It’s healing very slowly— I had no idea how long an open raw bloody wound could just stay open and packed with gauze—  what’s fun is the exudate and fibrin—- it LOOKS like infection— it’s fascinating to remove the yellow goo a million times a day, show the nurse at every appointment and have her tell me that’s how we WANT it to look and it’s NOT infected.  Every now and then Wilma will peek at the gauze and be totally grossed out.  Usually she lies on her bed with the ipad in front of her face and I get the fun job. The hospital had us coming back twice a week, then once a week, and yesterday we were finally bumped to every two weeks.  hooray!  So if I don’t post here a lot, I’m busy packing wounds with gauze, running glycerin and saline through a colon, checking output against the bristol scale, and… oh by the way, still doing a bit of direct sales (and a bit of babysitting too, because my friend needed me and hey– it’s fun!).

Today for the first time since surgery a month ago, she couldn’t make it through the whole day at school.  Stomach pain.  A typical kid would sit on the toilet and poop.  Her poops really don’t come anymore at all without a rectal enema or a flush.  And who knows if it was an actual urge to poop (doubtful) or just tummy pain due to all this stuff running through her colon.  I took her home and flushed her and let her nap.  She’s better now.  That will happen once in a while but otherwise we’ve been lucky—- she doesn’t have to clamp for 10-15 minutes during the flush due to cramps, she doesn’t leak outside of flush time (I mean poop wise— she DEFINITELY leaks yellow gunk from the crater), and the wound healing is going okay.

On The Road To Cecostomy?

On the way to probable cecostomy our latest protocol has Wilma leaking like a faucet. My 9 year old is back in pullups and I go into public bathroom stalls with her to see if she needs to be changed. I carry adult size pullups and wipes in my purse. I just wanted to share here and say….. argh! Thanks. That’s all.

Nervous and excited about the possibility of cecostomy.  On the one hand, she will likely ONLY poop in the evening– in a toilet— during the time we run the flush through the tubing.  On the other hand, it’s surgery— it’s more drastic, and it might be difficult to get used to the lifestyle changes needed (an hour a day of sitting on the toilet, dealing with the tube….. oy.

During this protocol (NIGHTLY ENEMAS— EVERY friggin night….), the GI specialist is out of town.  For a month.  Out of the country.  Yeah, fun times.

Another Poop Success

my 9 year old enco/megacolon gal felt an impending bowel movement coming! “I have a poop stuck in my butt” made me happy. It went in the toilet, y’all! Second time in 2 months. I still think we’re leaning towards cecostomy at this point, but I still take pleasure in knowing that 2 poops in the past 2 months got past her lack of RAIR and anal manometry doesn’t show the whole picture. Woot!

It Wasn’t Poop Time!

I caught my 9 year old Wilma FIDGETING (doing a poop dance)—- she NEVER EVER does that— her only toilet poops are scheduled (always happening after dinner when I TELL her to go) or enema-ed (if she doesn’t poop after dinner I HELP her poop after dinner). This one was enormous enough (thanks megacolon) that her lack of RAIR (failed two anal manometries) somehow picked this one up— she had to poop! It wasn’t even dinner time yet!  Did she register that? No— she still got a little in the underwear but I told her to run to the toilet and get the rest out and whammmmo! Go girlie! woot!

Apparently there is SOME nerve ending power there— it just has to be SUCH a massive bowel movement that it would explode the colon of almost anyone else for her to feel the urge.

Here’s a post I’m not sharing to all of my facebook friends.  If you’re following this blog you either know me super well and I’ve invited you here (and you’re good with poop posts), or you don’t know me at all because we’re anonymous here. 🙂

I’m pooped

Wilma failed her second anal manometry today.  This is after spinal MRI, Four xrays, countless cleanouts, countless cases of enemas, daily probiotics, daily fiber supplements, daily colace, and a partridge in a pear tree.

Basically we can clean out her colon (at least the bottom part right at the rectum with enemas) but we can’t KEEP it cleaned out and there is nothing we can do to clean out the top part of her intestines—– so we can get the encopresis under control if her megacolon is so out of control that she poops on command on a toilet once a day because it’s “poop time” (but has NO RAIR) (RAIR is the anal reflex that can be measured by manometry—– she failed her second manometry today— think of your knee getting hit by the reflex hammer and your leg automatically moves—– when anything is in her rectum, her anal reflex does nothing).
OR we can fix the megacolon by either cecostomy or perhaps going back to top down miralax type methods which will put her back in pullups and diahhrea 10-17 times a day. As a 9 year old, going back to pullups might be medically a good idea, but psychologically TERRIBLE. The manometry doc likes the idea of fixing the megacolon. The psychologist likes the idea of leaving the megacolon as is and keeping her with no RAIR and never knowing a poop is coming. (fine as long as she’s so regular that she NEVER poops other than poop time and NEVER gets sick with diahhrea—– every time she gets diahhrea she’s back in pullups and all bets are off—- we want her to go into adulthood using pullups every time she poops off schedule?)  The GI doc might be able to talked into cecostomy. I’ll keep you posted.
googling cecostomy and it doesn’t seem terrible but requires an hour on the toilet every night while the saline runs through. Wilma will enjoy all that ipad time— lol.

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