Tuesday, November 22, 2011

My little soldier

(If you're tired of the subject of poop already, you should probably stop reading my blog, for it is my life right now)

I knew Ian was tough, but now he's superhero status.  Had to get the dr.'s finger up the bum and blood drawn on the same visit.  Two nurses were brought in to make sure his arm didn't move and i had to use my body weight to lay over the top his legs and keep his opposite shoulder down.  I wasn't thinking and this was the only part of the visit that i hadn't prepared him for, so i had to give him a brief explanation right before they came in.  He did great, face got red and his little heartbeat was pounding super fast, but he didn't cry or even give the slightest protest.  They suggested to him to look at me which he did for about a second then turned to watch the blood being pulled out of his arm.  Such a trooper!  The nurse was showing him the viles and told him he could hold them if he wanted, so of course i said excitedly Let's take a picture so daddy and joey can see your blood!  He was fascinated by it and maybe looked a little concerned too cause the nurse made sure to assure him that his body would make more.
Anyway the tests were being done to rule out any rare diseases or thyroid issues that could be contributing to the encopresis.  The doctor called me Friday to say he tested negative for all of them, except we are still waiting for the results of the Celiac lab.
Relinquishing anxiety has been a full-time battle for me lately.  I'm much more at peace today but that wasn't the case a couple days ago.  I've been a little obsessed with researching everything i can think of to find out what has worked and what hasn't for families with encopresis.  Saturday was a bad day.  Still feeling sick, tired, and overwhelmed, when mom showed up at the house, i kinda broke down and just couldn't keep it together.  I had just been reading too many stories of moms who had tried everything and their kids weren't any better.  It seems like so many are just trying to control the situation, being super paranoid about diet, precisely calculating when to add more laxatives, stool softeners, and agonizing over when to cut back on them.  No concrete solutions just bandaids to cover up the problem.  Maybe these are the exceptions and the people that have had success with Miralax alone just don't write about their experiences on the internet, but i literally only found two examples of people who said it actually solved the issue for them long term. Anyway, my mom told me what i knew already to be true, that information is good and all, but sometimes too much of it can be pretty dang depressing.  Hope was hard to find that day.  I was still pretty bummed out that night at church, trying to not let it consume me, getting teary-eyed again for who knows how many times that day.  Thankfully we had the Monster X show to look forward to that night.  Mom scored some tickets for free (THANKS MOM!) and we were able to leave O at home with her so we could go have some fun with the boys.  It was so needed, it's pretty fun to be a family of 4 for a night, we actually had enough hands for once!  It was a blast, boys were up SUPER late but slept in til almost 9 the next day, and have been playing monster trucks ever since.  We even had to bring out their fork lift today and use a shoelace for a chain to pull up the rolled over trucks, cause that's what the real ones do ya know.
So back to Ian's appt., the doc said pretty much what i thought he would, that after we rule out diseases, we get an X-ray to check out his colon, then get on Miralax to get him cleaned out.  Here's the rub though.  I don't get it.  I understand giving him runny poops and softening them up to try and clear it out.  But if his colon is indeed stretched out and it takes months, sometimes even a year for it to shrink back down to its normal size, how does that help him learn to push poop out on the toilet if he never did it before all of this started happening?  Wouldn't having more accidents because of the laxative just make him want to hold even more? I had these questions already and a couple weeks ago i came across someone saying the best money they had ever spent was on a manual called Soiling Solutions.  They too had tried everything else and were desperate, and after finding success with the protocol, they were highly recommending it others on the forum.  Being the skeptic that i am, i of course had something new to research, and still have yet to find one negative review of the program.  It's basically a schedule of specifically timed suppositories and enemas for one hour a day, until the child is able to produce a bowel movement without assistance.  I haven't gotten to the specifics of it yet, i just glanced at the visual aid for the treatment hour or "hour of power" :-) and most of the time is spent just hanging out relaxing, the actual "sit" times are only 2-3 minutes long.  So basically, you spend at least 10 minutes or more just chillin in the bathroom, then the child sits for only a couple minutes, then you hang out some more, then the child sits again for only a couple minutes.  If no poop by then, the parent inserts a suppository, waiting time again for 10 minutes or more, followed by another short sit.  More hanging time, then finally the 4th and final sit.  If nothing has happened by this point, then the enema is administered and a bowel movement is guaranteed.  The goal being that the time on the toilet is associated with successful poops instead of long sitting times that feel like forever to a child or even like punishment, and it just produces a sense of failure.  The idea is that the bowel movement is reward enough for the child and they will feel a sense of relief and excitement over the end result, despite them most likely resisting the whole process to begin with.  Eventually the child should be able to achieve a bowel movement without needing the enema, then without the suppository, then finally real celebration happens when the child initiates going to the bathroom on their own.  An hour a day may seem like a chore to some, but compared to a whole day of worrying when he's going to have an accident, having to give him baths either to clean him up or to get his digestive track working, sitting on the toilet and waiting for poop without success, one scheduled hour a day sounds awesome to me.  The wonderful part about it is that it guarantees the colon being emptied for a 24 hour period.  There's no worrying about having accidents.  The body's not confused by mixed signals caused by oral laxatives that take effect half a day later.  90% of children on this program stop soiling by two weeks into it!  That's just amazing to me.  I really wanted to believe in this but there were a couple things holding me back.  One, the price.  89 bucks for a manual? Really?  Two, it's not well known.  If you look up encopresis, you don't find websites telling you to order up Soiling Solutions to fix your problem.  Well, in spite of it, my gut was telling me it was necessary so a week after finding out about it, i ordered it.  The more i read it, the more i have confidence in the program.  Maybe i won't even need it, but the information i'm getting is invaluable, and i have to do something to keep me busy(other than pray of course) until these slow doctors can get back to me and we can proceed.
The problem is, guess what, our pediatrician had never even heard of it.  What?!  I cannot find A SINGLE person who this has not worked for (believe me i've scoured) and our doctor doesn't even know what it is?  I guess enemas used to be pretty commonly used in homes but over the last few decades cultural stigmas and fears have caused a shift in the medical community and now the standard recommendation is the "soft approach" which involves oral laxatives, diet, fiber, scheduled sit times of 10-15 minutes after each meal, reward charts, etc. etc.  The crazy thing is that this approach works in up to 60% of cases within a YEAR, but only 80% after 8 years!  Those just really aren't good enough odds for me.  I didn't want to tell the doctor quite yet that i had already purchased the "Clean Kid Manual" because i hadn't read it yet and really just wanted to feel him out by throwing the idea out there.  And not only did he not know what it was, but when i asked his opinion of whether or not he thought it would be a good idea to do an enema, he was not at all for it.  His reason being that the uncomfortableness Ian felt from the rectal exam would be close to what he would have to experience from receiving an enema.  However, i'm leaning toward the opinion that being half naked in a cold room while a stranger's fat finger probes inside is quite worse than a skinny little tube being inserted by a loving parent in the comfort and warmth of home.  There are basically two "camps" regarding treatment for this issue.  The top down approach which claims that administering everything through the mouth is the gentlest, least traumatic for the child, and the bottoms up approach, which claims that emptying the bowels is the most effective way to retrain the brain to overcome the holding instinct that has by now been habitually ingrained and learn to use the muscles needed to push effectively.  I plan on using both.  If we do indeed find out that Ian is backed up and he needs laxatives to clean him out, then i'll do whatever need be to get all that junk out of him, but i'm not going to keep him on it for six months to a year just hoping that one day he'll decide to go on the toilet and it'll just happen to be at the right time that the laxatives have made their way through his system.  I just don't think that suppositories and enemas are that traumatic for a child if done the right way.  What i do think is traumatic is having to go through life with poop in your pants and feeling alienated because your parents never had the courage to do the dirty work required to fix the problem.  And there's a pretty good chance Ian's colon is backed up and stretched out.  He's got all the symptoms which i won't list here for lack of time, but it can take up to a year for some kids depending on their severity for their colon to return to its normal size.
I think a large part of my stress was me agonizing over which route to take for treatment.  What do i do when our doctor tells us to do one thing but i'm reading something totally different and my gut is telling me to try something else?  Since this condition affects up to i think only 3% of children, i can totally understand that doctors don't have the time to look into it closely and that they i guess have to be on the same page as other doctors so they're not seen as being a radical, but i'm hoping that he can at least be open to it and not take offense that i'm looking elsewhere for answers.  Praying for wisdom everyday, and mostly that this will end as quickly as the Lord is willing.
My little baby deserves this, to live to the fullest.  Thanks to everyone praying, that is what is needed most.

saying, "No i love Youuuuuuu."


  1. Hi, I know this is nearly a year later and I am a stranger, but did you end up using soiling solutions? My four year old has this issue, made worse by chemo. We use miralax regularly, but like you, I wonder how it treats the problem.


  2. What is the protocol recommended by soiling solutions?