I made these 'learning posts' in June for Spina Bifida Awareness month, but thought I'd make a stand-alone blog so that if anyone is interested, all of the information is here. And I can add as I learn more about spina bifida as well!

Spina Bifida is the most common birth defect in North America. My son Nickolas was born November 13, 2009 with spina bifida and I have chronicalled our journey here, in my personal blog.

I hope you enjoy and learn something!


The information from this blog has been collected by myself to share what I have learned. It should in no way replace medical recommendations or consultation. This is for educational and information purposes only.

Start by picking a topic below:

Saturday, April 20, 2013

Sharing my take on Bowel Continence

*Updated with some parent resources*


Trying to become socially continent is a journey and a challenge. There is no right answer, there is just a lot of trial and error as well as a progression through various steps. This post isn't about constipation - that would take a whole different post. It isn't about consistency of poop, but about consistency in timing.

I call the bowel a stubborn teenager that yells "I won't do it! You can't make me!" And folds it's arms and stomps its feet until you wear it down but doing the same thing over and over again.

So anything that you doesn't happen over night. To say that something was a fail means that you tried it for weeks before saying that it didn't work.

My knowledge comes from my own experience and what I have learned over the last couple of years. And it is by no means extensive.

We progress through the poop steps of least invasive to most invasive.
There is wide ranges to spina bifida and neurogenic bowel, so there would be wide ranges to the ability to become socially continent.
  • Diet - I had a great dried fruit combo for baby food that kept Nick regular when he was a baby, but this was more about keeping him from getting constipated than getting him clean. Because as a baby diapers is expected. 
    • Staying away from cows milk is also a biggy in our house. For milk we use almond milk or goats milk. Goats milk is easier to digest than cows milk and less constipating.
  • Oral laxative - PEG flakes (Restoralax) we give every morning, in oatmeal, it is quick and easy, doesn't have a bad taste. We can adjust it up and down depending on what we need. Right now we are at 1tsp every morning (but have gone up to 3Tbsp when we really need it). And as I've heard there isn't a maximum dose.
    • We have tried some other medications like lactulose (didn't like it, didn't work, it was a liquid and he needed to take it too often for it work into our lifestyle)
    • Senna we haven't tried. I've heard very negative things about senna and want to stay away from it for now. I've heard that it is habit forming, which doesn't really make sense because the neurogenic bowels need the habit.
    • Omega-3 and probiotics, we used this as a supplement for a while and it made a huge difference, but we still needed the restoralax. We are on a break right now, but I find it makes Nick smell like fish for a while. Will probably start it again soon
  • Stimulation. You are stimulating the muscles to work. This can happen by gently pressing around the anus
  • Suppositories. Again medication. It seems like this has a couple of steps
    • Glycerin is the first step, but we found it didn't do anything to help.
    • Ducolax is a medicated suppository, the medication in it also stimulates the bowel to move. This has been great for preventing or keeping him from getting constipated, and when we do it every day or every other day we get things moving, but I found he is leaking all the next day. So it just isn't working for getting him clean.
  • Enema. This is using liquid (with or without something added to it) to clean out the colon more completely than the suppositories will do. The more comes out at one time with the enema the less that can come during the day. This is a retrograde enema - so it works in the colon from the bottom (literally) up.
    • There are different types of enemas.
    • A regular tip enema, but I found that using this (like a fleet enema) doesn't work. You have to have the muscle control to tighten around the tip, which Nick does not have, so the fluid doesn't stay in, which is the whole point. And just squirts right back out. So this hasn't worked for us.
    • A cone enema, is the step we are currently on. It is typically used for cleaning out colostomies. And it is cone shaped to fit into the hole of the colostomy, but we are using it for a different reason. The cone shape means that we can create a stopper without the muscle control. So the fluid that goes in, stays in to work, and when the fluid comes out, so does all of the poop in the colon.

    • A catheter type of enema - this is newer and more expensive. But it works to do the same things as the cone. Instead of the cone shape it is a tube with a balloon at the end to keep the tube in place and keep the water from coming out.
 
    • Once all of the fluid has been put in, the tube or cone or whatever comes out. This way the bowel is clean as far up as the fluid can go.
  • Surgery. This is the final step. There are 2 different types of surgeries, it takes the enema solution and starts at the top of the colon, (called an antegrade enema) around where the appendix is, and cleans the colon from that point and down. It seems to me to be the most effective way, but also the most invasive - because it involves surgery.


    • MACE
    • What the MACE stands for is Malone (the guy who discovered it in the 80's) Antegrate Continence Enema. So they take the appendix (which is already attached to the top of the colon) and make it so that it connects to the belly button, so that a tube can go into the colon and put the enema solution from the top and clean out the entire colon. It is a laproscopic surgery, it will not interfere with the shunt tip, he says there is a quick recovery from it. On the outside the belly button will just look like an inny (this is how our urologist explained it - I tried to find some pictures to see what the results actually looks like, but I can't fine one). There is something about a flap or something that comes down - so that things don't back up the wrong way.
You need to have an appendix to have this as an option.
This is a chapter in a textbook. It has pictures
http://www.biliaryatresia.org/reference/Malone-procedure.pdf

A helpful parent information package is available http://www.urology.ucsf.edu/sites/urology.ucsf.edu/files/uploaded-files/basic-page/ace_malone_2.pdf

    • Ceacostomy
    • The other kind of surgery isn't really surgery. It is a ceacostomy button. It is when they take a tube, and through radiology guided the poke the tube from the belly into the colon. Then the tube stays in, and on the outside is a button that stays closed when you don't need it. This is just like a g-tube. If it not needed it can be removed.


The urologist was not very positive about this (but he is a surgeon that does the MACE, so I'm not surprised).
The button seems less invasive, but if we are putting something foreign into the body it can get infective, whereas the MACE is more invasive but less likely to get infected or have the body 'reject' it.

There is another parent information package available
http://www.hamiltonhealthsciences.ca/documents/Patient%20Education/CecostomyTubePORTRAIT-lw.pdf


This is so far the extent of my research to share. Other sites I found useful are:

http://www.mededmasters.com/anterograde-continence-enema-ace-procedure.html
http://addberbe.hu/templates/ja_zeolite/images/cecostomy-picture
http://www.docstoc.com/docs/93351272/Information-for-Malone-MACE-Appendicostomy

3 comments:

  1. I and my daughter suffers from spina bifida. We are living in Turkey.
    We also have problems in orthopedic and urologic.
    I wish you all heathful. We also have a forum on our website.
    http://www.spinabifidaturkey.com

    ReplyDelete
  2. Hi there,

    My name is Beth, i am 18 and i was born with spina bifida. i have had an ACE since i was 8 years old. 10 years ago!! they have changed my life and they work so well. i have been a patient at Great Ormond Street my entire life and the doctors and specialists are absloutely amazing!! they have really supported me through everything.
    for my ACE i use fossfate and saline which i mix together. it only takes an hour to work which is great for me. growing up i have used ever so many laxatives and methods but the ACE is by far the best!!

    In the future when i i have children, the ACE will stretch.. i was told that i would have a catheter inserted into the ACE and it would stay there throughout my pregnancy to prevetnt the ACE from breakng and kinking as the baby grows bigger.
    I think an ACE is the best way forward for bowel incontinence because it is very effective...rather than using enemas or taking laxatives. also the ACE is very discrete as it is in the naval. when i go for a check up the nurses and doctors cannot even see i have an ACE atall.

    im happy to share my experiences with you because i have had an ACE for nearly 11 years now but before my ACE it was very tough. there wasnt anything effective and long term.
    ACE's are very specialised but they are becoming more common as they are so effective. I had my ACE at 8, which is very young but it all depends on the family and the child. the child needs to beable to understand the procedure as how it will effect them. at first...using the ACE was difficult. but as i grew older i learnt to understand my body. Diet plays a HUGE!!! part in how the ACE will work so keep an eye on what you are eating as it will really help.

    i hope i have helped in some way. but i can really relate to you.

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  3. I agree diet plays a huge part. For those with Spina Bifida and suffering from Fecal incontinence, I suggest avoiding foods that really make the condition worse such as chicken, milk, soda, refined sugar, canned fruit, chocolate and other things.

    ReplyDelete