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

Learning About SB: Getting Things Out - Part 2

Bladder and bowel problems. They kind of come together, makes sense, since the nerves that go to the bowels are the same level. Here is a picture of how the digestive system get their nerve supply. The nerves to the bowel, the small and large intestine, rectum and anus (internal and external sphincters and canal) are affected.
What does this mean specifically? First we need to review how the bowels work. The intestines are muscles that contract and relax so that the ummm waste products (i.e. poop) travels down to the rectum. Again here we talk about sphincters (those doors that open and close depending on the messages they get). These sphincters send and receive messages from the brain depending on what is outside their door. When the internal sphincter senses poop in the rectum it opens and the external sphincter controls when we (potty trained) poop.

I can try to be polite, but hey, we are talking poop here. I am a mom, poop is a very important part of my everyday world. Get over it.

So now that we have that over with, what about kids with spina bifida? The incontinence (no control over bladder/bowels) problem is not an issue for us at the moment – we get to wait a few years for that. With poor or little control of the sphincters, well, remember my door analogy. If the door just pops open sometimes, the room empties.

Nickolas is a baby and in diapers anyways. So we aren’t really worried about when he poops, it is if he poops. That brings us to the next part of how spina bifida affects the bowels. Nerve damage means that the brain and the body don`t communicate, the brain doesn`t realize that the rectum is full and the door doesn`t open when there is a `knock at the door’ (if you get what I mean).

Muscles are the last part of this picture. Muscles are what you use to push poop out, but with spina bifida also comes with weak stomach and pelvic muscles. So constipation is a problem. Poop just sits there, can`t move and becomes hard when water is reabsorbed by the body and then just gets harder to come out. An article I just read described constipation and spina bifida as increased colonic transit time. Like the Go Train is going to be late!

So what do you do to help these issues getting things out? The first step is fluid and diet. Prune was Nickolas’ second food, and luckily he likes it – because he gets it every day. Also increasing fibre. If that doesn’t work then you look at medications as well as massaging belly, bum to help things along.

I could actually go on and on about these issues. But I’m going to stop here. Once potty training is started there are a lot more toilet issues, but we aren’t there and so I’m not going any farther. I think little learning module has come very close to TMI (too much information). But at the same time, as an parent of a child going through this, there isn’t too much information.

Sorry I don`t have many pictures for this little learning post. You probably wouldn`t want any, and I did find pictures that show exactly what I was talking about.

The picture came from http://img136.imageshack.us/i/bigdigestivesystem12176.jpg/ and most of this information I got from http://www.mydr.com.au/babies-pregnancy/continence-in-spina-bifida-bladder-and-bowel and http://www.medscape.com/viewarticle/569470_7 and http://spinabifida.org/sb-info/bowel-continence