Tonight is the night for us to take the next step.
In the journey of spina bifida, continence seems to have the most impact on daily life. Not mobility, not if someone is walking or not, talking or not. It's pooping and diapers and bladder issues.
Because that leads to social issues. I remember that day in the office, when I was questioned about keeping the pregnancy and hearing "diapers for life". And I thought we can handle that - and we can. But do we have to? Or can we have social continence. This means that we do things so that socially, when we are out of the bathroom, Nick won't have to wear diapers.
Which has led to me pushing (pretty early) to work on getting him clean. Starting with a potty over a year ago. And progressing through the different steps (starting from 6-9 months old)
- Diet (I had a great dried fruit combo that kept Nick regular when he was a baby), and staying away from cows milk (he still drinks almond milk or goats milk).
- Oral laxative (PEG flakes) that we put it in his oatmeal every morning, and 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)
- We have tried some other medications 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
- 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. I won't describe it, I'm sure you can figure it out.
- Suppositories. Again medication, or just glycerin (which did nothing for Nick) that we have been trying for a while. We've tried it and have found that it is great for preventing him from being constipated, but it just isn't working for getting him clean.
- Enemas. 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. That is how he is clean.
- There are different types of enemas.
- A regular tip enema, but I found that using this (like a fleet enema) doesn't work. Nick doesn't have the muscle control to tighten around the tip, so the fluid doesn't stay in, which is the whole point. So this hasn't worked for us
- A cone enema, is our next step. 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.
- Surgery. This is the final step. But we are not there yet. There are 2 different types of surgeries, which we will explore more when the time comes. But it takes the enema solution and starts at the top of the colon, 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.
We have also been doing (for a while) some other things to maximize our results.
Bearing down, have you ever tried to teach someone how to do this? Think about it for a sec, if it doesn't come naturally, what do you say? I feel like I'm at work some days (helping women have babies). Some things that have worked for us is laughing and lifting his bum off the toilet seat.
Positioning. We have him sitting on the toilet (gravity) with a stool to keep his knees above his hips to help.
Timing. You bowels are most active about 20 minutes after you eat. So putting Nick on the potty after dinner has worked well.
So we put all of this together, did a lot of Internet searches, talked to people and got our medical opinion. And we started day 1 of a bowel routine with a cone enema.
There are a number of different websites we used, but the one with the best step-by-step instructions was from here http://lifestyleaccelerator.com/myblog/health/bowel/ and she actually has a video to go with this. http://youtu.be/_hINaZkGWwg
Then I had to figure out what to actually purchase.
We ended up with the product from Hollister and I searched to find the best deal online at Canmeddirect What we needed was a kit with the bag, the tubing and the cone. About $50.
It took over 1 week to determine if what we purchased was latex-free.
Nothing on the packing says anything about latex, which I was very surprised by. And when I looked in the Hollister website, I found their response was very confusing.
The specifications for Hollister ostomy products do not include natural rubber latex as a component. The specification for products and packaging do not include natural rubber latex as a component, and our component suppliers do not add natural rubber as part of their production process.So of course I put the quote on facebook and got every one's opinion. Which is that legally companies are no longer able to say "latex free" so this is the wibbly-wobbly way of saying that it is latex free.
So. With my head full of all of this information, all of my supplies present and accounted for, our bathroom appropriately set up (we put a hook on the wall above the toilet to hold the bag), I printed out all of the directions I could find. Had directions from our nurse for the type of fluid to go in the bag (I have seen a wide variety of different recommendations for fluid).
I also had a bag of toys, a dvd player and some books ready to distract Nick to sit on the toilet for 30 minutes. And we talked about it.
I told Nick that we were doing something different today to help him poop. He was positive about it (which is good considering he hates when I have to help him poop).
And it went well.
It didn't bother Nickolas at all. He wasn't bored sitting on the potty and we got results. It wasn't messy, no leaking around the cone and it was easy.
After 30 minutes on the potty the diaper went back on and we were ready for bed.
I'm chalking it up for day 1 success.
But just because day 1 went well doesn't mean anything. But I'll still celebrate today's success!!
I also shared my knowledge on my "I want to learn about spina bifida" blog too!