Fecal incontinence is not psychological problem but physiological one.
„Children born with anorectal malformation lack the intrinsic sensation to feel stool or gas passing through their rectum. Therefore, many times the child may unknowingly soil, become accustomed to the smell of stool, which upsets the entire family and anyone around him / her. “
Cloaca is one of the indicators of poor bowel control.
After the main repair and after the colostomy closure it is possible to establish the functional prognosis. Signs of Poor Prognosis: constant soiling and passing of stool , No sensation (no pushing) , Urinary incontinence. So S. has all of them.
How can we achieve Social Cleanliness?
What to do to avoid bowel (soiling) accidents?
What can be done a so child can go to playschool or school in normal underwear instead of nappies?
And by that will be socially accepted.
And in the result improve a quality of life and self-esteem ?
The answer is: Bowel control program
You can get bowel control through a bowel management program. This program is different for each person, and may include: improve consistency of stool, diet ,activity, medicine , things to do every day, Stimulate emptying on a routine basis.
“For these children, the bowel management program with a daily enema should be started when the child is 3 or 4 years old, or when their peers are out of diapers.”
Controlling bowels helps to avoid:
• stool soiling
• loose stool (diarrhoea)
• dry, hard stool (constipation)
• infections of the bladder and kidney
We have tried to Improve consistency of stool by Changing diet and eliminating food that made stool runny. And in the end the poor bum was constantly burned from all the acid in food (and antibiotics).
Like cheese and dairy in general, more groats – especially millet, etc, raw fruits.
But a main way of controlling stool is artificial way – two types of medications:
1: to achieve constipation by using for example Loperamide (Immodium )
2: to avoid constipation by using laxatives
We tired giving S. Loperamide but she just wouldn’t take it ( it taste horrible). We used all kinds of tricks to sneak it in – no way.
Laxatives were never an option for us as S. without them had constantly damaged and sore skin in “nappy area”
So naturally we need to move on and start bowel program last option : ENEMAS/ wash outs.
An enema is, by definition, the injection of liquid through the anus to motivate evacuation. Enemas are great for cleansing your colon and have many additional benefits
Enemas seems like the only way to keep our S. clean for 24 hours. I knew it was the next step to improve our baby girls life. Yet, at the same time I couldn’t stop thinking, its another “invasion” on her little body.
First was dilatations – very traumatic for two us- I hated doing it to S. (I cried before and after- for whole 5 months of doing it) and naturally S. hated it even more.
SO much, that when for the first time we tried to catheterise her she was crying and kicking because she thought we going to do dilatation.
Then catheters and now this… idea of enemas was just scary.
Five weeks ago we visited Crumlin Hospital and did first ever enema.
Months before I read about all types of them, watched videos and got more and more scared.Seen the Peristeen system and was really scared… Turned out the wash out we were introduce to (by our lovely stoma nurse Stephanie), wasn’t so invasive.
Willis wash out system. ( to be exact ” Willis Home Bowel Washout kit” )
We came over to talk about our options, whats the best for S. And as few times before – S. surprised us. We explained what will happen and what we will do. We tried. S. was brave and let us do it and she had her first go on the toilet.
Full success. She was so brave and calm. I’m so proud of my baby girl I had tears in my eyes.
So we started at home. On beginning every day, then had a few days break, to find out how it works on S. First 3 weeks were messy. Less poops but still not exactly clean.
After consultations with stoma nurses Ann and Stephanie, we came up with a plan. Keep doing every day, at the same time, and wait for the results.
And we did. S. stayed clean for 2-3 days, then dirty nappy couple times a day, but its getting better..
And most important- after first 2 weeks of fighting and running away each time she seen we are getting ready, S. noticed we don’t disturb her so much during the day, once its done every evening. Plus she really likes her „BIG GIRLS PANTS with princess’s” 😀
New routine : enema, potty and cartoons ,then drugs, bath ,catheterising, story book and bed.
How did it effect our life? how did it effect S.?
She is still the same happy girl who loves to play and don’t like to be disturbed. Now shes not. not that often anyway 😉
We still change her nappies often and catheterise her 4-5 times a day, nut it doesn’t take as much time as it did when she had 8-12 up to 14 poops a day.
Her skin on nappy area never look so well! Never – since she had a stoma closure her skin was in very poor condition. if it healed it stayed cleaned for max 5 days. week at most. But then it was back raw red, then big blisters that broke and bleed….and as you can imagine she cried every time we clean her/wash her… she was ( and hard to blame her fed up with it).
We tried tonnes of creams, powders, different nappies and other tricks from all over the world – its actually an idea for new note as I keep being asked about it.
SO healed skin for over month now, happy girl who’s not disturbed every half an hour while she’s playing.
AND we decided since it works so well we will sign S. into a playschool.
Hopefully she will be able to start after New Year.
Closest future looks bright
Drop in here soon to check how did it go 🙂
P.S. Interesting fact
Only recently I found information
„Breast milk contains the right amount of nutrients and is easily digested by babies. This means that a breastfed baby is less likely to suffer from digestive problems such as constipation. „
I always read that most kids with anorectal malformations suffer from constipations, so I couldn’t understand why S. wasn’t – and completely opposite – suffered from loose poops. I breastfed S. for 3 years and 3 months. I think it could have been way worse if we had to fight constipation.