Living with VACTERL Association

Antegrade Continence Enema is also known as a Malone Antegrade Continence Enema (MACE) or a Cecostomy.

 These are a surgically created openings on the abdomen that allow flushing of the bowel from the top to empty it and reduce stool leakage.

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VACTERL Visionaries is a peer-support and signposting platform run by adults with lived experience. We are not medical professionals and do not provide medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider regarding any medical condition or health decision.

This is a personal description of the procedure undertaken by one of our Visionaries. 

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I establish a regular routine to suit me.

I do my washout at the same time each day (or as advised by my specialist nurse)
I have noted that any people choose evening, so the bowel stays empty overnight and during the next day.

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I prepare properly before starting:

Catheter (correct size)
Prescribed enema fluid (usually warm tap water, sometimes with additives).

Too cold → cramping.

Too hot → risk of irritation / injury to bowel lining

Lubricant (water-based)

Syringe or enema bag
Tissues or wipes
Access to a toilet

Apply lubricating gel (if the catheter is not self lubricated)
Insert slowly and gently into the MACE opening.
Never force the catheter.
If resistance occurs, stop and try again gently.
If I cannot insert it, I will contact my stoma or specialist nurse.

Give the enema slowly

Allow fluid to flow in gradually.
Going too fast can cause pain or cramping.
If cramping happens, I pause briefly, then continue more slowly.

Bowel emptying usually starts within 10–30 minutes.
Emptying may continue for up to 30–90 minutes.
Allow enough time so I don’t feel rushed.

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How I reduce the risk of blockages:

I drink plenty of fluids.
I follow a recommended diet.
I do washouts regularly.
I never skip washouts without medical advice.

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For me to achieve long term success:

Routine is the most important factor.
Keep the opening clean - helps prevent irritation and infection.

Wash daily with warm water.

Dry gently.
Avoid harsh soaps unless advised.
Use correct catheter size.
Follow my specialist nurse’s instructions.
Attend regular check-ups.

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Common problems - I will  makecontact with my nurse or doctor if I notice:

Pain during washout.
Bleeding.
Difficulty inserting catheter.
Leakage between washouts.
Redness, swelling, or discharge.
Fever.
These may indicate irritation, infection, or narrowing.