Chronic Constipation: Doctor's Office Cheatsheet

Chronic Constipation: Doctor's Office Cheatsheet

Why Read This?

Chronic constipation is a very common childhood ailment. Every doctor is familiar with the condition and the laxatives used to treat it.

Yet it took 18 months and 4 doctors for me to finally understand the severity of my daughter's condition and embark on a treatment plan that actually worked.

This wasn't because any of those doctors prescribed the 'wrong' treatment. It was because I didn't know how to tell whether those treatments were working effectively. And as it happened, they were barely working at all.

Asking the right questions, and knowing something about what to expect of a treatment before you get started, can make a huge difference to how quickly your child starts to recover.

And that's what this cheatsheet is all about.

Disclaimer: I feel like I'm walking a very fine line by writing this. I can not possibly diagnose your child. Even if I was qualified to do so (which I'm not - I'm not a medical doctor) it's impossible to give tailored medical advice via article on the internet.

But what I can do, is give you some questions to ask your doctor during your appointment. Not to undermine them or question their diagnosis but to make sure that you're very clear about what is and isn't being treated, what you can expect at different stages of treatment, and how you know whether that treatment is working.

Explaining Yourself Properly

In order to prescribe adequate treatment, it's vital that your doctor understands the severity of your child's condition.

No doctor is going to assume the worst, when so many children are merely 'constipated from time to time'.

If you're visiting because you've seen a couple of warning signs and you don't want that to escalate, you wouldn't expect the same treatment as someone who has seen those same warning signs on and off for six months, or someone who has had 6 months of encopresis (leaking of sticky or crumbly poop).

So be as specific as you can and if you suspect that your child has some kind of blockage or impaction, make sure you explain why. Try to remember when you first saw any symptoms because that will help your doctor guess at what your child's insides might look like.

Treating Chronic Constipation: A Recap

For an overview of how chronic constipation is treated and the types of laxatives prescribed, please read this blog: Treating Chronic Constipation

To recap: Chronic constipation has two phases of treatment:

1) The Cleanout Phase. Clear the backup, clear the impaction.
2) The Maintenance Phase. Maintain a clear bowel to give the muscles and nerves time to recover.

You need to consider both of these phases in relation to your child's condition and the treatment you have been prescribed.

If you're seeing your doctor as a preventative measure, you probably won't have much of a cleanout phase. If you suspect your child is properly backed up, you should be able to identify the two phases of treatment.

Five Vital Questions That You Should Answer on Every Visit To Your Doctor

Answering these five questions will help you no end:

1. What exactly are you treating? Try to get your doctor to describe what they think your child's bowel looks like, and how they arrived at that conclusion. Without an abdominal Xray, this will probably involve guesswork... Perhaps they think there's an impaction the size of grapefruit? Or maybe they think there's no impaction at all?

Painting a mental picture of your child's intestines provides a context for the treatment plan and it is extremely useful for you both to establish a starting point. Better yet, maybe they'll draw you a diagram.

If you've seen symptoms that don't match what your doctor is describing you'll be able to clarify things from the outset.

For example: if you have overflow soiling / encopresis or three days between huge sticky poops that stink the house out and your doctor doesn't describe a large blockage and a creditable mechanism to explain your sypmtoms - they've not realised the severity of your child's condition.

The same goes for any bladder related symptoms. If you suspect chronic constipation as the cause and your doctor isn't treating a large hard blockage that's pressing on the bladder, you're not on the same page.

2. How does the prescribed treatment work? Ask your doctor to explain the mechanism of their prescribed laxatives. Have you been prescribed a stimulant laxative, or an osmotic laxative, or both?

You need to understand how this particular treatment will address your child's condition. This will relate back to question 1: what exactly are you treating.

Before you visit your doctor, make sure you have a general understanding of how laxatives work. This means you'll understand your treatment plan - which is a great first step to having a sensible conversation with your doctor.

3. How will you know your treatment is working? And what do you do if it isn't? Ask how (and when) you'll know that the treatment has worked. Ask for answers related to bowel movements or behaviour rather than length of treatment (try this for a month) or quantity of laxative consumed (keep going until you finish the bottle).

Both are fine strategies for a treatment plan, but no good for knowing if it's working as it should. Running out of medication, or finishing a course of treatment is not an end point! That might be a good time to reassess, but a predetermined schedule does not tell you whether you've acheived your aim.

What will you see? What will you smell? How will your child's behaviour change?

Asking what your doctor expects to happen will also help you think about how to prepare. Would it be unfair to send your child to school? Would it help to structure your day in a particular way?

It's also vital to ask: What if this treatment doesn't work as expected? What can you learn from that and what should you do about it? See my story below for an example of how this conversation might go in an ideal world.

If you're expecting to have to clear an impaction, you'll want to know how you'll know your clean-out phase is complete.

4. Does your prescription match the instructions on the packet? And how much water does your child need to drink to get good results?

Some laxatives give a different dosage on the packet to the one the doctor prescribes so you can't always check the instructions to remember what was said. Your doctor will be thinking about what usually works, taking into account the manufacturer's dosage guidelines, and your child's age and weight.

Some work best if you 'top up' with extra drinks because the dose of medicine itself is kept small and easy.

Do you have any flexibility? Does your child need to drink everything in one go or can you pace it throughout the day?

Have a think about practicalities too. Can you realistically get that much liquid into your child in the time available? Will you need the school to help out? Will that require a doctor's note?

If you have been prescribed (or asked for) glycerin suppositories or pre-prepared micro enemas and are worried about any aspect of anal medication, ask about anything that's worrying you.

5. When should you see your doctor again? If this is your first appointment and you've seen signs of impaction, always, always come back. This is mostly for the UK peeps who need to book non-emergency appointments two to three weeks in advance. Book your next appointment on your way out of the surgery - you can always cancel three days before if you decide you don't need it.

Treating full blown chronic constipation can be a lengthly, frustrating and isolating process.

Pleas for help in facebook groups say things like "I'm at the end of my rope." "I just don't know what else to try." "I'm at my wits end."

Don't let yourself fall into that position. Seeing your doctor regularly is as much for your own sanity as for your child's health. You will need support as you administer the treatment - and your doctor can provide bucket loads of reassurance if you're proactive with your appointments.

An Ideal Conversation With Your Doctor

Let's start with a conversation that was far from ideal, and then craft a much better discussion that results in exactly the same treatment being prescribed.

This was my experience after explaining my 3 year old's intermittent bouts of encopresis and withholding poop. At this point I knew absolutely nothing about chronic constipation. I only knew that previously prescribed treatments hadn't lead to any improvement.

Doctor: Give her 2.5ml of senna before bed and she'll do a poo in the morning.

Me: What if she doesn't?

Doctor: She will.

Me: But what if she doesn't?

Doctor: Don't worry, she will!

Me: What if she wakes up in the night to poo? Will she lose control and poo in the bed?

Doctor: Oh no no no no no. It will fine.

Me: So... how long do we take it. A week? Till we finish the bottle...?

Doctor: Until she is going again.

This doctor had no clue what she was dealing with. And neither did I.

She prescribed a conservative dose of Senna - a stimulant laxative - hoping that it would coax along any slow poo without causing my daughter stomach cramps. For another child - that might have been just perfect, but for us it was never going to work.

Days later, with no result, I called the surgery. I had seen no change in her erratic pooping pattern. I recieved a message back: double the dose. Still no result. So a few days later I called again. "Keep doubling the dose". By now I'd lost all faith in my doctor and I felt like I was in some kind of medication freefall. And I had no idea why the treatment wasn't working.

Now here's my ideal version of that conversation - with the same treatment plan and the same outcome:

Doctor: Give her 2.5ml of senna before bed and she'll do a poo in the morning.

Me: OK. How does that work and how's it going to help?

Doctor: Senna is a stimulant laxative. When it reaches the intestine, it causes the walls to contract and squeeze the poop in the tubes towards the rectum. We want to get the dosage right - so that the squeeze is gentle enough not to hurt, but strong enough to move any poo that might be stuck. She's only little, so let's err on the side of caution and start with 2.5ml - that usually works pretty well.

Me: OK. So, what if it doesn't work?

Doctor: Well, that means one of three things. Either there's more poop than I thought and the medication isn't triggering the contraction, or there's a blockage further down so we're pushing the poop but it can't go anywhere, or this dose doesn't produce enough of a contraction in your child for it have an effect.

Me: OK. So, what should I do if it doesn't work?

Doctor: Try it for 3 nights, if it doesn't work, double the dose for the next three nights. If that doesn't work, double the dose again. Don't worry, it's perfectly safe to do that. If it's still not working, we'll have learned something useful and can tackle the problem in a different way.

Me: What if she wakes up in the night to poo? Will she lose control and poo in the bed?

Doctor: Oh no, don't worry about that. This is a very low dose of senna. Enough to compliment peristalsis, but not enough to cause her intense urgency.

However, you can learn a lot from looking at the poop she produces. If it's soft or loose then that's the fresher poop moving through. If she's not pooped for 3 or 4 days, you should be seeing much harder poo coming through as well - the stuff that's 4 days old. If a week goes by and you're not seeing that - that's suspicious. There might be a larger blockage that we need to break down in a different way.

You might also notice a change in the smell. Stool that has been hanging around in the bowels for days smells pretty bad! As the fresher stuff comes through it will smell different.

Me: So, how long should she need to take it? Do we stop when the fresh stuff comes through?

(Jenn's note: I totally made this next bit up, but either option sounds like a reasonable strategy for a mild case of constipation.)

Doctor: (maybe) You'll need to keep going until she produces a poop that looks and smells normal. If she does that every day for a fortnight on the medication, you can stop taking it and see if she keeps up the rhythm by herself.

Or...

Doctor: (maybe) Use it every night for a week. Then use it in the evening if she doesn't poo by herself during the day. Keep an eye on her for a month. If you find that you're still using it, come back.

Me: A month! That seems an awfully long time!

Doctor: (maybe) Don't worry. It's not going to do her any harm. It's a very low dose. It's just keeping her bowel ticking over. We need to make sure anything old gets pushed through and nothing else gets stuck for a while.

Me:<Beetles off to make appointment for 2 week's time>

You see? In the ideal conversation I'm really clued up on why we're trying this treatment, how the doctor expects it to work, and how we'll know if we need to try a different angle. And even though it was never going to work, we could fail quickly and gracefully and with complete faith in our doctor.

As it was, the experience undermined the confidence I wanted to have in my doctor's recommendations.

I ended up pushing for a referral to a paediatrician - who was extremely annoyed to have us cluttering up his clinic.

When his prescribed treatment didn't work either (but only because I didn't ask these questions) we switched to a different paediatrician with a better bedside manner, a more aggressive cleanout strategy and the foresight to order an Xray. Things started looking up after that!

Booking Your Own Follow Up Appointments

When we were signed off by the consultant and referred back to our GP, I booked an appointment every fortnight for at least two months. We'd had so many failed treatments by that point, and relapse is so common, that I decided to report our progress whether they wanted to see me or not.

I don't recommend harassing your GP every fortnight for the duration of treatment - which can be months or years - but in the beginning you need to know that you're on the right track - and failing to properly finish a cleanout or get daily clearence from your maintenance dose will set you up for a relapse!

Plus, visiting a doctor can give you hope. Just having somewhere to discuss maintenance dose adjustments can make you feel less isolated and more like there's an end in sight.

You can pay back the NHS by getting your child properly clean and avoiding years of ongoing treatment.

Full Blown Chronic Constipation: Don't Be Fobbed Off!

Let's say you've had months of symptoms and have just read something or spoken to someone which made you feel relief... "That's it! That explains everything!" You think you're dealing with full blown chronic constipation complete with an impaction and backed up stool in the colon so you book a visit to the doctor. Do Not be fobbed off with maintenance style treatment options.

You need to clear out the bowel as soon as possible so that it can start to shrink back to size and heal.

With high doses of oral laxatives, combined with daily enemas, your child could be clear within a week or two. That same child would still be impacted 6 months later on 2 sachets of movicol a day.

An Xray Can Make A Massive Difference

If you're in this up to your eyeballs, it won't matter how often you read about physical damage to the rectum, there are still going to be times when frustration gets the better of you. Those times will be dramatically reduced if you've seen an Xray that proves this is beyond your child's control.

If it is immediately obvious to your doctor that your child has a large impaction, they might be quite casual in the way they prescribe treatment. To them, this is simply a physical problem with a physical solution. Prescribe a treatment to clear the blockage, then shrink the rectum and move on.

But to you and your child this is everyday life.

You're going to be living with some sort of treatment every day for weeks or months - and when that involves repeatedly convincing a youngster to 'get with the program' you can end up with a real battle on your hands.

You'll have to find your way through time consuming treatments, restricted family outings (if you need to stay in because there's going to be a lot of messy trips to the toilet), cajoling, explaining, reasoning, bribing, helping and trying not to show your exasperation... all while giving siblings their fair share of your attention.

So what looks like a very simple treatment can play havoc with household harmony.

And in that situation, having an Xray to remind you of what you're up against can keep you sane and committed to a thorough long term treatment despite all the difficulties it presents.

Does having an Xray change the treatment your knowledgeable doctor would prescribe? It does not.

Is an Xray necessary for diagnosis? Not for a doctor who sees chronically constipated kids day in day out, but it can be an eye opener for a GP who thinks they're treating mild constipation.

Does it help parents to successfully treat impaction? YES it does! And a second Xray is great for showing that the clean out phase has worked and there's hope around the corner.

My Top Tip For A Successful Cleanout

Know Your End Point!

If you're prescribed a movicol or miralax cleanout, it will involve taking large quantities of laxative over a number of days. Remember: a cleanout is over when your child is clean, not when the treatment plan ends.

Several times I followed a given prescription rather than studying the poop that it produced.

For example, a prescription might state:
Take 2 sachets of movicol on days 1 and 2,
Take 4 sachets on days 3 and 4,
Take 6 sachets on days 5 and 6,
then switch to a maintenance dose.

So you might think the cleanout would end after day 6 - but in fact the cleanout doesn't end until you see poop that smells fresh and looks like silky smooth chocolate custard.

A stubborn or long term blockage might not even start to break down until day 4 or 5 of your first cleanout. So just as the cleanout is starting to take effect, you could end up switching to a maintenance dose.

That's hopeless but it's more common than you might think. The backup gets cleared but the impaction hangs around, slowly building up again and causing symptoms to return 6 weeks down the line.

You need to check with your doctor how many days you can keep going on the maximum cleanout dose, or what you should do if you reach day 6 but your child isn't clean.

To recap:

6, 8 or 12 sachets of paediatric movicol per day should result in Silky Smooth Chocolate Custard Poops. If the poops are grainy, sticky or stinky: you're not done. If they look like solid hot dogs: you're not done either. Silky. Smooth. Chocolate. Custard.

Suppositories and Enemas Will Give You Your Life Back

If your child has encopresis (soiling) or shows strong holding behaviours (focuses intently on holding while denying that they're doing it) suppositories and micro enemas will make your life a million times easier than it has been.

If you can convince yourself that they're not evil and don't amount to sexual abuse (they're not and they don't) then they will become your best friends.

In the UK your doctor might be reluctant to prescribe them - because they don't clear a backup - but our consultant was fine with me using suppositories to manage our lives as long as I followed his laxative program at the same time. My GP happily prescribed micro enemas when I asked for them.

How do suppositories help?

The things that most impacted my life with chronic constipation were the soiling, the holding and the unpredictability of the treatments (take this laxative and wait for somewhere between 8 hours and 48 hours for it to take effect). All were instantly rectified with suppositories.

By guaranteeing a poop at a convenient time every single day we were able to keep the rectum clear (despite it being a toneless flappy bag after the cleanout) and my daughter's pants and bottom clean.

In theory, we should have been able to get the same effect with osmotic laxative. Get the dose just right and you get a daily soft-but-formed poop. But in real life it was impossible. My daughter had no trouble holding for days because her rectum was damaged so she didn't feel the poop, and when she did her automatic clamping response took over. Trying to adjust the dose when you have a 2 day lag time between consume and effect was maddening. Too little: no poo. Too much: liquid leaks.

But with a suppository we could focus on the consistency of the stool without needing to trigger the natural 'aha - time for a poo!' response. My daughter, the champion holder, never attempted to hold against the suppository. She always sat herself on the potty and produced a poo around 4 minutes after it was inserted.

No more leaking. No more rashes. No more involuntary holding.

Despite the ongoing treatment plans, as soon as we discovered the magic of suppositories our lives were immediately so much easier.

It was years before her body fully recovered. I cannot imagine how hard it would have been to live through that without suppositories to help us.

You don't even need a prescription. You can pick them up at your local chemist. For age 2 to 5, try the 2g ones. For age 6 and up you can get away with the 4g adult size (which every chemist will have in stock).

Horses For Courses

There's a steep gradient of the severity of constipation so of course not all treatment plans will be the same...

The 'get clean' part can be a nightmare if there's a large impaction, but if there's nothing major going on then a consistent push from behind with a steady dose of laxative can work out fine.

The trouble is, it can be very difficult to know where you stand before you start treatment - which is why it's so helpful to have a clear picture of what your doctor thinks they're treating, and how they expect that treatment to work.

They might be right, or they might be wrong, but at least you know what they expect to happen - which means you can ask the right questions if you see something different.

Good Luck!

If you're off to visit your doctor soon, I hope you have a very productive appointment.

If it turns out you're in it for the long haul, at least you're getting started.

We made it back to normality and you will too!

If you've found these blogs and articles helpful, please drop me a line to let me know. Thanks :) (And if there's anything else you'd like information on, just ask.) jenn@bornready.uk