Parenting With Crohn's Disease: Words by Age, Backup Sheet and Hard Day List

Updated 3 October 2026

At a glance

Crohn's & Colitis UK says telling your child about your IBD can be a positive experience and that even young children may sense something is wrong.
The Crohn's & Colitis Foundation reports fatigue in nearly 80% of people with active IBD and 50% of those in clinical remission.
The Foundation's flare brochure says to track your disease between appointments so you and your doctor can see how IBD is affecting your life.
A backup sheet with names, numbers and school details means a hard day does not need a new plan from scratch.
Crohn's Journey keeps stool entries, flare flags and notes on one dated history.

Parenting does not pause for a flare. The school run, the meals, the bath and the homework still arrive on the days when your abdomen hurts, your energy is low and your thoughts are slow. Children notice, and so do you. This guide covers what to say to your children at different ages, how to write a backup sheet for hard days, how to keep a short dated record of what the day cost, what to ask at a visit and how to look after your own mood. It is general information. Decisions about treatment belong to your care team, and questions about your children's wellbeing belong to their own clinicians and school.

Whether and how to tell your children

Crohn's & Colitis UK publishes an information sheet for parents with IBD. It says some parents have found telling their child to be a positive experience that helps them develop a closer relationship, while others prefer not to worry a child, particularly if the condition is mild.

The sheet notes that even young children may sense that something is wrong, particularly if they overhear others talking about your IBD or see you take medication. If a child is not told, they may imagine something worse than the truth and may start to blame themselves, so it is important for children to understand that your IBD is no one's fault.

It suggests choosing a time when you are not in a hurry, in a place where you will not be interrupted, and not explaining everything at once. If you have more than one child, it is usually best to tell them together so none feels that a sibling knows more.

These are the views of a patient organization, and families differ. You decide what to say and when.

A short note for yourself can help: what you want them to know, what words you will use and who else could be present. It is a plan for one conversation, not a script.

From Crohn's Journey, we recommend writing the date you spoke and what each child asked, because the questions tend to return in different forms weeks later.

The Daily Journal in Crohn's Journey takes free-text or voice notes, so the conversation, the questions and your own reactions can be written down privately on the day.

Plain words by age

The same Crohn's & Colitis UK sheet gives examples of phrases by age, which you can adapt to your own voice and family.

For toddlers it suggests a simple statement is enough, such as that a parent is feeling poorly. For ages 3 to 5, it suggests simple explanations, visual tools such as books or drawings and a reminder that IBD is not contagious. It also suggests reminding a child not to touch your medication.

For ages 6 to 11, it suggests explaining how your IBD may affect the family's routine, for example if you sometimes feel too tired to take them to school, and saying things like "Sometimes I feel very ill or tired, but other times I feel fine." It adds that children may ask about dying, and suggests answering that question directly and calmly.

For ages 12 and over, it suggests more detail, and says teenagers may find information empowering. Older children may worry about getting the same condition. For every 100 people with Crohn's having a child, it reports, 5 to 10 of the children may be expected to develop IBD, and it suggests reassuring them that the risk is small.

The sheet also suggests being honest and avoiding promises you may not keep, with wording such as "I will try to" or "I think I will be able to".

Whatever the age, a child is helped by the same few facts: what is happening, whether it is their fault, what will change and who is looking after them.

Phrases you settle on can be saved in Crohn's Journey, where the Daily Journal holds partner talks and visit debriefs apart from the dated lines, and the Learn topics give short reading on flares and bathroom load.

The backup sheet for hard days

A flare or a pain-heavy day is harder when every arrangement has to be invented that morning. A single sheet, written on a good day, lowers the load.

Checklist for the backup sheet

Crohn's Journey (part of Health Journey Labs) suggests five sections for the sheet:

Names and phone numbers of the people who could help: a partner, a relative, a neighbor, a friend with children the same age.
The school or childcare contact, the pickup times and who is on the authorized list.
Your children's essentials: allergies, regular medicines, bedtimes, the pediatrician's number.
Which daily tasks are fixed and which can wait: school drop-off and medicines, for instance, against laundry or a bath.
What the children can do when you are unwell, in their own words: choose a book, bring a drink, call a named adult.

Source: Crohn's Journey

Keep a copy where another adult can find it, and tell them it exists.

Review the sheet when something changes. A sheet from last year may have an outdated number.

Nothing on the sheet is a promise. It is a record of options that you and your family have agreed on.

In Crohn's Journey, the Weekly Goals tracker holds one small aim for the week, such as updating the sheet or asking a neighbor, and marks whether it held.

Recording what the hard day cost

A parent's hard day has two sides: what the condition did and what it asked of the household. A dated record keeps both.

NIDDK and MedlinePlus list the most common symptoms of Crohn's disease as diarrhea, cramping and pain in the abdomen, and weight loss, with fatigue, fever, nausea and joint pain among other possible symptoms. The Crohn's & Colitis Foundation defines a flare as the reappearance of disease symptoms.

Four lines for a parent's hard day

On a hard day, Crohn's Journey keeps four short lines:

The symptom line: pain from 0 to 10 and where, stool form and number of trips if your team asked, energy in a word.
The household line: what you could not do, what someone else did, what the children needed.
Your own words for slow thinking or a foggy day, kept concrete, such as "could not follow the school email".
A weekly count of days on which the backup sheet was used, which shows how often the condition changed the family's week.

For getting through the flare day itself, see how to get through a Crohn's flare day.

The Foundation's flare brochure says to track your disease between appointments so that you and your doctor can see how IBD is affecting your life and whether any changes are needed.

The Flare Tracker in Crohn's Journey flags a day clearly worse than a usual week with onset, intensity and a short note, and the Daily check-in adds energy and mood to the same date.

Tiredness and patience

Fatigue changes how a parent shows up, and it can be easy to feel that you are failing.

The Crohn's & Colitis Foundation reports that fatigue affects nearly 80% of IBD patients with active disease and 50% of patients in clinical remission. Tiredness of this kind is common in people with IBD, and it is a symptom to record and report.

The Crohn's & Colitis UK sheet suggests telling children that IBD can make you more tired and easily irritated, that the irritability comes from the condition, that you still love them and that it is never their fault. It suggests spending time with your child when your energy is up, and finding ways to keep things enjoyable at home when you feel less well.

For the record, note the day's tiredness in a word and what it was linked to: a procedure, a bad night, a school event.

Note the times of day when thinking felt slower, and what you were doing.

Ask the care team at the visit what could be contributing to the tiredness. Several causes can overlap, and a clinician can help separate them.

Tell a clinician if the tiredness is increasing or is beyond what you can manage.

At the visit, the My Labs tracker in Crohn's Journey keeps dates for blood counts and other results, so the tiredness can be read with any tests your team ordered.

Hospital days and appointments

Some parents have procedures, infusions, tests or a hospital stay. Children cope better when they know ahead of time.

The Crohn's & Colitis UK sheet suggests that before a hospital stay you tell your child who will look after them, why you need to go, how long for and how it will affect you afterwards. It also suggests describing what they might see if they visit, such as drips or equipment, so they are not overwhelmed. A pre-schooler may be anxious about separation, so the sheet suggests letting them know in advance of any changes to routine and when they will see or speak to you.

Notes for a hospital day

For a procedure or hospital stay, Crohn's Journey lists three things to prepare:

The dates, the pickup arrangements and the person at home, plus the clinic's number, a fixed point of contact and who will tell the school.
A wallet card with your condition, your care team's number and one emergency contact.
After the appointment, one line on what you were told and one on what you will tell the children.

Ask the team how to describe a procedure to children, since the clinic may have its own wording or materials.

Your clinicians and short visit notes live in My Care Team in Crohn's Journey, so what you were told and the date of the next visit stay together.

Looking after your own mood

Parents with a long-term condition carry a double load, and guilt is common. Record mood as you would any symptom.

Mood lines for a parent with Crohn's

Crohn's Journey records mood with three entries:

One word for mood on the daily line, with what happened and who you saw.
Thoughts such as "I am failing them", written down with the date and what led to them, so a clinician can discuss them with you.
A note of who you told how the week has been: a partner, a friend or another adult.

Tell a clinician if low mood or worry lasts, grows or starts to shape decisions. It is a normal topic for a visit.

The Crohn's & Colitis UK sheet notes that seeing you show emotions in a measured way lets a child know it is okay to share theirs, and that hiding your feelings may make it harder for them to open up.

If you are thinking about hurting yourself, call your local emergency number first and then a crisis line where you live (988 is one example in the United States), and tell someone near you.

Mood goes into the Daily check-in in Crohn's Journey, beside the physical entries, and the Daily Journal has room for leftover guilt after you canceled, kept apart from the dated lines.

What to bring to your visit

Clinic visits are short and rarely about the household. A page makes that part visible.

Checklist of what to bring as a parent

Crohn's Journey puts the parent's visit page on one sheet:

A four-week summary: hard days, better days, pain and energy.
The number of days the backup sheet was used.
Two or three examples of what a hard day cost, in a line each.
Medicine entries with dates, as prescribed.
Questions in order of importance.

Questions worth considering: what could explain the tiredness, whether any result is due, whether it is worth reviewing the medicine entries together, what to watch for and when to call.

Tell the clinician that you care for children. It changes the practical questions, such as how to plan around a procedure.

Ask which changes should prompt a call, and write the answer in their words. Ask what to bring next time, and write the date.

The guide on what to bring to a 15-minute Crohn's visit lists the wider packet, and how to explain Crohn's to family who cannot see it covers the wider household.

Before you go, the Doctor Report in Crohn's Journey exports a one-page summary of dates, symptoms and how you functioned, built from what you logged.

How Crohn's Journey can help

A notebook can hold the backup sheet, the record and the questions. When stool entries, pain, energy and medicine entries need to share dates across months, an app may save time, and the Crohn's apps guide compares several.

Crohn's Journey is a personal Crohn's disease tracker from Health Journey Labs on the App Store and Google Play. On a school-run morning, it takes the daily entry in a few taps, before the day begins. Across months, the history shows how many hard days there were and how the household coped, which gives your clinician dates to read. Below is what you can use and how each part helps.

Stool Tracker (Bristol Scale) — Stool form on the Bristol Scale, urgency or bathroom load and short marks, read with pain, meals and energy.
Food Tracker — Meal or drink lines, read with pain, urgency, energy, stool and sleep.
Flare Tracker — A flag for a day clearly worse than the usual week, with onset, intensity and a short note, read against the weeks around it to tell a one-off rise from a repeating pattern.
Daily check-in — A guided daily pass covering physical symptoms, emotional state, nutrition, sleep, exercise, medicines and outside factors.
Daily Journal — Free-text or voice notes on what the day limited, bathroom maps, partner talks, visit debriefs and leftover guilt after you canceled.
Weight Tracker — Scale readings or body notes, including weigh-ins and nutrition notes watched with a clinician, read with stool, meals, energy and sleep.
My Meds — Medicine names, timing and medication entries, including biologics, steroids and other options you actually use, read with stool weeks, pain, sleep and the rest of the tracked history.
My Labs — Result dates for blood counts, stool tests, calprotectin, imaging and other tests, read with symptoms and function.
Weekly Goals — One small aim for the week and a mark for whether it held.
Learn — Short education topics on flares, pacing, bathroom load and visit prep, to read with your own logged weeks.
AI companions — Clara for general chat plus specialist companions covering knowledge, fitness, nutrition and relationships, all of which already see your logged history, useful for visit wording, a calm partner script, a soft rain-check line or a listening ear after a hard bathroom day.
My Assessments — Structured check-ins beyond daily scores, plus life and social context from onboarding.
My Care Team — Your clinicians and short visit notes, for visit prep, notes during the visit and review afterward, including a visit that centers on stool count while function gets less room.
Doctor Report — A one-page summary exported from your logged history, covering dates, stool and meal context, symptoms and how you functioned.
Period Tracker — Start and stop dates, flow, and how heavy or light bleeding felt, read with pain, stool, energy and everything else logged.

Everything you log builds one history, and insights get stronger as it grows. Custom symptoms let you add your own labels.

We make Crohn's Journey at Health Journey Labs. This guide is educational and does not replace medical advice. Diagnosis, medication decisions, and urgent care decisions belong with your treating clinicians.

Sources

FAQ

Do I have to tell my children about my Crohn's disease?

No, it is your decision. Crohn's & Colitis UK notes that some parents find telling their child positive, while others prefer not to worry them, and that even young children may sense that something is wrong.

In Crohn's Journey, the Daily Journal keeps free-text or voice notes, so what you decide to say, and what each child asked, can be written down privately and read back before the next conversation.

My child thinks it is their fault. What can I say?

Say clearly that your Crohn's disease is no one's fault, and repeat it. Crohn's & Colitis UK suggests that children may blame themselves, especially if nobody is talking about it, so saying it aloud matters.

The Daily Journal in Crohn's Journey has room for the exact words you used and how your child responded, so you can see which wording helped when a similar question comes up again.

Will my child get Crohn's disease?

Crohn's & Colitis UK says that for every 100 people with Crohn's having a child, 5 to 10 of the children may be expected to develop IBD, and it suggests reassuring them that the risk is small. For your own family, ask your gastroenterologist.

My Care Team in Crohn's Journey holds your clinicians with short visit notes, so a question about family history can be written beforehand and the answer saved with the date of the visit.

I am too tired to parent properly. Is that normal?

Tiredness is common in people with IBD. The Crohn's & Colitis Foundation reports fatigue in nearly 80% of people with active disease and 50% of those in remission, so it is worth recording and raising with your team.

The Daily check-in in Crohn's Journey keeps energy, mood and pain on the same date, so a clinician can read how the tiredness moves with the rest of your week and with any results.

What should go on the backup sheet?

Names and numbers of helpers, the school or childcare contacts, pickup times, your children's essentials and which tasks can wait. Write it on a good day, keep a copy where another adult can find it and update it when something changes.

The Weekly Goals tracker in Crohn's Journey holds one small aim for the week, such as updating the sheet, and marks whether it held, which makes a paperwork step easier to finish.

Should I tell the school?

That is for you to decide, and the school may need only the practical facts, such as who may pick up your children on a hard day. Rules and routines differ, so ask the school what they need.

The Daily Journal in Crohn's Journey takes free-text or voice notes, so a short message to the school can be drafted when you have the energy and sent when you choose.

How do I prepare my children for a hospital stay?

Crohn's & Colitis UK suggests telling them who will look after them, why you need to go, for how long and how it will affect you afterwards, and describing what they might see if they visit. Your team may have materials.

My Care Team in Crohn's Journey stores visit notes and dates, so the plan for the days you are away, and the answers the team gave, are in one place for your family.

My medicines are changing. What should I tell my children?

Keep it simple and honest, and remind young children not to touch your medication. Decisions about the medicines themselves belong to your prescriber, and it is worth asking the prescriber whether to review the entries together.

My Meds in Crohn's Journey keeps medicine names, timing and medication entries with dates, so the changes and the weeks around them are visible together at the next visit with your prescriber.

Can an AI companion help me find the words?

It can help you draft wording by age and summarize your logged history, and you choose what to say and what to leave out. For your children's wellbeing, ask their own clinicians or school.

Clara and the specialist companions in Crohn's Journey see your logged history, so a draft can reflect your real week and your own dates rather than examples from someone else's family.

I feel guilty and low. What can I do?

Tell a clinician or someone you trust how you feel. If you are thinking about hurting yourself, call your local emergency number first and then a crisis line where you live (988 is one example in the United States).

Once you are safe, the Daily check-in in Crohn's Journey records mood with the physical entries, so a clinician can see how they moved together, though it does not replace contact with help.

When should I get urgent help while caring for children?

Your team can tell you which changes need same-day care, which a general article cannot do. Ask them, write the answer in their words and keep it with the backup sheet so another adult can act on it.

The Flare Tracker in Crohn's Journey marks the day with onset, intensity and a short note, so whoever helps you can describe the day accurately to a clinician by phone, with its date and time.

Who should have a copy of the backup sheet?

Give a copy to the adults most likely to step in, such as a partner, a relative or a neighbor, and tell them where the original is kept. Review it with them when a number, a school time or a medicine changes.

Weekly Goals in Crohn's Journey can hold a small aim such as handing over the updated sheet this week, and marks whether it happened, so the copy that other adults hold stays current.

My teenager is worried about getting Crohn's. What can I do?

Answer the question honestly and keep the answer short. The Crohn's & Colitis UK sheet says older children may worry about this, and a clinician can explain what the family history means for your child.

My Care Team in Crohn's Journey keeps your clinicians' details and short visit notes, so you can add your teenager's question to the next appointment and write down the answer in the clinician's words.

How do I keep routines going during a flare?

Decide in advance which tasks are fixed, such as school drop-off and medicines, and which can wait. On the day, do the fixed ones, use the backup sheet for help and leave the rest.

The Flare Tracker in Crohn's Journey marks the day with onset, intensity and a short note, and the household line you add beside it shows later which routines held and which needed help.

How does privacy work for the health notes I keep?

A log can hold symptoms, medicines, moods and plans you may not want others to read. Decide who can see your phone, your notebook or any printout before you start writing.

In Crohn's Journey, the entries are your own health notes. The app's privacy policy explains how data is stored and handled, so read it before you add sensitive details. This article is general information and not medical advice.