Teenager With Crohn's Disease: Toilet Anxiety, School and Friends

How does being a teenager with Crohn's disease affect toilet anxiety, school, friendships and family life? Practical suggestions for young people and parents.

Measuring with your eyes how far away the toilet is the moment you walk into the classroom. Skipping the school trip with the excuse "I feel sick". Sitting with friends in a café, smiling along with the conversation while listening to the stirring in your stomach. Being a teenager with Crohn's disease often means living in a state of alertness that is completely invisible from the outside. Inflammatory bowel diseases such as Crohn's disease and ulcerative colitis bring hard-to-discuss subjects like toilets, food and fatigue to the centre of life precisely in the years when a young person cares most about their body, their privacy and their place among their peers. In this article I look at the psychological load a young person carries, the difficulties in school and friendships, which family attitudes help and when it is time to seek support.

What Does a Teenager With Crohn's Disease Feel?

Crohn's disease is a chronic illness in which flare-ups and calm periods follow one another and whose course varies from person to person. A young person's mood often follows this fluctuation too. While life runs almost normally in calm periods, a flare-up can change every plan in an instant.

Feelings young people frequently describe include:

• Shame. Symptoms to do with the bowel and the toilet are among the hardest subjects to talk about in society. For a teenager, explaining this to friends, and sometimes even to family, can feel overwhelming.
• Anxiety about unpredictability. Thoughts such as "What if I can't hold it in class?" or "What if I get caught short on the school bus?" occupy the mind even when there are no symptoms.
• Fatigue and a sense of falling behind. The tiredness experienced during flare-ups makes studying, playing sport and joining in social activities harder.
• Body image worries. Weight changes, differences in growth and development or changes in appearance linked to treatment can affect a young person's relationship with the mirror.
• Anger and a sense of injustice. Thoughts such as "My friends eat whatever they want, and I think about every mouthful" can turn into anger that builds up inside.

All of these feelings are understandable responses to a real difficulty the young person is living with. Taking them seriously rather than shrinking them with "You're exaggerating" is the first step towards the young person not feeling alone.

Toilet Anxiety: An Invisible Load That Is Everywhere

For a teenager with Crohn's disease, toilet anxiety is one of the least discussed aspects of the illness, yet one that shapes daily life the most. Over time this anxiety can lead to behaviours such as:

• Being unable to relax in a new place without first finding out where the toilet is
• Avoiding long journeys and travelling by school bus or coach
• Not eating or drinking all day to avoid using crowded school toilets
• Turning down invitations from friends, weddings and class trips

Avoidance brings relief in the short term, but in the long term it makes anxiety grow and gradually shrinks the young person's world. Every activity avoided strengthens the belief "I can't do this" a little more.

Making the anxiety manageable

• Planning ahead is different from avoiding. Finding out where the toilet is at the place they are going, and carrying a small bag with spare clothes and wet wipes, reduces anxiety and makes it easier for the young person to go out.
• Expanding in small steps. Going to a shopping centre they have never been to, first for a short while with a trusted friend, then gradually staying longer, rebuilds a young person's self-confidence.
• Not turning signals from the body into catastrophes. Recognising that not every stirring in the stomach is a "crisis", and calming the body with breathing exercises, can help.

I have also written about how stress and anxiety can affect the digestive system in the article on anxiety and the gut. An important distinction needs emphasising here: stress does not cause Crohn's disease; but the anxiety that comes with living with the illness can affect how a young person experiences their symptoms and their daily life. For every change in symptoms, the doctor overseeing treatment should be consulted.

A Teenager With Crohn's Disease and School Life

School is a place for both learning and socialising. For a teenager with Crohn's disease, the situations that are hardest at school include:

• Having to ask permission to go to the toilet during lessons and explain themselves every time
• Missing school frequently during flare-ups and being unable to keep up with lessons
• Struggling in PE lessons because of fatigue
• Worrying that the need for the toilet will arise during long exams such as the LGS or YKS (Turkey's national high-school and university entrance exams)

Working with the school

With the young person's consent, a short meeting with the school management, the school counsellor and the class teacher can prevent many problems. Simply knowing that the teacher is aware they can leave for the toilet without explaining provides great relief. In some schools a card the young person can show quietly, or a pre-agreed signal, can be used. Consulting the school management and the relevant institution in advance about official arrangements for toilet needs during exams and documents relating to their health reduces anxiety.

Worry about absences and falling behind

Being unable to go to school during flare-ups can cut a young person off both from lessons and from what is happening in the class. Noticing on returning after a few weeks that friendship groups have changed and that jokes they don't know are going round the classroom can be as tiring as the gap in learning. During this period it helps when a classmate shares their lesson notes, teachers send homework online and the young person keeps up some connection with the class, however small. Rather than the family saying "Grades don't matter this year" or, on the contrary, pushing "You have to close the gap right away", building a realistic catch-up plan together with the young person is a more balanced approach. Adjusting goals to the course of the illness is not failure but a sensible adaptation.

What matters is that the young person can decide for themselves whom at school to tell about their illness, and how much. The family informing the whole class or the parents' group without the young person knowing can damage their privacy.

Friendships: To Tell or to Keep It Private?

One of the biggest questions for a teenager with Crohn's disease is whether to tell friends about their illness. There is no single answer to this question that is right for everyone.

Some young people choose to tell only one or two close friends. These friends can become allies who back them up when they ask for a toilet stop on a school trip and help them deflect questions such as "Why aren't you eating?" Other young people prefer to keep their illness private for a long time. The weight of keeping it secret can grow over time, because constantly coming up with excuses makes real closeness harder.

You can suggest that the young person think through these questions together with you: "Whom do I trust?", "How much do I want to tell?", "What reaction do I expect when I tell them?" It also helps for young people to prepare their own sentences. A few fictional examples:

• "I've got an illness to do with my bowel. It isn't catching. Sometimes I suddenly need to go to the toilet."
• "Some foods upset me, so I'm a bit choosy when I look at the menu."
• "I'm really tired today because of my illness. Shall we go to the cinema another day?"

Social situations that revolve around food are a separate challenge. A birthday cake, the kebab shop everyone goes to after school, the iftar table in the neighbourhood, or the sweets pressed on you during a religious holiday… Facing the question "Why aren't you eating?" every time can be exhausting for a young person. Preparing a short answer that needs no explanation ("I'm not hungry right now, I'll eat later"), or a trusted friend changing the subject, can ease these moments. Constantly seeing posts about food and trips on social media can also strengthen a young person's feeling that "everyone is living their life and I'm missing out"; it is important to make room to talk about this feeling.

Peers' reactions are usually more understanding than the young person fears. But if there is teasing or exclusion, it needs to be said clearly that this is the problem of the person doing the teasing, not of the young person, and to work with the school if necessary.

The Family's Attitude: What to Say and What Not to Say

Families often act with good intentions but out of anxiety. This anxiety can sometimes turn into a protectiveness that restricts the young person's autonomy. In adolescence, the need for independence is high; illness does not remove this need, it only makes it more complicated.

Sentences you may want to avoid saying to the young person (fictional examples):

• "Are you going to the toilet again?" (Questioning symptoms deepens shame.)
• "Didn't I tell you not to eat that? You brought it on yourself." (Blame puts further strain on the young person's relationship with food.)
• "You're ill; you can't go on this trip." (Making the decision for them breeds anger and rebellion.)
• "Don't tell anyone, it's embarrassing." (It presents the illness as a shameful secret.)

Sentences you could try saying:

• "What would make you feel more comfortable on this trip? Shall we plan it together?"
• "It looks like you've had a hard day. If you want to talk, I'm here, and if you don't, I understand."
• "How much you tell your friends is entirely your decision."
• "Would you like to do part of the appointment with the doctor on your own?"

If the family uses constantly controlling language about food, the dinner table can turn into a place of tension. Clarifying medical advice on nutrition with the treatment team and a dietitian makes it easier for the family to step out of the role of "food police". Giving siblings age-appropriate information about the young person's illness also reduces jealousy at home, such as "They're allowed everything".

For a young person with a chronic illness, the most valuable support is the kind that makes them feel they own their life, not their illness.

A short note on age

Crohn's disease sometimes appears in the primary school years and sometimes at university age. With a young child, the illness is expected to be explained in short, age-appropriate terms and control largely handled by the family, while in adolescence it is important to hand responsibility over to the young person step by step. In young adulthood, new transitions such as moving from a children's hospital to an adult clinic, or living in halls or with housemates, can bring new worries.

When Should You Seek Professional Support?

A teenager with Crohn's disease will sometimes feel sad, angry or anxious; this is often to be expected. However, the following signs suggest that support from a mental health professional may be helpful:

• Refusing to go to school for a long time, or a marked increase in absences
• Withdrawing completely from friends and activities they used to enjoy
• Their relationship with food becoming extremely restrictive, with intense worry about weight and body
• Disrupted sleep, constant unhappiness or hopelessness
• Constantly missing treatment and check-ups

If the young person says they want to die, harms themselves or talks about thoughts of ending their life, take it seriously; in an emergency call 112 (emergency services) or go to the nearest emergency department. If depressive symptoms are marked, an assessment by a psychiatrist may also be important.

How Is Living With Crohn's Disease Addressed in Therapy?

Psychological support does not replace the medical treatment of Crohn's disease, but it can help the young person work through their feelings about living with the illness and widen their life again.

Within a cognitive behavioural therapy framework, frequently addressed topics include working with toilet anxiety, gradually reducing avoidance behaviours, questioning catastrophic scenarios and interpreting body signals more calmly. Shame and body image are also important themes in therapy; for a general framework on this, you can take a look at the article on body image.

In the course of teen counselling, the young person can work on positioning their illness as part of their identity but not the whole of it, expressing themselves to friends and teachers, and discussing boundaries with the family. Where appropriate, joint sessions with the family help to soften communication at home. For young people who find it hard to leave home during flare-ups, sessions can also continue online.

Frequently Asked Questions

Is Crohn's disease caused by stress?

No, stress is not the cause of Crohn's disease. However, the stress and anxiety created by living with the illness can affect how a young person feels and their daily life. That is why it helps to value emotional support alongside medical treatment.

My teenager wants to hide their illness from friends. Should I allow this?

This decision belongs first and foremost to the young person. You can talk through the possible consequences of keeping it private and of telling, and help them consider whether having at least one trusted friend know might make things easier. Pushing usually backfires.

What can we do about school trips and camps?

Start by asking whether the young person wants to go. If they are going, planning together the stops along the route, the toilet facilities and the emergency bag they will carry reduces anxiety for both the young person and the family. It is also important to consult the doctor in advance about health-related questions.

What should we tell the siblings of a teenager with Crohn's disease?

It is good to give siblings a short, honest explanation suited to their age. Knowing that the illness is not catching, and why their older brother or sister does some things differently, reduces both siblings' worries and their jealousy.

• #crohn's disease
• #ulcerative colitis
• #teenagers and chronic illness
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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