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Bowel blockage and intussusception in children with Peutz-Jeghers | CION Cancer Clinics
In children with Peutz-Jeghers syndrome, a large polyp in the small bowel can pull one part of the bowel inside the next and block it. This is an emergency, and it is often how the syndrome is first found. This page explains the signs parents should act on the same day, what happens at the hospital, and how planned checks prevent most blockages. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- Why do children with Peutz-Jeghers get bowel blockages?
- What does a bowel blockage look like in a child?
- How do planned checks stop a blockage happening?
- The words you will meet, in plain language
- What this page cannot tell you
- Four things parents tell us, and what is actually true
- Common questions about bowel blockage in children
The short answer
Why do children with Peutz-Jeghers get bowel blockages?
Because a large polyp in the small bowel can be dragged forward by the bowel's normal squeezing, pulling one section of bowel inside the next. This is called intussusception, and it is an emergency. Planned checks that find and remove large polyps early are the best way to prevent it.
What actually happens inside the bowel
The bowel moves food along in waves. A polyp on a stalk gets caught in those waves like a weight on a string. It pulls the bowel wall with it, and the bowel folds into itself like a telescope. Food can no longer pass, and the folded section can lose its blood supply if it is not released.
Why it matters so much in childhood
In many children with the syndrome, a blockage is the first sign that anything is wrong. Some episodes release on their own and leave only a memory of bad tummy pain. Others need an operation. Each operation on the bowel makes the next one harder, which is why avoiding emergencies is the aim of every surveillance plan.
Children who have not yet been diagnosed but have dark spots on the lips and repeated tummy pain should be assessed.Signs to know
What does a bowel blockage look like in a child?
Parents are often the first to notice. These are the signs that should make you think of a blockage.
Pain that comes in waves
Sudden, severe cramping tummy pain that comes and goes every few minutes. A young child may cry inconsolably, pull the knees up, then seem settled between bouts.
Vomiting
Repeated vomiting, especially if it turns green or yellow-green. That colour suggests the bowel is blocked further down.
Also watch for
- Not passing stool or wind
- A swollen, hard or tender tummy
Blood in the stool
Dark red or jelly-like blood in the stool can come with a blockage. Black stools or steady small amounts of blood can also come from a polyp that is bleeding slowly.
A child who is pale and unusually sleepy
A child who is floppy, grey or hard to wake during an episode of pain is seriously unwell. Paleness and tiredness between episodes can also mean a low haemoglobin from slow bleeding.
Easily mistaken for
- Gastritis or a stomach bug
- Worms or constipation
- Pain made up to avoid school
Not sure whether this applies to you?
Ask an oncologistPrevention
How do planned checks stop a blockage happening?
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A baseline in childhood
Children with the syndrome, or who carry the family's gene fault, have their first gut checks in childhood, before most blockages happen. Your gastroenterologist will advise on timing.
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Looking at the small bowel
A pill-sized capsule camera or a special MRI scan of the bowel shows where the polyps are and how large they have grown. Neither needs an operation.
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Removing larger polyps on a planned day
Polyps big enough to cause a blockage are removed through a long camera tube called a balloon enteroscope, under sedation or anaesthetic. It is a planned procedure rather than an emergency.
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Repeating the checks
New polyps keep growing, so checks are repeated every few years, and sooner if symptoms appear.
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If surgery is ever needed
If a child does need an operation, surgeons often clear as many polyps as they can at the same time, so that another emergency is less likely.
On your child's report
The words you will meet, in plain language
- Intussusception
- One section of bowel sliding into the next, like a telescope. In this syndrome it is usually pulled by a polyp.
- Small bowel
- The long, narrow part of the gut between the stomach and the large bowel. Most polyps in this syndrome grow here.
- Capsule endoscopy
- Swallowing a pill-sized camera that photographs the small bowel as it passes through.
- MR enterography
- An MRI scan of the small bowel after drinking a special liquid. It uses no radiation.
- Balloon enteroscopy
- A long camera tube with a balloon that grips the bowel, letting the doctor reach deep into the small bowel and remove polyps.
- Laparotomy
- An open operation on the tummy, done when a blockage cannot be released any other way.
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One thing that cannot wait
If a child with Peutz-Jeghers syndrome has severe tummy pain that comes in waves, with vomiting, go to the nearest hospital with a children's surgeon the same day. Do not wait to see if it settles overnight, and do not travel a long way to your usual centre first. Tell the doctors the child has Peutz-Jeghers syndrome, and show them the latest gut check report, ideally saved on your phone.
Being straight with you
What this page cannot tell you
It cannot tell you whether your child's pain right now is a blockage. Only an examination and usually an ultrasound or scan can answer that. If you are unsure, it is always better to be seen and sent home than to wait at home.
It cannot set your child's check schedule
When the first check happens, how often it is repeated and which polyps are removed depend on your child's age, symptoms and past findings. Those decisions belong to the paediatric gastroenterologist. What a specific gene variant means is a question for the counsellor who ordered the test.
Who this does not apply to
Most tummy pain in children has nothing to do with this syndrome. Most children who have an intussusception do not have Peutz-Jeghers either. It is most often seen in babies and toddlers with no polyps at all. This page is for families where the syndrome is known or strongly suspected.
Studies in children with this syndrome are small, and the best timing for checks is based on expert agreement.Commonly believed
Four things parents tell us, and what is actually true
"The pain went away, so it was only gas."
A blockage can release on its own and come back later. In a child with this syndrome, repeated bouts of severe pain should be reported, even if each one settles.
"Our child is too young for camera tests."
Children's gut specialists do these tests routinely, with sedation or anaesthetic. Checking early is what prevents the emergency operation parents fear most.
"Once the polyps are cleared, there will be no more blockages."
New polyps keep forming through life. Clearing them lowers the risk for a while, which is why checks are repeated.
"An operation is the safest way to deal with polyps."
Repeated bowel operations leave scarring and can shorten the bowel. Removing polyps through a camera tube, on a planned day, is usually preferred.
Questions we are asked
Common questions about bowel blockage in children
How common are blockages in children with the syndrome?
They are one of the most common reasons children with Peutz-Jeghers syndrome come to hospital, and many have at least one episode before adulthood. Planned small-bowel checks and removal of larger polyps are designed to lower that risk.
How is a blockage diagnosed at the hospital?
The doctor examines the tummy and usually arranges an ultrasound, which can often show the folded bowel. A CT scan may be used if the picture is unclear. Blood tests check for bleeding and dehydration.
Can a blockage be treated without an operation?
Sometimes it releases on its own. In babies without polyps, an air or fluid enema can push the bowel back. In this syndrome, the polyp causing it usually needs removing, by camera where possible or by surgery if the bowel is at risk.
Will my child need repeated operations?
The aim of surveillance is to avoid that. Removing larger polyps on a planned day, through a camera tube, greatly reduces the need for emergency surgery. Keeping to the check schedule is the single most useful thing a family can do.
Is capsule endoscopy safe for children?
It is widely used in children who can swallow the capsule, and it can be placed with a camera in younger ones. There is a small chance the capsule gets stuck at a narrowing, which your doctor will explain.
Should brothers and sisters be tested?
If a parent carries the fault, each child has a one in two chance of inheriting it. Testing in childhood tells you which children need gut checks and which do not. A counsellor can arrange this for the whole family.
Can my child eat normally and play sport?
Yes. No special diet is needed and children should be encouraged to live normally. Iron-rich foods, and sometimes iron medicine, help if slow bleeding has lowered the haemoglobin. Report any tummy pain that is severe or keeps returning.
What should we keep ready at home?
A one-page summary of the diagnosis, the date and result of the last gut check, and the name of your child's specialist. Keep it on your phone and with school staff. Call the CION helpline if you need help finding a paediatric gut specialist.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- GeneReviews (NCBI Bookshelf) — Peutz-Jeghers Syndrome
- MedlinePlus Genetics — Peutz-Jeghers syndrome
- British Society of Gastroenterology / ACPGBI / UKCGG (Gut) — Guidelines for the management of hereditary colorectal cancer
- National Cancer Institute — Genetics of Colorectal Cancer (PDQ) – Health Professional Version
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
Small bowel surveillance and balloon enteroscopyHow the checks that prevent blockages actually workPeutz-Jeghers syndrome explainedThe whole condition, if the diagnosis is newLiving with Peutz-Jeghers from childhoodSchool, food and growing up with the syndromeWhich syndromes do require childhood testingWhy brothers and sisters are tested young
Talk to us
Worried about your child's gut checks or repeated tummy pain?
Tell us about your child's symptoms and past reports, and we will help you reach a paediatric gut specialist and a genetic counsellor. One helpline serves every CION centre.