FAQs

Polyposis means having more polyps than usual in the digestive system, usually in the bowel or stomach. Most polyps are harmless, but some can turn into cancer if not removed. In polyposis syndromes, many polyps develop because of an inherited gene difference.

No — polyposis syndromes are rare. Most people will never be affected. However, for those who do have a syndrome, regular check-ups are very important.

Each polyposis syndrome increases the risk of cancer, especially bowel cancer. Some also increase the risk of cancers in other parts of the body. The good news is that with regular monitoring, treatment, and sometimes surgery, many cancers can be prevented or caught early.

It depends on the condition:

• SPS inheritance is less clear, but close family members may still need checks.
• Some (like FAP, JPS, and PJS) are dominant, meaning each child of an affected parent has a 50% chance of inheriting it.
• MAP is recessive, which means a child only develops the condition if they inherit a gene difference from both parents.

Not necessarily. The risk depends on which syndrome you have and how it is inherited. A genetic counsellor can explain what this means for your family and discuss options if you are planning children.

Diagnosis usually involves:

• Family history review if relatives have had polyps or cancer at a young age
• Colonoscopy or endoscopy (camera tests) to check for polyps
• Genetic testing to look for gene differences

Treatment often includes:

• Regular colonoscopies to remove polyps
• Monitoring for related cancers
• Surgery in some cases if there are too many polyps to manage safely

Not everyone will need surgery. It depends on how many polyps are found and how easy they are to remove. If surgery is needed, your care team will discuss the best option for you.

This varies by condition and your personal situation. Some people may need yearly colonoscopies, while others may have them every few years. Your specialist team will make a plan tailored for you.

Yes. While the condition means extra medical care and sometimes surgery, many people live full, active lives — studying, working, travelling, and raising families. With the right support, you can thrive.

Lifestyle cannot change your genes, but healthy choices support your overall wellbeing:

• Eat a balanced diet rich in fruit, vegetables, and fibre
• Stay active
• Avoid smoking and limit alcohol
• Keep up with your screening appointments

Because these conditions are rare, many GPs may not have seen a patient with one before. Your GP is still an important part of your care team, but your hospital specialists will usually lead on condition-specific advice.

After bowel surgery, digestion can change. Some foods may upset your tummy or cause loose output. Reintroduce foods slowly, keep a food diary, and ask for dietitian support. Many people eventually eat a wide variety of foods again.

Yes. Once you have recovered, most people can return to sport. Exercise helps with strength and wellbeing. Your surgeon or nurse can advise on when to restart and if you need any limits.

Yes. Many people with a stoma work, travel, play sport, and live active lives. It takes adjustment, but stoma nurses and support groups can help with confidence and practical tips.

Yes. With preparation (extra supplies, travel certificates, and planning for airports), most people travel widely and without problems.

Yes, especially after surgery. Most people return to work, sometimes with adjustments or a gradual return.

After bowel surgery, the body may not absorb fluids well, especially with an ileostomy or pouch. Plain water often passes through quickly. Try sipping fluids regularly, using oral rehydration solutions, and asking your nurse or dietitian for advice. You can also try our E-mix recipe which is specially formulated to help – click here.

This is common. Eating smaller meals, chewing thoroughly, and avoiding fizzy drinks can help. It usually improves as your pouch settles.

Sometimes surgery affects confidence, body image, or physical comfort. With time, reassurance, and sometimes small adjustments, most people return to a fulfilling sex life.

These feelings are normal. Coping strategies include:

• Talking to a counsellor or nurse
• Connecting with others who share your experience
• Keeping a journal

Allowing yourself to grieve while recognising your strength

It takes time. Many people rebuild confidence by returning to activities they enjoy, sharing feelings, and seeking professional help if needed. Your condition does not define you — it is only one part of you.

Stress does not create polyps, but it can affect digestion and wellbeing. Relaxation, exercise, and talking therapies can help.

St Marks Hospital – the UK specialists on Polyposis Syndromes https://www.stmarkshospital.nhs.uk

Bowel Cancer UK – hereditary syndromes information  https://www.bowelcanceruk.org.uk

Genetic Alliance UK – support for genetic conditions
https://geneticalliance.org.uk

Macmillan Cancer Support – practical and emotional support  https://www.macmillan.org.uk

Ask your hospital about local support groups and genetic counselling