Ileostomy and Internal Pouch Association, known as IA, is a registered charity supporting people living with an ileostomy or internal pouch, their families, friends and carers.Donate
Coronavirus (Covid-19) Information
We are continuously monitoring the situation, taking guidance from Public Health England (PHE) and the World Health Organisation (WHO), and are mindful of the concerns this raises for people with an ileostomy or internal pouch.
We are being asked many questions about this pandemic and having an ileostomy, and have created a series of FAQs below.
General Coronavirus FAQ
What are the symptoms of coronavirus?
If you think you are symptomatic, you can use the NHS 111 online symptom checker and get advice on what to do next.
The symptoms of coronavirus are:
- A high temperature – this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
- A new, continuous cough – this means coughing a lot for more than an hour, or three or more coughing episodes in 24 hours. If you usually have a cough, it may be worse than usual)
What should I do if I am showing symptoms?
If you develop symptoms associated with coronavirus, you should self-isolate and get in touch with the 111 online coronavirus service here: https://111.nhs.uk/covid-19.
How long should I stay in self-isolation?
If you are showing symptoms, stay at home for SEVEN days. However, if you live with other people they should stay home for FOURTEEN days from the day the first person showed symptoms. After 14 days, anyone living with you who does not have symptoms, can come out of self-isolation.
More detailed NHS advice on self-isolation and what this entails, can be found here: https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice
What can I do to lower my risk?
Everyone should do what they can to stop coronavirus spreading. It is particularly important for people who:
- Are 70 years or age or over
- Have a long term condition
- Are pregnant
- Have a weakened immune system
NHS advice is to:
- Wash your hands with soap and water often – do this for at least 20 seconds
- Always wash your hands when you get home or into work
- Use hand sanitiser gel if soap and water are not available
- Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
- Put used tissues in the bin immediately and wash your hands afterwards
- Avoid close contact with people who have symptoms of coronavirus
- Only travel on public transport if you need to
- Work from home, if you can
- Avoid social activities, such as going to pubs, restaurants, theatres and cinemas
- Avoid events with large groups of people
- Use phone, online services or apps to contact your GP surgery or other NHS Services
- DO NOT touch your eyes, nose or mouth if your hands are not clean
- DO NOT have visitors to your home, including friends and family
If you are worried about Coronavirus (Covid-19) the very latest information can be found on the Government or NHS England websites.
If you have concerns around your ileostomy or internal pouch, please contact the IA helpline on 0800 018 4724 or contact us via Facebook. Our teams will do their best to help as quickly as possible.
If I have worrying cancer symptoms, should I still present to my GP?
Yes. Whilst people are generally being advised to stay away from GP surgeries and A&E as much as possible during the Covid-19 outbreak, it is still important for you to present to your GP if you think you have symptoms of a cancer, such as a lump, pain, loss of appetite, loose bowel movements, or any change that is unusual for you and doesn’t go away. Spotting cancer early means treatment is more likely to be successful.
Do I need to wear a face mask out in public?
The government guidelines outline that it is wise to wear some form of face-covering for your nose and mouth when in situations where you could be in close contact with people you don’t know. For example, you might want to wear one while walking around the supermarket, where you could bump into someone or get closer than 2 metres. From 15 June, the government say you must wear a face covering while on any public transport.
The government guidelines are as follows:
“If you can, wear a face covering in enclosed public spaces where social distancing isn’t possible and where you will come into contact with people you do not normally meet. This is most relevant for short periods indoors in crowded areas, for example, on public transport or in some shops. From 15 June, you must wear a face covering on public transport. You should be prepared to remove your face covering if asked to do so by police officers and staff for the purposes of identification.
Evidence suggests that wearing a face covering does not protect you. However, if you are infected but have not yet developed symptoms, it may provide some protection for others you come into close contact with.”
IA are offering FREE #Iamstrong face masks with 3-layers, including one filter layer, for every member while stocks last.
**These do not count as PPE for use in clinical environments.
Covid-19 Air Travel Advice
The UK government have issued general advice for travelling, including travelling to or from other countries by plane.
Concerns have been raised by our members regarding hand luggage and whether it is permitted to taking any onboard a plane.
The government guidelines only suggest that people should minimise hand luggage, as opposed to forgoing the hand luggage all together. Of course, it is necessary for people with medical supplies to have some hand luggage.
IA and Coronavirus FAQ
How is IA affected?
IA have taken steps to ensure its staff and volunteers are following government social distancing guidelines. IA National Office are now operating from their homes and working remotely. The national office inbox is still being monitored and calls are still being received. However, we are on a reduced staff, so we appreciate your patience if you struggle to get through first time.
All social media channels are still operating and you are welcome to contact us on Twitter, Instagram or Facebook, and membership payments are still being taken through our website if you wish to join. Board meetings are taking place remotely via Zoom to ensure the charity continues to run and decisions are made in-keeping with social distancing rules. Our annual Information Day and AGM, due to take place at the end of March, was cancelled to ensure the safety of our staff and members.
On a local level, IA branches and affiliates around the country and in Northern Ireland have cancelled all group meetings until further notice. They will still be communicating via a newsletter in the IA Journal, which will be printed and distributed on schedule as normal.
Can dehydration or poor absorption through my ileum lower my immune system?
Nutrients from food are absorbed through the wall of the small intestine in the same way as before surgery (removal of the colon), so provided that any disease of the bowel, such as Crohn’s, is well-controlled by medication, and you have a varied diet, your nutrition (absorption) should not be affected. There may be an ‘increased risk of dehydration’ because you no longer have a colon, where water and salt used to be reabsorbed, but the remaining small intestine adapts in time to absorb what the body requires. It isn’t simply an issue of drinking more water – management of ‘hydration’ as well as the issue of a ‘high output stoma’ are addressed in our factsheet Staying Hydrated, available from National Office (0800 018 4724; firstname.lastname@example.org).
You can avoid anaemia by eating a varied diet that contains iron-rich food. For example, eggs, green vegetables, meat (including liver), beans and pulses, and dark chocolate (70% cocoa solids and over). But if you are concerned about your diet, you should discuss it with either your Stoma Care Nurse or dietician.
The immune system is responsible for protecting against and treating infection and is made up of many organs and processes in the body, including the spleen and white blood cells (lymphocytes). Our immunity is influenced by diet, sleep, exercise and stress, amongst other things. The bacteria in the gut (including the small intestine) also play a part, and these can be influenced by eating a healthy diet including fresh fruit and vegetables (to boost vitamin C and anti-oxidants), fibre and vitamin D (particularly in the Northern hemisphere winters where there is reduced sunshine). This can be found In oily fish (salmon, mackerel) liver, eggs, cheese, and fortified foods. Getting seven or eight hours sleep per night, exercising (within personal limits) and avoiding stress can also help. People taking immunosuppressant medication, e.g. for inflammatory bowel disease or chemotherapy, should take extra care to avoid contact with infection.
Am I at risk if I am taking immunosuppressive/immunomodulating medicine?
People taking immunosuppressive/immunomodulating medicines are considered ‘vulnerable’ or ‘high risk’, which means they are more likely to encounter severe infection or complications from Covid-19 if they are infected. If you become symptomatic of a Covid-19 infection, you may need to halt or adjust your medicines until your symptoms pass – however you must contact your GP or IBD specialist in the first instance to seek advice before doing so.
The IBD Registry and the British Society of Gastroenterology have created this excellent tool for people with IBD to assess their risk from Covid-19. This tool also helps them to gather information about how Covid-19 affects IBD patients. Click here to use the Covid-19 IBD UK tool.
Should I be requesting increased quantities of stoma supplies?
There is no need for you to do anything different when ordering or taking your medicines; continue with your ordinary repeat prescriptions. NHS England and the Department of Health have issued statements to reassure patients that it will be business as usual where your prescriptions and supplies are concerned.
The Department of Health have stated that there are no prescription medicine shortages as a result of Covid-19 and patients should order prescriptions and take their medicines as normal.
I haven’t received an NHS 12-week isolation letter but I think I’m high-risk
If you think you are at high risk, speak to your GP for advice about your particular health and circumstances. Everybody is different and there can be no one-size-fits-all when it comes to advice about who should take extra measures. It may be that you were missed and were intended to receive a letter, or it may be that there are particular reasons why you were not considered high-risk. If you decide to isolate for 12 weeks, please take a look at the government advice here, including advice for unpaid carers and links to register for extra support.
I’ve received my NHS 12-week isolation letter but I don’t think I’m high-risk
If you think you are in fact not under the high-risk or ‘extremely vulnerable’ category, then you should speak to your GP for advice about your particular health and circumstances. There may be very good reasons why you were identified as someone who needs to isolate for 12-weeks and the measures have been put in place to ensure your safety. However, if you think a mistake has been made then you must contact your GP for advice and guidance. Do not ignore your letter before querying it first or you could be putting yourself at significant risk. Take a look at the government advice here about isolating, including advice for unpaid carers and links to register for extra support, such as food parcels.
What if I have a problem with my stoma during lockdown?
If you start to develop skin irritation around your stoma, this could be a sign that your bag is leaking and you may need a different system. There are creams you can try from your stoma supply specialists to remedy the skin irritation. Call your stoma supplies company to speak to a stoma nurse who is familiar with your particular brand, OR call your NHS stoma nurse for advice.
If you have any pain or worrying symptoms, or if you think you may have a blockage or infection, contact NHS 111 for advice. DO still present to your GP if you have worrying symptoms.
The Stoma Care Self Help Guide
The Association of Stoma Care Nurses have supported IA to share an excellent resource to help you assess your stoma during lockdown, when you may not have access to a stoma care nurse.
The guide includes everything you need to identify issues with your stoma, such as bloating, bleeding, skin conditions or high output, with advice to remedy it yourself or to know when to seek further medical support.
This document can be used by both professionals and patients and is available for you to download here.
The Stoma Care Self Help Guide is endorsed by ASCN and created by Jenny Williams of Brighton and Sussex University Hospitals NHS Trust.
Reopening of public toilets
The reopening of public toilets is a local decision for councils who are following the Government’s guidance based on a risk assessment and whether social distancing measures can be maintained.
For the moment this means people are having to check with their own local council if public toilets are going to be open in their area. However, IA are continuing to lobby to ensure all Accessible toilets are opened by local councils for those with hidden disabilities as a priority.
For the moment, please contact your local council, or the local council for the area you are visiting, for advice and guidance about which public toilets will be available and when.