Stoma Care – follow up care after your stoma surgery

  • Reference Number: HEY1042/2019
  • Departments: Colorectal Surgery

Introduction

This leaflet has been produced to give you general information about the stoma service, discharge information and the care you can expect after your stoma surgery.

Most of your questions should be answered by this leaflet.  It is not intended to replace the discussion between you and your Stoma Nurse, but may act as a starting point for discussion.   If, after reading it, you have any concerns or require further explanation, please discuss this with a member of the Stoma team.

Please read the information leaflet.  Share the information it contains with your partner and family (if you wish) so that they can be of help and support.  There may be information they need to know, especially if they are taking care of you following your stoma surgery.

Who are the Stoma Care Team?

Clinical Nurse Specialists:

Jill Marshall

Jane Thacker

James Gridley

Lesley Morris

Rhian Simmons

Rachael Walby

Secretary: Carolyn Pearson

The Stoma Care Team offer pre-operative information, education and counselling for adult stoma and ileo-anal pouch patients. We provide teaching, education and support whilst in hospital and this continues following discharge with telephone contact, community visits and nurse led clinics. The Clinical Nurse Specialists also provide teaching to families, carers, and other healthcare professions both in hospital and in the community.

How to contact the Stoma Care Team

Stoma Care Department

The Poppy Suite

Entrance 2

Castle Hill Hospital

HU16 5JQ

Telephone: (01482) 624026 (answering machine)

Fax: 01482 622371

Email: surgstomacare@hey.nhs.uk

Our working hours are 8.00am – 4.00pm Monday – Friday (excluding bank holidays).

We are frequently working out of the office therefore we operate an answering machine service.  Please leave a message with your name, contact details and a brief explanation of your reason for calling.  We will return your call based on a triage of urgency, and try to answer the same day.  Messages left after 2.00pm may not be answered until the next working day.

Out of hour’s emergency advice

If you require emergency advice out of hours please contact your doctor, dial NHS 111, or attend your nearest walk-in centre or Emergency Department.

Obtaining emergency stoma supplies

If you have had problems obtaining your usual supplies and require assistance, we can be contacted by telephone during working hours.  For urgent out of hours, you will be able to collect a small supply of pouches from either wards 10 or 11 at Castle Hill Hospital or Ward 60 at Hull Royal Infirmary.  Please note their stock is limited and they may not have your specific product but can give you an alternative.  Please contact the ward in advance via hospital switchboard Telephone (01482) 875875.

Other useful contacts

Colostomy UK                                      Stomawise

Freephone: 0800 328 4257            www.stomawise.co.uk

www.colostomyuk.org

The Ileostomy and Internal Pouch Support Group

Freephone: 0800 0184724 www.iasupport.org

After your Stoma Surgery

Home visits

You will be offered up to 3 home visits (usually 1 per week) to help you to adjust with managing your stoma. The Stoma nurse will want to look at your stoma and surrounding skin to make sure that it is healing.  The visits will also give you the opportunity to discuss any issues or concerns.  Please be aware that home visits may potentially be affected by adverse weather conditions. We are unable to give you a specific time for your visit but they are generally between 8:30am-2.00pm.

We ask you please refrain from smoking during our visits so that there is a smoke free environment for us to work in, as per our hospital policy.

Home visits to patients who have not recently had stoma surgery will be strictly limited to those who are housebound due to medical conditions, or are in nursing and residential care.

Clinics

Following the home visits, unless you have a specific problem, you will be offered routine Nurse led clinic reviews at 1 month. 3 months, 6 months and annual review.

Please bring a spare supply of your usual stoma products to your clinic appointment.

When to contact us

If you experience any problems or would like advice or a clinic appointment, please do not hesitate to contact us.

It is important to contact a Stoma nurse as soon as possible if you have sore skin or leakages so that we can give you advice and try to find a resolution before the problem worsens.  You should contact a Stoma nurse if you experience loose/watery stools which you cannot resolve yourself with dietary changes, or you experience blockage symptoms (inactive or reduced stoma output, abdominal pain and vomiting).

Bleeding

It is normal for stomas to surface bleed, particularly during cleaning.  The bleeding should usually cease quickly; however, if you notice the blood coming from within the stoma, or blood is collecting in the pouch you should inform your Stoma nurse or General Practitioner.

Enlarged stoma / prolapse

There is a small chance your stoma will change size or become enlarged.  Try not to worry, but make sure your stoma remains pink, warm and functioning.  You may need to cut the opening of your pouches larger to fit the stoma in.  You can contact the Stoma department for advice.  If the stoma changes colour (appears pale or blue), becomes cool to the touch or stops working, you should attend your Accident and Emergency department immediately for assessment.

Rectal discharge

If your rectum has not been removed you may experience a rectal discharge.  It is usually a clear mucous/jelly like substance which is produced by the bowel to allow easier passage of the stools.  You may occasionally feel the urge to pass this discharge.   Try sitting on the toilet, if you see blood or are unable to pass anything please inform a Stoma nurse or your doctor.

If you have a ‘loop’ stoma, due to the way it is created there will be two openings.  Sometimes stool can flow into the opening which is still connected to your bottom resulting in you occasionally having your bowels open in the normal way.

Prescription for Stoma Supplies

Upon discharge from hospital you will be provided with supplies by your Stoma nurse.  Once you and your stoma nurse are happy with the stoma products you are using, your prescription will be arranged with your doctor. There are two options available for you to obtain your stoma supplies: a home delivery service or a chemist of your choice.

Home delivery service

This is a free service provided by healthcare companies, there are a number to choose from and your Stoma nurse will register and set up your initial prescription.  The delivery service will request your prescription directly from your GP on your behalf.  They provide soft wipes (for cleaning your stoma) and disposal bags for free, and will also provide a cutting service for you to have your pouches pre-cut to size.  The companies do not send your supplies as a standing order every month therefore you will need to ring or order online when you require a new supply.

Please note that some doctor’s surgeries will not send your prescription directly to a delivery company, this would require you to collect the prescription and then send to the company yourself (usually in a prepaid envelope).

Chemist

You can use any chemist you wish, your doctor may be able to send your prescription to the chemist electronically.  The chemist will order the supplies ready for your collection.  Many chemists will provide a free delivery service but you will need to check.  A chemist cannot provide a cutting service, so you would need to cut your own pouches to size.

It is recommended to use one chemist as they will keep a record of your regular prescriptions.  You will need to ask for soft wipes and disposal bags.  Alternatively kitchen roll and nappy sacks will be acceptable.

General prescription advice

When re-ordering, you should always try to keep a two week supply of your stoma products as sometimes it may take a week for your prescription to be processed.  This is especially important around bank holiday times.  You will be prescribed a month’s supply of products; however some items may not be required as frequently, therefore you should only order these items as needed.  If you are running out of stock early please see a Stoma Nurse for review, as it may be that you have an issue such as leakages or sore skin which they can help with.

It is advisable to carry a ‘spare kit’ with you for any pouch changes required when away from home.  Try to store your supplies in a cool dry area away from direct sunlight.  Extremes of temperatures can damage the adhesives used in the products, products left in a hot / cold car may not stick as usual.

If you are planning a trip away, your Stoma nurse can give you advice and a travel certificate if you are travelling abroad.

Your stoma will change size and shape over its lifetime, you can check the template sizing remains correct by using the size guide/measuring tool found in each box of stoma pouches.  A Stoma nurse can show you how to do this, but if you find it difficult please contact the Stoma department to arrange a clinic review.

If your stoma was formed because of a cancer diagnosis or is permanent, you will not be required to pay prescription charges.  You can obtain an exemption certificate (FP92A) from your GP or Stoma Nurse.  If you pay for your prescriptions it is recommended that you purchase a prepayment certificate.

Your stoma prescriptions may be periodically reviewed by your GP practice or Stoma team to ensure that they continue to meet your needs.  Any new products can only be prescribed following a clinical review and with communication between your GP and Stoma team.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Stoma Department Telephone (01482) 624026

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.