Considering that around 205 000 people in the UK have a stoma (Hodges, 2022), the Stoma Care Nurse Specialist’s (SCNS) role remains vital. Not only does the SCNS need to show compassion, but also provide individualised patient care from pre-operative counselling, to continuing long-term community support.
An experienced SCNS will have the knowledge to recognise stomal complications and the expertise to resolve the issues, while supporting the ostomate with what may be a painful or distressing issue.
The ostomate may encounter many complications during their journey with a stoma, including sore skin, high output, prolapse, parastomal hernia, granulomas, stenosis and retraction, to name a few. Sore peristomal skin can result in a diminished adherence of the stoma appliance, resulting in leakages. Experiencing complications can affect the ostomate’s quality of life (Salvadalena et al, 2020). Although it is normal for an ostomate to see some blood when cleaning the stoma, this should be minimal. Hill (2020) describes luminal bleeding as a potential result of inflammatory bowel disease (IBD), or portal hypertension in patients with liver disease, which may result in caput medusae around the stoma. Caput medusae is a term derived from the Greek myth of Medusa, whose head of hair was made of snakes.
When portal blood cannot enter the liver, it creates a backflow into the portal vein causing portal hypertension. This backflow results in parastomal varices, umbilical varices or oesophageal varices. Varices are the most common clinical symptom of portal hypertension, despite the occurrence varying from 24% to 80% (Frigiolin, 2021).
Caput medusa can initially be mistaken for bruising or discolouration around the stoma. However, the discolouration is actually a collection of small-distended varicose veins. Moreover, these bulging varicose veins allow the peristomal skin to become fragile with the danger of massive blood loss. About 50% of ostomates with portal hypertension will experience parastomal varices, with a 25% chance of recurrence within 2 years and a 5% chance of exsanguination (Cartwright, 2002). The principal cause of death in patients with portal hypertension is undeniably, bleeding from ruptured varices (Frigiolin, 2021).
The initial treatment plan would be to attempt to stop the bleeding by applying a cold compress to the area and pressure. If this is unsuccessful, then the patient will require cauterisation with topical haemostatic agents, suture ligation or sclerotherapy (Coleman, 2020).
Case study
David (name of the patient changed for the purpose of this case study; permission granted by patient to use him for this case study), a 63-year-old man, was diagnosed with ulcerative colitis in November 1997 at the age of 38, and treated with medication over a period of 5 years in an effort to control the condition. The medication prescribed included: azacol, prednisolone, predsol enema, olsalazine and azathioprine at various times. He stated that during this period, he was never really ill or unwell from the colitis, other than from the side-effects of the medication, and suffering from loose bowel movements several times a day. He managed to lead a normal active life inclusive of playing sport, and never lost any time from work because of the condition.
Regular review of bloods were required over the years, to ensure that the medication for the IBD was not having an adverse effect on his other organs. In April 2001, it was noted that his liver function tests were deranged, which subsequently meant the discontinuation of the medication that had reduced inflammation in the bowel. Over the next few months, David noted that his bowel movements gradually increased and became more frequent and he found himself having to ensure that he was never too far away from a toilet. Despite this, he continued to lead a relatively normal life.
In October 2001, his condition became steadily worse and for the first time, he started to feel that life was becoming a struggle. His symptoms included weight loss and lethargy, and his work began to suffer as it became difficult to concentrate and he began to miss days through illness. His personal life began to suffer as he became irritable and ‘hard to live with’.
As there was no improvement in his condition, following an appointment with the local gastroenterology team, he was informed that surgery was likely. He remained reluctant to have his ‘colon removed, and the possibility of a bag to catch waste products’. He believed that having a stoma meant that he would be unable to continue playing football, go swimming, go to the beach with his family, and also felt that this would make him unattractive to his wife. David felt that he ‘was not ready to sit in the corner and not take part in life’.
David’s condition continued to deteriorate as he was unable to work, had suffered dramatic weight loss (two stone in two weeks) and anaemia. His quality of life began to deteriorate, he was struggling to get out of bed and was reluctant to eat as this was causing abdominal pain and loose stools. David was admitted to hospital for blood transfusions and steroid therapy. Unfortunately, he developed a deep vein thrombosis. Despite treatment, his condition deteriorated with pain, which was now excruciating and almost unbearable.
A decision was made to transfer him to a specialist unit where a total colectomy was performed. David stated:
‘I was in so much pain, I would have begged them to do it’.
Following the surgery, he noticed that the ‘excruciating pain from going to the toilet had stopped’; this led to an acceptance and positivity toward the stoma.
David was informed that the ulcerative colitis was most likely caused by my auto-immune system, which has caused a liver issue and a recent diagnosis of Parkinson’s disease.
In 2016, David was admitted to hospital with an acute massive upper gastrointestinal bleed, secondary to oesophageal varices. A magnetic resonance cholangiopancreatography was performed and showed primary sclerosing cholangitis with multiple varices around the splenic hilum and gastro-oesophageal junction and portal vein thrombosis.
Thrombocytopenia and splenomegaly
In July 2018, David contacted his stoma care nurse as he had concerns about sore peristomal skin. His stoma was pink and healthy and measured 30 mm. The peristomal skin was bluish/grey and nobbly for around 2 cm circumferentially around the stoma. David explained that he was suffering frequent leaks from his stoma appliance. In view of his history of primary sclerosing cholangitis, the SCNS contacted the local hepatologist to discuss her concerns that it was caput medusa. His response was that caput medusa was usually seen around the umbilical area. The SCNS contacted Dr Callum Lyon, a consultant dermatologist with a special interest in skin lesions, including cancer, skin surgery and stoma dermatology. Dr Lyon stated that it was almost certainly caput medusa (Figure 1). He suggested that surgery to the skin was not recommended, as the bleeding could be torrential. The SCNS advised David of the diagnoses and to be very gentle with the peristomal skin. He was also advised to seek urgent medical help should, there be any bleeding.
In January 2023, David contacted the SCNS again to say the caput medusa was more raised and lumpy and tender to touch. On examination, the SCNS noted that the stoma was pink and healthy and the caput medusa was indeed more raised and lumpy. There were no signs of bleeding from the skin or in the stoma output. Reassurance was given to David and the SCNS explained that she would liaise with the hepatologist and colorectal surgeons again. David was advised to attend the emergency department if he noticed any bleeding from the area.
Conclusion
Education of the ostomate is ongoing throughout their journey with a stoma. It is vital that ostomates are observant and notice changes to their peristomal skin, so they can either contact their SCNS or resolve the issue themselves immediately. Although a small amount of bleeding from the stoma is a common occurrence, this risk of perfuse bleeding is rare and there is very little literature on this. Healthcare professionals need to be educated and regularly updated on how to deal with such adverse issues and manage different types and causes of bleeding from the stoma. The SCNS can disseminate information on stoma care and its common complications to nurses in primary care by performing joint visits and providing appropriate training. Daily stoma care is a personal care task and does not require the input from a SCNS; however, the community nurse is conveniently located to have input, should the ostomate experience complications. Community nurses have a wealth of knowledge and often have a wide range of experience, as there is often no limit to the conditions that housebound patients suffer from.