Despite around 200,000 people in the UK and millions more worldwide having a stoma, they are still widely misunderstood in society. For example, people often think that only elderly people have them. The truth is that anyone of any age may have a stoma bag to treat a range of problems. So why would you need a stoma bag? What are the reasons for a stoma?
In this guide, we will explore 10 reasons for a stoma bag.
Click below to skip directly to a section of the guide:
What is a stoma?
A stoma is an opening on the abdomen surgically created to divert waste from the body when people are struggling to pass waste in the ‘usual’ way. The waste – either faeces or urine – collects into a pouch known as a stoma bag. People with a stoma, known as ‘ostomates’, cannot control when their stoma is active, so the stoma bag stays in place all the time. Find out more: What is a stoma?
Why would you need a stoma bag?
There are lots of reasons that can cause the need for a stoma bag which we will discuss below. Stoma surgery can be planned or unplanned. It may be elective due to debilitating pain or incontinence, or planned in advance to treat a worsening disease such as cancer. On the other hand, unplanned stomas can also be formed in emergencies.
The reasons for surgery are extremely varied, and the conditions on this list do not always require stoma surgery.
10 reasons for a stoma bag
Let’s explore the answer to ‘Why would you need a stoma bag?’.
1. Cancer
One of the most common reasons for a stoma is cancer. Many types of cancer may result in stoma surgery and below we list some of them.
Bowel cancer
People with bowel cancer (including the colon and the rectum) may need to have part or all of their bowel removed (called a colectomy) to treat the cancer and help prevent it from returning. The surgery could then include reattaching the bowel back together or bringing part of the bowel out to form a stoma. This could be temporary to allow the bowel to rest and heal before being reversed. However, if there is not enough healthy bowel left to reconnect to (for example if the cancer is very low in the rectum), or the patient decides they would prefer to keep their stoma (this may be because their quality of life has improved or they want to avoid further surgery), it will be permanent. Find out more here.
Anal cancer
Anal cancer is treated in a variety of different ways, from chemotherapy and cutting-edge immunotherapy to surgery, either to remove the cancer and/or form a stoma. All of the anus, rectum and part of the bowel may be removed, resulting in a colostomy. Find out more here.
Bladder cancer
Sometimes a urostomy (a stoma to divert urine) is created in the treatment of high-risk bladder cancer after the bladder has been removed. Urostomies are not reversible. Find out more here.
Ovarian cancer
If ovarian cancer is more advanced, it may spread to the surface of the bowel, in which case the affected parts may need to be removed. Like in the treatment for bowel cancer, the affected area can be removed and the two ends joined back together, but if this isn’t possible, a stoma will be formed. Find out more here.
Other pelvic cancers
Similarly, other types of pelvic cancers may require a stoma to be formed because of their close proximity to the bowels. This includes prostate cancer, cervical cancer and womb cancer.
FAP
While not a form of cancer, Familial Adenomatous Polyposis (FAP) and its milder form Attenuated Familial Adenomatous Polyposis (AFAP) cause a high risk of bowel cancer developing. They are rare genetic disorders that cause hundreds or even thousands of polyps inside the colon or rectum. Early detection via colonoscopies and DNA testing, and then removing some or all of the colon and the rectum, is key to preventing the polyps from developing into cancer.
Read the story of Dan, an AFAP survivor
2. Inflammatory bowel disease
Another common reason for a stoma is inflammatory bowel disease (IBD). IBD is a painful condition that causes the digestive system to become inflamed. There are two main types; Crohn’s disease and ulcerative colitis. Crohn’s disease can cause any part of the digestive tract to be irritated. Ulcerative colitis causes small ulcers on the colon’s lining.
In severe cases, surgery may be needed to either give a diseased section of the bowel time to heal or to remove it altogether. IBD can cause diarrhoea, bleeding, urgency, abdominal pain and fatigue – which is why some people with this condition opt for stoma surgery.
3. Diverticulitis/diverticular disease
Diverticular disease is when small pouches in the intestine cause painful abdominal symptoms. If these become inflamed or infected, it’s called diverticulitis. Sometimes, diverticulitis can lead to serious complications, such as blockages or perforations, which may result in the need for colostomy surgery. Find out more here.
4. Endometriosis
Endometriosis is when the endometrial tissue of the uterus grows outside of it. In rare cases, this tissue can occur in the large or small intestine (either outside or inside the bowel wall), causing difficult symptoms. This may require the part of the affected bowel to be removed and a stoma formed to allow the bowel to heal. Read more in this article from Endometriosis UK.
5. Fowler’s syndrome
Fowler’s syndrome is a rare condition that causes urinary retention in young women because the urethral sphincter is unable to relax. Surgery to remove the bladder (cystectomy) with a urostomy may be the best treatment option for some patients. Find out more here.
6. Bladder pain syndrome
Bladder pain syndrome (BPS), also known as interstitial cystitis, is a condition that causes trouble urinating and pelvic pain. It is difficult to diagnose and the cause is unknown. In rare cases, the bladder may be removed and a urostomy formed. Find out more here.
7. Hirschsprung’s disease
Hirschsprung’s disease is a rare condition mainly found in very young children. The nerves that push faeces along are missing from a section of the bowel, causing it to build up. This causes severe constipation and can lead to serious infections. The child may have a temporary stoma formed to enable their bowel to function properly and heal. Find out more here.
8. Birth defects
Other problems can be present in babies at birth that may result in a temporary or permanent stoma to give them the best chance of living a full and healthy life. This includes anorectal malformation, malrotation and volvulus.
9. Emergency surgery
Emergency surgery to form a temporary or permanent stoma can be used in a variety of situations to give the patient the best chance at survival and a high quality of life. For example, this could be due to abdominal trauma caused by a serious injury. Rarely, stomas may also be formed during another medical procedure if something goes wrong – such as during childbirth.
10. Incontinence
There are a range of conditions which can lead to incontinence (being unable to control when you go to the toilet). People who have a stoma do not feel the urge to go and their stoma bag fills up as they are going about their day-to-day life. They empty it either when it is full or when suits them. This can be much easier to manage for people who are struggling with incontinence, leading to an improved quality of life.
Incontinence could be caused by spina bifida, multiple sclerosis, dementia, Parkinson’s disease, Ehlers-Danlos syndromes and more.
Stoma resources
In conclusion, there are many different reasons you would need a stoma bag, and every ostomate has a unique journey. If you have recently found out that you need stoma surgery, or think you may in the future, there are many resources available to help, including:
Ileostomy and Internal Pouch Association
Further reading
5 inspirational women with stomas (& their advice)
10 celebrities with a stoma bag
Although all our articles are written alongside qualified medical professionals, this information is for guidance only and does not replace advice given by your healthcare advisors.
