When we discuss ostomies in this post, we will be referring to either an ileostomy, colostomy or urostomy.
- An ileostomy - where part of the small intestine is diverted through an opening in the abdomen (a "stoma" is formed).
- A colostomy - where part of the large intestine (colon) is diverted through an opening in the abdomen (a "stoma" is formed).
- A urostomy - is formed in an operation to remove the bladder. To make a urostomy, the surgeon removes part of your small bowel (ileum) and joins the two ureters to one end of it. They bring the other open end of your bowel out through a small opening in the skin of your tummy. The opening is called a stoma. Urine now leaves the body this way. (Reference to Macmillan).
Why is an ostomy formed?
There are a number of reasons that can lead to an ostomy of the above criteria being formed. These include (but aren't limited to):
- Inflammatory Bowel Disease
- Hirschsprung's Disease
- Birth defects
- Diverticulitis
- Chronic, repeat infections e.g. kidney infections
- Trauma eg car accident or complications when giving birth
- Incontinence
- Painful Bladder Syndrome
- Interstitial Cystitis
- Cancer
- Familial Adenomatous Polyposis (FAP)
- Colonic Motility Dysfunction
- Spinal cord injuries
- Benign tumours
What dictates whether an ostomy is for life?
There is a lot of criteria based on each individual in question going into ostomy surgery that is taken into account to decide whether an ostomy will be for life. These are things such as your condition and reason for needing surgery. Other factors will play a part in this such as quality of life, age, chances of complications in surgery and/or recovery, whether the body may just need a rest to heal. As is with some Inflammatory Bowel Disease cases, an ostomy may be reversed and other reasons to be considered are whether other health problems may not make a patient a good candidate for future surgery.
Every case is different, just as each illness and/or need for surgery is very personal and unique to that patient.
Is an ileostomy temporary or permanent?
Temporary ileostomies (those that can be reversed after a period of time) can be required for conditions such as:
- Cancer
- Diverticulitis
- Inflammatory Bowel Disease
- Crohn's Disease
- Familial Adenomatous Polyposis (FAP)
J-Pouch surgery is also something else that can require the formation of a temporary ileostomy.
Permanent ileostomies may be required for conditions such as:
- Inflammatory Bowel Disease (IBD)
- Cancer
- Benign Tumours
- Colonic Motility Dysfunction
- Trauma to the intestines
What is taken away from the body's internal structure during surgery is a big factor as whether an ostomy is permanent or not. Usually, when somebody has an ileostomy made permanent, their rectum and anus are taken away, along with their large intestine (colon) and appendix and their back passage is sewn up as they no longer will use it. Leaving the rectum & anus intact when no longer being used can increase cancer risks as well as cause other problems.
This surgery is often referred to in the ostomy world as "barbie butt" or "ken butt" surgery!
Is a colostomy temporary or permanent?
Some conditions which may lead to the formation of a temporary colostomy include:
- Serious infections
- Inflammatory Bowel Disease (IBD)
- Cancer
- Colonic injury
- A colonic or anal obstruction
- Anal stenosis
- A fistula
Colostomies are usually permanent for things such as:
- Advanced cancer
- Incurable faecal incontinence
- Severe Inflammatory Bowel Disease (IBD)
- Permanent removal of the rectum & anus
Just as with ileostomy surgery, whether a colostomy is temporary or permanent will depend on what is taken away from the body's internal structure during surgery.
Is a urostomy temporary or permanent?
Typically, a urostomy is permanent and cannot be reversed, unlike some patients who undergo ileostomy or colostomy surgery.
Having two stomas
There are patients who have two stomas - which is usually an ileostomy or colostomy with a urostomy, at the same time, often referred to as "double baggers" in the ostomy world.
Amy's story of having a permanent ileostomy
Amy, who is part of our Comfizz team, has had a permanent ileostomy since 2011, formed due to severe Crohn's Colitis (Crohn's of the colon) and a large benign tumour on her colon which nearly took her life.
She had everything done in one operation - that is having her ileostomy formed and it being made permanent by the removal of her rectum, anus, large intestine and appendix. Amy is a proud member of the "barbie butt" club!
She was not a candidate for a temporary ileostomy or J Pouch surgery due to extensive and severe disease, extending into her rectum and anus, including severe strictures (narrowings). Her surgery was originally meant to be done laparoscopically too, but due to complications, this was not the case and the surgery took a lot longer than intended and ended up saving her life over 9 hours in theatre.
The photo above is from a more recent hospital admission where Amy needed intravenous fluids and steroids to combat dehydration and a small Crohn's flare-up and suspected Gastroenteritis. Pictured below is Amy around the age of 14, receiving a blood transfusion during a Crohn's flare-up and severe Iron-Deficiency Anaemia.
Amy's motto is "you own your stoma bag, it doesn't own you." She is passionate about helping others & has over ten years experience in the ostomy world, alongside having Inflammatory Bowel Disease symptoms from as young as she can remember and a diagnosis at the age of 7.
She was the third youngest in the UK at the time to be diagnosed with IBD and through her content, such as running her Instagram and here with us at Comfizz, she aims to provide support to others, educate and share ostomy life reality, insights and tips alongside other elements of her life.
Her primary focus when helping others is knowing that when she came out of surgery at 19, she would have benefitted hugely from an online community and support and felt less alone. Looking back at how she felt, she uses this as her drive to help others feel less alone, more empowered and also helps others in memory of her Uncle, who sadly passed away in 2012 due to Ulcerative Colitis complications.
Some ostomy statisics
- There are approximately 120 000 people in the UK with a stoma—that is equivalent to 1 in every 500 people living in the UK (Colostomy UK, 2019).
- By 2021: "It is estimated that 165,000 – 200,000 people are living with a stoma in the UK. Approximately 21,000 people have stoma surgery each year4,5,6." - PoliticsHome.com
- In 2019: the estimated global gender split for having an ostomy was 55% male vs 45% female. - healthandcare.co.uk
- In 2019: the estimated global split between ostomy types was 42% ileostomy, 44% colostomy and 14% urostomy. - healthandcare.co.uk
You can also find out more facts about ostomies here.
Disclaimer: As always, this post is from our Social Media & Marketing Specialist, Amy's, experience of living with a permanent ileostomy, Crohn's Disease and from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.
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Hello Tina,
So sorry to read this – that must have been such a huge shock for you.
First of all, well done for reaching out about this. That can take so much courage!
I’m sure your daughter would want to know how she can help and wouldn’t want you dealing with how you are feeling by yourself.
Have you a stoma nurse or GP you can speak to about how you are feeling? My stoma nurse has been a great mental support for me and can also point you in the right direction for other forms of support, as can your GP.
Please feel free to e-mail me at amy@kavendor.com and I will be more than happy to have a chat with you.
The online community also can be so reassuring and warming on places such as Instagram :)
We are sending you all our love and support.
From the Comfizz Team x
I had to have emergency surgery last October, when I came round in ICU I couldn’t understand what had happened to me – I know I was in terrible pain and had something strange attached to me. When after a few day’s I was told that I’m very lucky to be alive as my large bowel had died and this strange thing attached to me was a colostomy bag. I was devastated-in shock and just couldn’t stop crying. This is the first time I’ve posted anything but I just need to know that I’m not on my own in this situation, I don’t even tell my daughter how I feel, I’m just so depressed i just don’t know how to cope.
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