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Common Myths About Living With a Stoma

Over the years I have heard so many different comments about stomas. Fact vs fiction of who should and shouldn’t have a stoma. Along with being told you’re too young etc. So what have you been told about your stoma? What are people’s misconceptions? I have decided to write about what I have had to bite my tongue over and educate after the fact.

So what are the common myths and misconceptions made about stomas? Here are a few I have heard and listed below.

Misconceptions/fiction

  • – Only old people have them
  • – Only caused by cancer
  • – Having a stoma means your disfigured
  • – They make you smell
  • – They are unhygienic
  • – You can’t have sex anymore
  • – Is it a colostomy?
  • – It’s permanent
  • – What is an ostomy?

Part of having a stoma is raising awareness so these misconceptions aren’t made. There are in fact 3 types of stoma and not all of them are poo related.

  • – Colostomy- this is coming from the large bowel (colon)
  • – Urostomy- this is coming from the kidneys and drains urine
  • – Ileostomy- this is coming from the ileum (small bowel)

Other types of stoma rarely mentioned:

  • – Jejunostomy- is the surgical creation of an opening (stoma) through the skin at the front of the abdomen and the wall of the jejunum (part of the small intestine). It can be performed either endoscopically, or with formal surgery.
  • – Caecostomy- can be used effectively to allow colonic irrigation in an unprepared, obstructed colon prior to resection of the obstructing lesion and primary anastomosis

Permanent vs temporary facts

People say that having a stoma is permanent but that’s not always the case. Some stomas are temporary and others are permanent. It’s dependent on the individual circumstances of the illness and if the stoma is for relieving symptoms and giving the bowels a break. A lot of people have temporary stomas to aid symptoms of Crohn’s disease, Ulcerative Colitis, Diverticulitis, Sepsis and accidents. Whilst others due to the above mentioned have permanent stomas. It is simply down to the individual’s circumstances and the progression of the illness.

Caused by Cancer fact vs fiction

Some cancer sufferers do indeed have to have stoma surgery to save a life or get rid of the tumours or they could end up with a stoma due to the damage caused by the radiation to treat the cause.

Types of cancer requiring a stoma are:

  • – Ovarian cancer – this can lead to a colostomy or ileostomy
  • – Small bowel cancer- this could lead to an ileostomy
  • –  Rectal cancer- this could lead to a colostomy
  • – Cervical cancer- due to the uterus being between the bladder and rectum this could lead to a Urostomy, Colostomy or both in some more severe cases
  • – Bladder Cancer- this could lead to a Urostomy, Colostomy or both
  • – Prostate Cancer– this could lead to a Colostomy, Urostomy or both dependant on the operation and progression of the disease
  • – Reasons behind stoma surgery are quite possibly endless, not all surgery is due to the aforementioned in the above paragraph, here are some of the reasons surgery may be required to form an ileostomy, urostomy or a colostomy.

Here are some other reasons:

  • – Detrusor failure
  • – Birth defects
  • – Neurological Diseases
  • – Damage during Childbirth
  • – Trauma
  • – Overactive bladder
  • – Mesh Implants
  • – Fowler’s syndrome
  • – Radiotherapy damage
  • – Neurogenic bladder
  • – Hospital Malpractice
  • – Interstitial cystitis

Stomas are not just caused by cancer. There are so many conditions that can lead to having a stoma and it is not as clear-cut as people think.

I have listed below some of the conditions that can lead to a stoma formation:

  • – Crohn’s disease
  • – Ulcerative colitis
  • – Bowel cancer
  • – Autonomic Neuropathy (Dysautonomia)
  • – Congenital birth defects
  • – Ehlers-Danlos syndromes (EDS)
  • – Diverticulitis
  • – Slow bowel transit
  • – Freak accidents
  • – Bowel perforation
  • – Sepsis
  • – Neurological conditions
  • – Bowel obstructions such as lesions or scar tissue
  • – Medical negligence

The list is quite frankly endless. Stomas don’t discriminate, you can have them from any age. Some people have had them from birth. Some get them through surgery that is out of their control and it improves quality of life, saves lives, gives some back the freedom from their symptoms.

Smells vs Unhygienic

Having a stoma does not mean you smell or that you are unhygienic. That, in fact, is a load of “poo” pun intended unless you’ve had a leak or empty after a binge on garlic or in my case seafood the pouch on you does not smell. I have listed below things and tips to help control the smell of stoma output.

  • – Dietary change, pinpoint what’s causing the excessive odour and cut back on those things. Garlic, onions, alcohol & fish can cause smellier output
  • – Pelican have thickening sachets, this helps thicken the output and bind the smell as well
  • – Peppermint tea has helped me with my output smells
  • Deo Mint can also help, this can be sprayed into the bag to reduce odours

Having a stoma leaves you disfigured

Having stoma surgery leaves you disfigured? Ok, this is dependent on the person and how they cope with having their surgery and stoma. I will be the first one to admit I didn’t like my first stoma, I had an open wound that left my tummy disfigured. The second stoma I came to terms with it. It has given me my health back and a number of beautiful courageous people that post to highlight awareness to the fact they love their stomas and embrace them is amazing. There are things to help cover them should you be shy but there is also beauty in baring it all and being proud of life and what the stoma has given you back.

Sex

Having a stoma does not mean you can no longer have sex “Adult Shenanigans”. The majority of ostomates will lead healthy sex lives after stoma formation and most will say it has improved their sex life as they have more energy and a new lease of life after surgery due to a lessening of symptoms prior to the operation.

Summary

So these are the common misconceptions I have heard regarding stoma’s and what they may or may not represent. I would love to hear what you have heard. So please feel free to leave me a message over on my social channels.

As always

Many thanks for reading

Louise Xx

Louise uses our Platinum with Vitamin E range to keep her stoma site healthy. Try a sample here.

This blog post is intended to give advice to ostomates. The information given is based on Louise’s personal experience and should not be taken as clinical advice. Each ostomates needs are unique to them and their stoma care routine. Please consult with your Stoma Care Nurse before undertaking any changes to your stoma care routine or if you are experiencing any health issues.

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