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Thriving, Not Surviving - Living with a Stoma Bag


The idea for this blog came to mind, when I recently had a patient who found it incredibly difficult to discuss their stoma bag and how to eat well and safely with it. In their words, they hated it.


This saddened me, because the stoma had potentially saved their life, and they are going to have to live with it for a long time. Also, their stoma will empower them to live more independently, out of hospital and in less pain.


So, if this blog helps at least one person to live a happier life with a stoma bag, then it is a success.



 


Why do people have stoma bags?


There are many different reasons people have stoma bags. This blog is going to focus on Inflammatory Bowel Disease, which consists of Ulcerative Colitis (UC) and Crohn's disease

.

They are chronic diseases that cause inflammation in the gut, Crohn's can affect the whole digestive tract, whereas UC affects only the large intestine and rectum. Symptoms of both include abdominal pain, diarrhoea, blood in the stools and fatigue (1,2).



 


What is a stoma bag?


A stoma is an opening in the abdomen, that allows the bowel to be brought to the outside. A bag is fixed on the other side of the opening, where gut contents can empty into.

They are formed during an operation, when the damaged part of the gut is removed, either to allow the remaining gut to heal before re-joining the gut in a later surgery and reversing the stoma, or they can be lifelong (3).

They are more common than you think, 190,000 people in the UK have a stoma bag (4).



 


Ellen’s Story


A close friend of mine is the perfect example of someone who has come to terms with living with a stoma bag, and thrived with it. Ellen spoke to me about her experiences of living with a stoma bag.


Ellen has suffered with UC since she was 14 years old, and in 2019, after having tried multiple different medications, including biologics, she had surgery and an ileostomy formation at the age of 26 years old (she is now 31 years old). Ellen had many years to come to terms with the possible fact that one day, she may need a stoma bag. But she was still worried about how she was going to manage it and what it would look like. However, after years of suffering, not being able to work and at the end, being housebound, she knew she had no other choice.


Ellen told me that she believes knowledge is power. She researched and researched, she tried on bags pre-surgery to know what it felt like, and she discussed it with family and friends.

But what Ellen found most valuable, was finding people of a similar age on social media, living with stoma bags. She found blogs, forums and social media pages all about people's stories, their advice and understanding.

She did not feel alone and knew if other people could do it, so could she.

Ellen had her whole life ahead of her, and knew that the stoma bag would give her freedom.





Another major factor in the success of Ellen's adaption to her new body and life, was the input of healthcare professionals prior the surgery, including surgeons and stoma nurses.


She knew where the stoma was going to be placed, the type of operation she was likely to have and the recovery time. Unfortunately, not everyone is fortunate enough to have elective surgery; emergency surgery may be needed for some. For these people, post-operative support is essential.




Ellen's stoma gave her a new lease of life.


She no longer had to worry if there was a nearby toilet, wasn't so fatigued that she couldn’t go out and see her friends and could eat what she wanted again.


There were some challenges at the beginning, including a few stoma leaks. She discovered which foods made her stoma unhappy (sweet potatoes!) and experienced dehydration.





Ellen shared her top three tips with me:


1) Dioralyte in the Summer months to prevent dehydration


2) Try small amounts of foods that maybe high in fibre at first to see what your stoma can tolerate


3) Name your bag - her bag is called Timmy, it is a code name when out in public and adds humour



Ellen does have part of her rectum left, so she could possibly have a reversal in the future, however Ellen said if it were feasible, she would still opt against it. She would be worried about her UC flaring again, and then the risk of further surgeries. Ellen does not want to jeopardise the stability she now has with Timmy.


Everyone’s stoma and their stories are different, each person going through that experience will have different obstacles. Ellen’s overarching message was to reach out online, find people that understand, and find hope.


A huge thank you to Ellen for sharing her empowering story, she truly is an inspiration.



 

Elective Vs Emergency


Emergency stoma formations can result in higher levels of complications and patients have been found to have poor quality of life post-surgery, compared to elective stoma formations (5). Thus, more research is needed into this area, but anyone reading who knows that surgery might be a possibility in the future –


  • Engage with your healthcare professionals – ask lots of questions!

  • Research on Crohn’s and Colitis UK

  • Engage with support groups online


 

Eating with a stoma bag


Colostomies and ileostomies differ slightly with how food and drinks are tolerated, also everyone’s gut is different. So please see a Registered Dietitian for personalised advice. It will be a little bit of trial and error at the start! But people with stoma bags can follow a relatively normal diet, eat out with friends and try new foods.


It is advised to be cautious with certain high fibre foods, e.g. sweetcorn, popcorn and nuts, as they may get stuck in your stoma and block it from emptying. However, not everyone needs to avoids these types of foods altogether, trying them in small quantities and chewing them well – you may find you can tolerate them after all (6).


This blog has particularly focused around eating and nutrition with a stoma bag. If you would like further information about different aspects of life, e.g. clothes, holidays and relationships- please find some useful links below.


Gut Love to you all


Sophie Thompson

Oxford Gastro Dietitians


Links

References


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