My stoma called Henry!

written anonymously


Hi, I have wanted to write about my experience for some time, but I wanted to do it
anonymously! Why? Not because I am embarrassed, but firstly because I don’t tell
people. (Do you tell everyone you meet about your butt?) Well neither do I!
Secondly, the nursing I received locally was shocking, it made me want to be a
nurse!

In 2017 I woke up one day to find blood in my stools. The next 8 months was hell! I had ulcerated colitis (IBD), within a month I had no bowel control. I couldn’t eat,
drink, or leave the house and fatigue is something only those who have experienced
can understand. Imagine being well rested yet being sat still is sapping the same
amount of energy as running a marathon! It felt like my large bowel was trying to kill
me! I was given Methotrexate followed very quickly by Infliximab; these are important
medications (I advise everyone to look these up especially methotrexate as it is used
a lot for auto immune diseases) but my IBD was drug resistant. I was getting worse
every day until I found myself with sepsis and toxic megacolon. I (technically) died
on my sofa, so after my sepsis had been treated a week later, I was down a large
bowel and my life changed forever.

Waking up with your intestine poking through your stomach is a lot and it is scary!
You’re given all this literature about the foods you can no longer eat, the exercise
you can no longer do, the comfy clothes you’ll now have to wear, and you think, I
can’t eat what I want, wear what I want and also how will anyone ever find me
attractive with my c**p in a bag attached to me!! Luckily, I can eat nearly everything.
I can exercise (although a core muscle now has a hole through the middle, so I must
be careful), I wear tight fitted clothes and do feel attractive!

This is the point where myself like many others ventured to social media to try and
find support, there are many ostomy supports groups which I enjoyed at first, until
someone said “my stoma called henry, he is a naughty boy today, he keeps farting!
“This blew my mind, it’s a common coping mechanism, by naming something and
humanising something it can help some people deal with it better. It wasn’t for me.

Mine is just intestine, it doesn’t play up it just pumps excrement out
my body So, if you’re out and about and you hear someone talking about their stoma
don’t be surprised to hear its name!! I hate when someone first knows I have a stoma; most people look to my stomach and say “you can’t tell” is this a compliment? Am I supposed to walk around with it full and a whiff following me? And then you get the stomach stares! Please don’t do
this!


So, some information to remember from one student to another:


 Stomas come in so many sizes ranging from about 15mm to 50 mm that’s a
big difference, they can also be short maybe only 3/4mm out (this convex
shape can cause a lot of problems) to 100mm (the longer ones tend to be on
men and stomas fitted some years ago)

 They smell and it’s not pleasant luckily the bags these days rarely let the
smell escape but when emptying it can be offensive, the smell is your
stomach acid mixed with the food! You’ve eaten egg, you’ll know about it
later!

 Bags are a science; it can take months to find a bag you like and many like
me are forever loyal to that bag! We also have an array of wipes, powders,
sprays, and other bits we like to use when changing our bag.

 Kids are amazing with stomas they don’t care how you poop!

 Some stomas are for life and if they are, you’ll need another surgery in which
a surgeon scoops out your rectum and sews your bum up! (fun)

 There are also a few different types of stoma typically if its on the right side of
the body it will be an ileostomy although urostomies can also be sited on the
right, these are typically more permanent. If on the left side of the body its
usually a colostomy if a cancer patient is resting the bowel or a small section
of the large bowel has been removed it will be on the left and are typically
reversible.


So as a stoma patient to a student nurse, google stomas have a look and familiarise
yourself believe me, the patients are watching your reactions when you look after
them! They don’t need to see you wince! Hold your breath if you need to empty a
bag, it’s not nice, but it’s also horrible for the patient!

And tell your patients that life isn’t over, remember you read about a student nurse
who changed her whole career and trained to be a nurse AFTER having the stoma
fitted, it changed her life for the better!!!


Here are some links in case anyone wants to read a little more.

https://www.nhs.uk/conditions/ileostomy/
https://www.nhs.uk/conditions/colostomy/
https://www.nhs.uk/conditions/inflammatory-bowel-disease/
https://bnf.nice.org.uk/drug/methotrexate.html#indicationsAndDoses
https://bnf.nice.org.uk/drug/infliximab.html#indicationsAndDoses
https://www.pelicanhealthcare.co.uk/blog/ – This site is FANTASTIC there are lots of
helpful and positive blog posts looking at food, fashion, mental health and life after
getting a stoma!


Love a student nurse with a bag for life (not the Tesco variety)

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