Hello, I’m Sally and I’m 23 years old. I have had my stoma for just over two years.
I’m a law student and in my last year of university! My stoma story is a little
different as I had no idea that I had UC, till I had my first flare which required
emergency ileostomy surgery.
In April/May of 2021, while experiencing a stressful time at university, I fell ill with
Ulcerative Colitis. My mum was recently diagnosed with UC too at the time. I did
not know that I had UC or that this would turn into UC. My symptoms included
hive like rashes all over my body, over a week of extreme constipation, which I
went to A&E about, as I was in a lot of pain and discomfort. I was refused from
the hospital, laughed off and told to just take laxatives. Once I returned to
university, I was experiencing the complete opposite, I lost so much blood and
had no control whatsoever. I had no appetite and looking back, I lost a lot of
weight quickly. I returned to A&E in my university city, in a lot of pain and
discomfort, I was sent home again being told my CRP was ‘slightly high’. My CRP
was over 200, it shouldn’t be over 7. It was clear now that I was experiencing an
extreme flare up of UC and my bowel was close to perforating. I called my
university GP, who urgently made me go back to A&E as she was very worried
about my CRP levels. I was finally seen to and taken seriously. I had a
colonoscopy and diagnosed with severe acute ulcerative colitis. I spent a week in
the hospital on IV steroids, which unfortunately didn’t work. I was therefore told
about the ileostomy surgery and what this would entail. I was then rushed in the
next morning for this surgery. The surgery went the best it could, I did have to
take prednisolone for 8 months after surgery as my body really struggled with the
weening off process. This was a horrible experience and if anything, the side
effects of all of the medications, affected me more than my stoma. I am now
totally medication free!
During my short diagnosis and surgery time, I dealt quite well with what I was
going through. I am very head strong and get on with things, however this was
probably down to shock and how ill I was. My family describe my face as lifeless
when I was on facetime during it all. (I was ill during Covid, so I could not have
any visitors during my illness and diagnosis) I think not being able to have my
family at my bed side, forced me to be strong for myself and take the news in my
stride. Around a year after my surgery, I started to feel upset a lot and grieve my
old life and all the plans I had made for my life. Now, over 2 years on, I am so
much more confident with my body and my new life. I have adjusted to the
changes that I need to make each day, but also, I still have so many personal
and career goals that I know I can and will achieve.
So, just as background, I fell ill just before my second-year exams. Therefore,
when I decided to go back to university, I decided to transfer to a closer institution. This therefore meant, I had to re do my second-year studies. I studied from home last year and I am now living in a shared uni house for my final year! I felt it was necessary for me to move out for my final year. I needed my independence again; I really wanted to succeed and have my full focus on my studies. In terms of shared houses, I recommend getting an en-suite room! This just takes the anxiety away and means you always have access and can keep all your medical and stoma equipment close by. I was anxious about attending seminars and lectures, which I am still now. Worried about leaving to use to the toilet and about noises etc. I try to avoid this by making sure I eat before morning seminars and lectures, as I find my stoma is active/louder if I haven’t eaten.
In terms of noises, I believe there’s a mental element to it. When I am conscious
around noises, I tell myself that no one is going to automatically think it’s a stoma
and they most likely can’t even hear anything! When it comes to part time work, I
have only two words. REASONABLE ADJUSTMENTS. Make sure you tell your
job about your disability and advise them on any adjustments that they can make
to make things a little easier for you. This is a legal requirement. For example, a
chair, frequent toilet breaks etc. I am not much of a drinker/clubber, but I have
been a couple of times. My advice would be to make sure you eat enough and
plan out where toilets are etc.
- I have found that being prepared and having good time management will help
you a lot. Always make sure you have spare stoma equipment with you! You
don’t always need it but the time you don’t bring it, just our luck something will
- I like to be early to lessons, appointments etc. This just means that if you need to
attend to the toilet or have a snack/drink etc you aren’t worried for time.
- I love a good body spray, so I always have some with me, just to take any anxiety
- In terms of meetings, seminars etc, I let my lecturers know ahead about my
stoma. This means that if you need to rush out or leave, there isn’t an
awkwardness to explain yourself or having to worry about looking rude.
- I change my bag each day, this makes me feel cleaner and fresh but also takes
the worry away around leaks. I know sometimes you don’t feel like it, but it does
make you feel fresher and ready for the day. Unless you have sensitive skin and
your routine is already working for you, this is just what works best for me!
- Lastly, I have found having an unrelated and active hobby has really helped me
physically and mentally. I love spin classes and working out! Take it easy of
course, but I think it’s important to keep your body moving but also mentally it
keeps you happy and positive. As ostomates, we can have some down days as it
can all become a bit much, so it’s important to have your little hobbies and things
to make you smile each day.
I don’t mind questions! I will be completely honest; I did not understand what a
stoma was before I had one. I did not know about UC or Crohns disease, I just
saw the pain my mum was in each day. Therefore, I am not offended by
questions or confusion. I simply explain what happened and what a stoma is. As
long as I am met with polite questions and no judgment, I could speak about it all
day long. At the end of the day, it is very interesting how our bodies can carry on
without a major organ!
However, I do wish people, especially management or workplaces were more
educated around invisible disabilities. Just because we look ‘normal’ it does not
mean that we can perform the same as we once did, or as others. Therefore,
reasonable adjustments are so important. These types of environments can
make it feel too awkward to keep asking for such adjustments, but it is important
that you have these, as it could be making your condition even harder to deal
with each day! It is a legal requirement!
I am thankful for those ostomates that share their stories and information on
stomas on social media! Like my friend Holly, Stoma babe and
MrCrohnsandColitis. When I explain my stoma, to new friends, its great as they
already have some sort of idea what it is as they have seen Tiktoks, Instagram
posts or articles like these! It is so brave to speak about our experience, so I am
grateful for them!
Since having my stoma, I have become more aware of the language people use.
So, it’s important to think about the words and phrases you may be saying and
how these may offend or make people with disabilities feel.
When I was younger, I was so critical of myself and my body. I wish I was more
appreciative of it and just enjoyed life. I am now so much more confident, and I
see my stoma as an everyday reminder to love myself for who I am and not what
I look like. Of course, you will have down days and dislike things, but life is so
much more than what you look like. This is coming from a young girl who is
obsessed with lashes and hair, so please trust me when I say this experience has
made me so much more confident.
Advice for new Ostomates:
- My advice to others going through a similar experience would be to not limit
yourself to just your stoma and your illness. Of course, this is a big part of your
life, and it has changed so many things. Take it easy! However, it is easy to
forget about your hobbies and things that make you happy when going through a
life changing experience. So, when you can get back out there and socialise and
enjoy, I really recommend it!
- I recommend following others with stomas and researching people who also have
IBD/stomas. IBD/stomas and bowel cancer are becoming more talked about, so I
really don’t feel alone. I have even found professionals in the legal field who have
IBD and stomas. This has given me so much more inspiration and does not let
me limit my goals and expectations for myself.