emPOWERed. Stories

Everyone's journey with bowel disease is different.

Thank you to everyone who has already shared their story with us.

If you would like yours to feature on our website, DM us a photo of

you wearing your emPOWERed clothing along with your story, or

email us at info.feelempowered@gmail.com

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Zain's Story:

Five years ago, I went to bed with a stomach ache. But this ache didn’t go away, with gradually increasing pain, frequency of bathroom visits and bleeding.
Being dismissed from A&E and my GP, after losing 7kg in a week I was finally able to confirm my colitis diagnosis with a specialist. Being prescribed a pharmacy worth of medications, my journey of tracking diets, mixing and matching treatments and managing my stress began.

My life felt shortened before it really started and with my loved ones being unfamiliar with the disease, I never felt more alone.

But I had a choice - to either be bitter, or to become better.

I thoroughly believe there’s an opportunity in everything and a chance conversation with a friend living with colitis, along with my amazing university welfare support, changed my life. I realised that being able to talk to someone who was able to relate to my troubles made a huge difference and lifted the mental weight I struggled with. From then, I’ve endeavoured to provide support to others, starting a Crohn’s and colitis society at university, running a successful invisible illness toilet signs campaign, mentoring, fundraising and now getting involved in emPOWERed.

Through sharing our countless inspiring stories, we hope to establish a community where awareness is raised and our many challenges can be overcome, together! Thank you for being here. .

Rupert’s Story:

I was diagnosed with Ulcerative Colitis back in 2005. Initially, the symptoms were generally mild, but over time, they started to escalate. I suffered from nausea, fatigue, blood loss - all of the usual symptoms. As the urgency got worse, I became very anxious about leaving the house. I avoided social events, and really struggled with my commute to work, living in fear of an embarrassing accident on a packed tube train.

My story took an unusual turn in 2013. My symptoms were worse than ever, but worryingly, I started to suffer from constipation, night sweats and rapid weight loss. In January 2014, I collapsed at home with a major internal bleed, and was rushed into Northwick Park. I was stabilised with many units of blood. After a series of tests, I was diagnosed with Non-Hodgkin’s Lymphoma, with a tumour presenting in the colon.

I started chemotherapy, but almost immediately, the colon perforated. I was rushed into emergency surgery to have a sub-total colectomy, and have lived with a stoma ever since.

Since completing the chemotherapy, and regaining the weight and fitness I lost, i have genuinely never felt better. I’m fitter than I ever have been, enjoying an active lifestyle, and I no longer have to take any medication. I no longer have to make excuses to avoid social events - I actually look forward to them and enjoy them! Since having a stoma, I have been able to put the worst symptoms of IBD behind me.

I’ll be proud to wear this jumper, and hopefully it’ll spark some curiosity and start some conversations that’ll help to raise awareness.

My stoma bag is an enabler. With it, I feel empowered to live a normal, happy life.

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Amy’s Story:

My ileostomy bag emPOWERers me! ⠀
Life, with or without a stoma, has its up & downs for sure, like a heartbeat. It’s because of my stoma bag, surgeons & the people close to me making some tough decisions that I am here to experience those ups and downs.⠀

  • Crohn’s symptoms since very young & a diagnosis at age 7 

  • I was treated for Crohn’s in the small intestine for 10 years then found out aged 17, moving over to the adult clinic, that it was actually mainly in my large intestine (colon).

  • Lots of medication tried, including steroids, Azathioprine & Infliximab, but now med free besides painkillers etc when needed.

  • Permanent ileostomy - Stacey stoma 2011, when I was aged 19 due to severe Crohn’s of the colon (Crohn’s colitis), rectum and anus and some perianal Crohn’s.⠀

  • A large benign tumour was found on my colon during surgery, hence why it wasn’t done keyhole. I have a badass warrior scar down my stomach, still have my belly button (yay!), a drain scar and a scar on my bum from a “barbie butt” creation. ⠀

  • If surgery had been left literally hours, I was told I wouldn’t be here & that it was very touch & go. I required a lot of blood in surgery.⠀

  • My stoma has given me my life. I’m NOT defined by my ileostomy bag, but my ileostomy bag is part of me that I’m proud of.


Wearing this t shirt will hopefully prompt some conversations surrounding stomas, bowels & all things #inflammatoryboweldisease related!  I love the idea of the stoma bag on the T-shirt to draw attention to something that is usually covered & spark curiosity. It is so important to have these conversations to help reduce stigma & raise awareness.  Just because you can’t see something, doesn’t mean it isn’t there. Always be kind.

You own your stoma bag, it doesn’t own you! 

Margaret's Story:

After 2 years of tests that didn't find anything, I was finally diagnosed with moderate to severe Crohn's disease at age 16 . I was quite underweight at that point, but once I started on medication I gained weight, too much! On steroids I became overweight and was struggling with my health in that regard. I tried a string of immunosuppressants that didn’t fully work, such as azathioprine, humira and infliximab.

In 2017 I underwent a terminal ileum resection and hemicoloectomy. About 30cm of my bowel was removed because I had developed scar tissue in it.

Unfortunately, I had some complications after the surgery as my wound got infected with cellulitis, and then became a fistula. I lived with the enterocutaneous fistula for a year before it eventually closed. Now I am on vedolizimab, which has been a great drug for me. I've started showing signs of immunity to it, but for now it works!

I hope that by sharing my story I can help spread awareness about invisible diseases by making them more visible and better understood.
 

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Lisa's Story:

Life with a stoma can have its ups and downs, I can have good and bad days. If it wasn’t for my bag I wouldn’t be here. I will have my stoma made permanent in the near future.

I’ve Crohn’s Disease since 2004 when I was 18.
I have Crohn's disease, and have now had my ileostomy for 5 years.

Before I had my stoma my Crohn's was flaring so badly that I was in hospital for 5 weeks and needed an NG tube.

If I hadn't had this surgery I don’t think I’d be here today.

My stoma has given me my life back. But I’m more than just my bag, I am me. I’m a proud ostomate.

 I will wear this T-shirt from feelempoweredclothing with pride and will gladly help answer any questions people may have if they ask about it. It’s important to have these conversations to help others and know that not all disabilities are visible. Just because you can’t see it, doesn’t mean it isn’t there.

I want to try to help others so that they don't feel alone.

 

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Jade's Story:

Getting diagnosed wasn’t easy or quick, it was a very long process as I was told it was IBS or all in my head by one GP over many many months. Once I was finally diagnosed I thought I’d take a tablet for a while and I’d be ‘cured’ as I didn’t know about any forms of IBD at that point. Oh how wrong was I!
I tried Lots and lots of medications over a few years and I wasn’t actually getting any better, even a bowel resection didn’t help as my crohns would come back worse each time, so stoma surgery was needed and I ended up having it done as an emergency operation as I was so poorly.

That was 3 years ago and it was a life saving and life changing operation. I am very thankful that I was able to have the operation, very thankful my stoma gave me my life back and very thankful for our NHS.

 

I now try to support others going through their own IBD journeys, raise as much awareness as I can of IBD and body positivity and show all that they are stronger than they think! No one is ever alone, especially within our IBD community.

Follow Jade @jadelouise.crohns

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Ant’s Story:

After battling with colitis for over 10 years, with medications not working and internal.organs failing, I elected for an ileostomy.

After a trying 6 months of recovery and 2 ops, things are starting to fall into place and my ileostomy has given me my life back. I'm free to eat what I want, do what I want and have the quality of life I've missed for so long.

This surgery has saved my life and now I can finally move forward.

Follow Ant @ibdlife

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Bethia's Story:

On my 21st birthday I got a cold which triggered an ulcerative colitis flare. In a short amount of time I went from training for my first half-iron man, to being in constant pain, malnourished and unable to walk the 10 minutes to university. Medications failed to control the flare, and I was told that I would need to have my colon removed and a stoma formed.

I felt optimistic about the procedure. After the hurdle of the operation itself, I thought that my life would quickly return to normal.

What was supposed to be a five-day hospital admission, turned into an 89-day admission, four major abdominal operations, blood clots, multiple vascular procedures, 10 days in an induced coma, a month and a half in ITU, and very nearly losing my life. On the 89th day I was discharged home weighing 37kg, unable to walk, and completely dependent on the care of my family.

 

Having lost a lot of my small bowel as well as my colon, I was unable to absorb water or calories adequately. I was caught in a cycle of painful dehydration, weight loss and regular re-admissions to hospital for IV fluids and electrolytes. It was at this point, with my local hospital unable to offer a solution, and having lost hope of being able to live independently again, that I was referred to St. Mark’s Hospital.

During the 8 weeks that I spent at St. Mark’s they diagnosed me with short bowel syndrome, and organised for me to have an operation to open up and stent a vein, so that I could have nightly parenteral nutrition via a Hickman line. Unlike the time spent in my local hospital, that was so full of fear, my stay at St. Mark’s was full of positivity, problem solving and hope.

Over the last 6 years the achievements and opportunities that my stoma and parenteral nutrition have made possible for me are countless. Cycling, climbing, running, graduating and working full time as a doctor, traveling, falling in love and getting engaged.

 

For me life is brilliant because of, not despite my stoma.