How Ted the stoma changed my life.

10 July 2021

Having surgery and learning to live with a stoma can be challenging for many.

Elizabeth used humour to cope with this change in her life and, after reading many stories from others, she decided to share hers (and Ted's!) for the first time.

For years I suffered chronic constipation, which affected many areas of my life.

Living with Colitis

 I was diagnosed with irritable bowel syndrome (IBS), cut out wheat, and ate less dairy produce but the constipation was ever present. I was constantly bloated and uncomfortable. Then, in 2018 I was diagnosed with Ulcerative Colitis affecting the whole colon. Initially I was prescribed mesalazine, followed by several hospital admissions requiring steroid treatment. Next, I tried adalimumab injections and vedolizumab infusions.

Part of me was relieved to have a diagnosis but I was also apprehensive about the journey ahead.

After two years, I had exhausted all medical options. I felt generally very unwell, my body was exhausted, and my bloods showed high inflammation. My thoughts drifted towards the strawberry on the tummy and the bag for life and thought that a stoma could be the only option left. In April 2020 I was again in a severe flare feeling pretty rubbish and needing treatment.

The nation was gripped by coronavirus, lockdown, and the NHS was under immense pressure. 

Under these huge challenges both the Gastro and surgical team treating me were fantastic. I underwent major surgery for a colectomy with end ileostomy.

My life changed for ever and a new kid on the block, my stoma named Ted, was built!  It was clear he was not temporary or reversible but a permanent fixture.  Although not keen at first, I had to accept Ted was here to stay and not going away. I have often adopted humour to cope with tricky situations and this certainly was one of them.

My way of coping was to name my stoma and treat him as a little person who is working hard for me.

He was a bit tricky to start with and reminded me of a baby. He was gurgling and bubbling will never grow up! He blew up at night like a hot air balloon and burst his banks on several occasions but we persevered. Well-meaning friends tell me it’s all behind me now but “No” I say, “it’s all in front!”.

Ted’s early days were a big challenge. He road-tested nearly the whole range of bags and pouches until we found one that he was happy with. Once we found it, there were no more side explosions and irritation to adhesive from certain designs.  Gradually, I Introduced new foods to fussy Ted. He’s not a fan of tomato skins and any peel is a definite no-no. Only the best for Ted!

Initially everything was smooth and mashed.

As soon as I ate different food, I would envisage him working hard on his treadmill to process it.  I talk to him and I pat him at night; he is keeping me alive so I treat him kindly. He is one year old now and I am happy to say I feel so much better in myself. Ted is still quite demanding but we have a routine and we have our challenges. He goes everywhere with me and has his own little bag. I have rearranged my bathroom to accommodate his pouches, potions, pads and lotions. He likes hanging out and not tucked in tightly so he chooses my clothes to make sure he is comfortable! 

So yes, Ted is looked after well. Hopefully soon when lockdown eases, Ted will go on tour, packed ready for our first adventure. This time last year was not good but one year on my life has improved dramatically.

My confidence is gradually coming back. We would both like to reassure everyone living with Crohn’s or Colitis that having a stoma can truly give you your life back.

We are a team. I respect him, look after him and thank him.

I am eternally grateful to the NHS for my wonderful treatment and support. Thank you for giving me Ted!

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