Living with a stoma – Connor tells his sister’s story

Published on August 2, 2021 by TFP Team Category: News
“thank you NHS” sign affixed to tree

Over the last couple of years, Connor’s sister, Summer, has been in and out of hospital with serious bowel problems. Happily, she’s now recovering well after surgery and is seeking to raise awareness of her condition in the hope that she can help others with similar conditions.

Over to Connor to tell her story.

Summer’s story

On 21 June 2019, my sister, Summer, was diagnosed with unclassified colitis, the day after her 19th birthday. Her symptoms started in February 2019 and, after months of tests, colonoscopies, and meetings with specialist doctors she received her diagnosis.

Ulcerative colitis is a condition that causes inflammation and ulceration of the inner lining of the colon and rectum (the large bowel).

In Summer’s case, being diagnosed with “unclassified” colitis means she was diagnosed with colitis, but the doctors were unsure if she also had Crohn’s disease, which is another form of inflammatory bowel disease. Symptoms include rectal bleeding, going to the toilet more than 30 times a day and extreme pain.

After her diagnosis began the treatment. Over the next two years Summer tried a variety of different medications in an attempt to get her condition under control.

She had 10 courses of steroids (more than 2,000 pills in total) throughout the course of this two-year period, as well as different variants of immunosuppressive treatments, which came in the form of injections, pills, and even spending a whole day at the hospital on an IV drip.

Some drugs worked for longer than others but unfortunately none of them worked long term.

In March 2021, the specialists informed Summer that her only option left was surgery, as all other medication had proved unsuccessful in dealing with her condition.

Life-changing surgery

The surgery entailed removal of the entire large bowel and forming a stoma. A stoma is where part of the small intestine is brought to the surface of the skin. It collects waste in a bag stuck to her stomach. Naturally, Summer felt very apprehensive about the surgery as it is life-altering, but she also knew she would get her life back.

Summer’s surgery was scheduled for 28 June this year, a week after her 21st birthday. She spent a week in hospital after the surgery, during which time she was very ill with uncontrolled pain from the operation, nausea, and vomiting.

Once this had passed and she was able to eat for the first time in a week she improved dramatically. It has now been five weeks since her operation and she is improving day by day. She is struggling with her energy levels, which affect the amount she is able to do, as her body still needs time to heal.

Summer is adjusting well to life with a stoma and has even named him Sid! She has to change the bag every one to two days and empties the contents four to six times a day. The bag has a carbon filter, so it doesn’t smell. The bag is quite easily concealed under most clothes, so most of the time you wouldn’t even know she has one!

To raise awareness, she has created an Instagram account called @summers_stoma designed to help others in her situation. She posts regular updates about her recovery and explains what it’s like to live with a stoma.

Despite having a lot to overcome she has a very positive outlook on life now as the stoma will enable her to do a lot more things that she wasn’t able to do before. She will still need another operation in the future, but at the minute she is focusing on her recovery before she returns to complete her 3rd year studying psychology at university.

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