At 11 Years Old, I was Diagnosed with Crohn’s disease

by Surakhsha S in Advocate August 9, 2021
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I had an eventful childhood, some parts were worse than others but nevertheless I grew up a happy child. I did well in school, had great friends and enjoyed life. Then I started getting ill at 9 years old, the odd stomach ache would appear here and there and mouth ulcers. At the age of 11 I was incredibly ill, I was fatigued, I couldn't eat, whatever I ate came back up and the stomach aches were excruciating. No one knew what was wrong.

Eventually, I had lost so much weight my mum grew very concerned. She took me to the doctors and refused to leave, they took my weight very quickly referred me to hospital. At this point I wasn’t aware as to what was going to happen. I remember getting to hospital and being in a room, the nurse came in and asked my mum some routine questions. I can’t remember how I passed my time in the hospital for a few days; all I remember was being hooked up to a drip machine for IV fluids and the heart rate monitor. Eventually, I was transported to another hospital for a colonoscopy and endoscopy for some biopsies to be taken to see if anything could be found.

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After the procedures, I was transferred back. That same night I had a nastro-gastric tube, also known as an NG tube –  to feed me a formula that replaces nutrition that I wasn’t getting due to lack of food. This was the first time I was told I couldn’t eat certain foods, in this instance it was foods high in fibre but I could try and eat some things. It was  soon to be the start of an 8-week elemental diet. I wasn’t allowed any food or drinks except water, sprite and Fox’s glacier mints. More time passed, more visitors visited and more procedures were done. Doctors prescribed multiple tablets. Unfortunately, I’ve been on a huge list of medication I don’t remember all the names, plus I was still a child. My two best friends were the drip stand and feed stand at this point.

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Days went by and finally one day I had a visit from one of the consultants I will never forget. We’ve got your results from the colonoscopy and endoscopy’ he started with. I was relieved they had an answer, then came ‘they show you have got Crohn’s disease’. To be honest, at such a young age it didn’t register what he was saying. I’d never heard such a thing. I was just like ‘okay, so what happens now’, The words I heard next were ‘it’s incurable, you’re going to have this for life but we can treat it.

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Throughout the following years, I had been admitted into the hospital countless times due to constant flares with a list of treatments. Unfortunately with crohn's disease there is no medication that is guaranteed to help, it's a lot of trial and error and a lot of steroids with a common side effect of 'moon face'. I have had three surgeries, two small bowel resections where they remove the inflamed part of the bowel and reconnect the two ends, and a panproctocolectomy which is the removal of the colon, rectum, anal canal and the creation of a permanent ileostomy. The panproctocolectomy saved my life, it has put me in remission since 2016. This past February, I celebrated my 25 birthday and I can happily say I am now enjoying a full and active life — as a blogger and advocate in the IBD community. I am living example that when life gives you lemons or crohn's, you can make the best of it....and make really good lemonade.


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Surakhsha S

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About me

Surakhsha is 25 years old from the UK and was diagnosed with crohn's disease in 2007. She now lives with a permanent ileostomy since undergoing major surgery in 2016. As a personal goal to help others feel less alone with their IBD, Surakhsha blogs at Crohn's and more (www.crohnsandmore.com) and has recently co-founded global South Asian platform IBDesis, in the hope to amplify the voices of fellow IBD sufferers who originate from South Asia.

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