Living with a a stoma can feel very frightening, scary and life can be unpredictable but when your Autistic with a stoma it can bring about even more challenges.

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My journey began when l was only four years old. That's when the GP and consultant diagnosed me with chronic constipation. At the age, l loved playing football with my da, but the tummy pains made it hard. Sometimes the pain would stop me in the middle of a gam, and other times l had to run straight to the toilet. It felt like my body was getting in the way of the things l wanted to do.

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Because l'm Autistic, l process information through my senses in a different way - not wrong just different. That meant l couldn't always recognise what was happening inside my body or explain it to my parents. I didn't always have the words for the pain or the discomfort, and that made everything feel even more confusing.  

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During the worst moments, l would ask my dad to sit in the bathroom with me. I needed him there to help me understand what was going on, even though neither of us had all the answers. Those times were overwhelming and made me feel anxious, like everything was happening to fast and too intensely. 

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But this was the start of my journey-- the part where l learned that my body needed help, and that it was okay to need support.

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I seen my GP for a long period of time who gave me lots of different medications such as, Movicol, Lactulose and Sodium Picosulfate and he also advised me to change my diet. This was very hard for me as due to my sensory differences l find it hard to take tablets, and have a fairly rigid diet, so even though my mum knew the food that would help, she found it impossible to get me to eat it. 

Me and mum decided to go back to GP, and they now referred me to the bowel and bladder clinic to be seen by the nurses. I n this appointment they explained to me how use the toilet and how important it is that my body needed a lot of nutrients and nourishments for my bowels to work properly. Which l didn't really understand because by this point, l was only 6 years old, but my mum made lots of notes.

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The GP transferred me to another hospital to see another consultant where they prescribed me with more Movicol and Sodium Picosulfate at much higher dose. During the next two years l went back and forward to this consultant, but it didn't seem to help. My pains contained, l got referred to a surgical consultant, where they explained that they think it could be a good idea for me to have an ACE procedure done. 

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By this time, they sent me to the stoma nurses to explain how this would benefit me and what the procedure consisted of. 

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My ACE operation took place in October 2022, when l was only 10 years old. I got this ACE procedure to flush my bowel which would help me to have a bowel movement. To do this my mam would have to make up 1 litre of salt water and take my stopper out of my tummy and place a catheter tube with a bag on the end so the water could flush me through. This felt very daunting. 

My first time doing this was a really overwhelming and over stimulating time for me as this was very uncomfortable and l was scared, l went into a meltdown as l felt like l could not do it. This went on for a few days then my mam got in touch with the consultant then said this isn't going to work for me.  

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After some thinking the consultant then decided that l needed a stoma bag which they thought would benefit me more. The stoma  l got is called Colostomy stoma; this was done 1 month after the ACE procedure in November 2022.

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When waking up from this surgery l got a big shock as l still had my ACE alongside my stoma. The reason for this is because the doctors wanted the ACE to help the stoma. They also put a catheter in the ACE which had to be changed every 6 weeks.

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After my surgery my mum got taught how to look after my stoma and how to change it as well as flushing my ACE. I found this hard, which might be because of my sensory differences. I didn't like to look at either and so then l would sit with my tablet Infront of me, which l still do this now 4 years later. 

I went on holiday to Greece in 2023 not long after my surgery and l was embarrassed and  scared on how l looked with certain clothes on and l wouldn't go in the water without covering up so people didn't see my stoma and ACE. This had an impact on my holiday. I also struggle with personal care as l am terrified of it getting it wet. Having a stoma has brought challenges into every part of my life. Some of these challenges come from the stoma itself, but a lot of them feel bigger because l am autistic. I process information differently {not wrong, just different} and that means changes in my body or my routine can feel much harder for me than for other people.

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My mam every night still has to flush me with 1 litre of salt water, also with an alternative of Moviprep. I also need my stoma bag changed regularly, but l wont let anyone else, but my mam and dad touch it. This is due to who l trust with it as l am scared​ in case anything goes wrong. 

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Recently my consultant brought me in for another operation to have another look at my large bowel to decide what to do next, They have now referred me to another consultant { Gastroenterologist} to see if my large bowel is working properly or in case l need another operation. If l do have another operation this could mean that my Colostomy will be closed and l might have to change to ileostomy stoma. This means it will work off my small bowel and will be so much better as l will no longer need to be flushed anymore. 

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Right now, i am waiting to see the new consultant at the end of February 2026. Waiting is hard, especially when you do know what the answer will be, but this is part of my journey. When l know more, I'll keep updating my stoma story, because l want other young people and their parents to understand that even when things are scary or confusing, they're not alone.... 

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Well that final wait was over l have been to see a gastroenterologist, this was due to my  surgeon sending me to talk with her to see if there was anything else going, or anything else they could do for me.. The simple answer was NO, they can't, to be fair  l think they have decided that my large bowel has no push, meaning l can not push a poo out myself into the bag without getting a flush off my mam, so now l have to do the hardest thing again is to wait to see what they are going to decide what to do.... so now l am waiting on appointment with my surgeon … keep you posted!

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"My Stoma journey has made me a little more confident and much more self-aware. I hope my story can inspire and guide you on your own path"

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