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Neveah’s story
Neveah struggled with constipation for years and medication didn’t seem to work. She spent hours in the toilet at a time, at school and even parties. She was in lots of pain – it was upsetting. Then one day, we found ERIC and spoke to a Helpline advisor. It was a lifeline and with ERIC’s help, Neveah got her childhood back.
As told by Neveah’s mum, Dawn, and dad, Martyn
Neveah was around a month old when we noticed she was struggling to poo. We put this down to the medication she was on for silent reflux, which we were told was very normal.
As Neveah got older, she became more and more distressed when doing a poo. We went to see a GP and we were given laxatives to help loosen her poo. Neveah has never liked juice or flavoured water, so it was tricky trying to get her to take Movicol, and so the doctor prescribed Lactulose.
We would give Neveah the medication, then her poo would become too loose and so we would stop. The doctor just told us to keep increasing and decreasing when needed.
Things got worse
As Neveah went into primary school, things got worse. From the August until around March time, she would have awful problems going to the toilet. She would withhold for days, if not a week at a time. When she did manage to go, her bowel movements were very large and painful. She struggled with overflow too.
Neveah spent a lot of time in primary one in the toilet, and supporting her had an effect on her class teacher too. She would be so bloated that we couldn't dress her in a school shirt and would have to put her in a polo top with extra room. She would be in a lot of pain with stomach pains and require extra comforting at school.
Visits to the toilet at home or when we are out would always take a long time. If family members looked after her, they would become upset seeing Neveah struggle so much. Neveah would often have to spend long periods of time in the toilet when at parties or when we were out and about.
Still, Neveah was a very resilient child and would battle through the day still telling us how much fun she had at school.
ERIC’s help made a huge difference
Throughout the years, we spoke to doctors, and when she was struggling in school we had weekly phone calls with a doctor. The advice was always about increasing and decreasing medication.
Then we found ERIC.
I came across ERIC when researching constipation online when Neveah was five years old. I filled out a form online and then within a week or so we had a call from one of the helpline advisors at ERIC.
Janet was honestly one of the best lifelines we have had through this journey. She talked us through and validated everything we were feeling. Janet spoke to us about disimpaction, what this is and how to do it. She explained what 'overflow' is and what we could have been seeing with Neveah.
Janet gave us information to pass onto the doctor and gave us some real practical advice on how to use Movicol in different ways, as we were struggling with Neveah taking this.
We also attended the ERIC parent webinars online and were able to share these with school.
Finally, we felt listened to and felt like we had light at the end of the tunnel. We felt so relieved. We were finally able to understand what was going on and knew there was a way forward. Family members were able to gain an understanding too.
I literally want to cry at the thought of everything Neveah went through and where we might be today if it wasn't for ERIC’s call and the ongoing support ERIC give.
Things are getting better
Neveah still needs to take regular medication to help her poo, but we are slowly reducing the doses. She sees paediatricians yearly.
Neveah was diagnosed with a dairy intolerance. We removed dairy from Neveah’s diet and it really helped her condition. She rarely gets bloated and medication seems to work better.
We have some trouble with what we think might be the Sodium Picosulfate giving her tummy pains, however when we reduce this too much Neveah struggles to poo. We describe these pains as being like a teenager with period pains. These pains can make her nauseous and there have been times where she has then been sick.
When Neveah has dairy she gets an incredibly sore stomach, gets nauseous and can often be sick. Neveah becomes constipated and following this her bowel movements take around a week to return to 'normal'. Sometimes we can manage this and counteract with medication, other times we just have to see it through. Neveah will wake during the night to go for a poo (most likely due to medicine kicking in).
Managing these bowel complications on a day-to-day basis is just normal for us now. Going on holiday means carrying medication for her daily doses and she has always been great at taking her medication.
ERIC gave Neveah her childhood back
I cannot express the difference ERIC has made to our lives. We were able to fully understand what constipation is, how it happens and how to properly treat it. We were able to see where we were going wrong from other advice and could now treat the constipation effectively.
ERIC gave Neveah her childhood back. ERIC's advice has given us the knowledge we need to understand what is going on and their resources have helped us educate Neveah.
The resources have helped us keep good communication with the school using the poo recording charts. She is a confident little girl even around the stigma of poo because we have been able to keep her informed of what is happening in her body. She will now confidently go for a poo no matter where she is.
She once told me that someone in school commented on the smell. My mummy heart dropped, worried she would be bullied or have her confidence knocked. But then when I asked what she said back she told me: "Well, it’s a toilet, it’s what it is for."
ERIC gave us the resources to educate not only ourselves but Neveah. We can hold lovely conversations about the importance of going for a poo when she needs and how she can explain this to her friends if she needs to.
I often recommend ERIC to families, and the local community nurse who I work with also uses ERIC resources to support the families. It’s a great resource for everyone to have.
Fundraising for ERIC
I ran a half marathon in May 2023 raising around £500 for ERIC to say thank you and give something back for the support we received. I wanted to raise awareness of bladder and bowel conditions and how common they are. Multiple people recognised ERIC on my t shirt and shouted how ERIC helped them too. We donate monthly to ERIC through direct debit.
I would advise other parents facing the same situation: don't struggle on your own. Contact ERIC. Educate yourself with what constipation is and how it can display itself. Know that you are not alone and that things will improve. It did for us!
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Fletcher's story
Constipation led to a blockage, stretching Fletcher's bowel and leaving him unable to control his bowel movements. ERIC helped his family feel less alone.
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