6 Years Old with Ulcerative Colitis in Western Australia
Hi I’m a mum of 4, my 6 year old daughter was diagnosed with UC 8 months ago and my husband and I are seeking hope that things will get better for our sweet girl.
We are from a coastal town, 3 hours from the city (where our gastro team is) in Western Australia. We love music and going to the beach. Our eldest boy is 12, daughter 10, daughter with UC is 6 has just started year 2 and our youngest girl is almost 1.
Ulcerative Colitis Current Symptoms:
My girl currently is experiencing abdominal pain, loose stools and frequency. Regular accidents in her pants are just a common thing for her and us. I would say it’s moderate as she is still able to attend school (with lots of spare knickers) Steroids are keeping the bleeding and UC at bay.
My 6 year old girl was diagnosed 8 months ago after ending up in hospital for a week. After months of tests and waiting for a specialist appointment though our public system I made a decision to see a private gastroenterologist. She had severe bleeding, loose stools and cramping every half hour, he suggested it could be Ulcerative Colitis. Before we could get the Colonoscopy following week she started vomiting and was so weak so we took her to emergency 2 hours away. She was in hospital for a week on antibiotics, fluids and had an iron transfusion. She had a colonoscopy and endoscopy and found out she had UC. It was pancolitis and they started prednisolone and mesalazine. After 3weeks She was back at school and she ended up in remission for 4weeks before symptoms returned. Back on prednisolone. The maximum mesalazine didn’t work. She has just started tacrolimus and no improvement yet but fingers and toes crossed.
We had to learn what UC is and come to the realisation that there is no cure and the doctors, medications and needles are now a regular part of our lives. Family are supportive but my husband is the only one who truly understands as we have both been through the roller coaster together with our innocent, undeserving and beautiful little girl. I’m most concerned about how medications are affecting the rest of her body especially because she is so young and still developing and will we find something that works!? We are considering moving to the city to be closer to the hospital as 6 hour round trips are getting exhausting for her and us. We don’t know anyone else with Ibd and feel isolated. We are open to any advice or support from anyone in a similar situation to us. Diet research (scd) is now our next step.
Steroids work but she’s becoming steroid dependant.
Mesalazine only worked for a few weeks.
Currently trying tacrolimus with hesitation.
written by “Flick G”
submitted in the colitis venting area