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Early onset colitis 5 year old boy

Hello everyone, hope you are all doing well.

My son was diagnosed with stage 3 early on set colitis, pan colitis and he was 3 years old turning 4 at the time
Ever scince it has been a challenge and difficult time learning about his ibd and going through all sorts of medicines and hospitalisations.

Just wondering if there are any parents who have children with ulceritive colitis or early onset colitis that could possibly give me any useful advise on how they make thier child's life better quality at home and at school.

Also any adults who could advise on what they do to make things easier


  1. Hi , thank you so much for reaching out. I can't imagine what you've all been through since your son's diagnosis. 3 years old is such a young age and my heart really feels for you and your entire family! I know there are many caregivers here, so I hope they will chime in with some personal experiences or advice for you. Please know we're thinking of you and your son <3 Sending hugs - Pam (team member)

    1. Hi Pam, thankyou for your kind words and support. It has been difficult but it is a big relief knowing we are not in this alone. I do hope so that would be great.
      Thanks again Pam ♡

      1. I'm so sorry you are going through this and with your son diagnosed so young! My son was 12 when he was diagnosed with severe sudden onset Crohn's. It's been a hard road at times, but he is in remission and doing wonderfully well now. I'm not sure how old your son is now or how long he's been getting treatment, but my first bit of advice would be to make sure you have a doctor you trust who is a true partner in this journey. Switching to a doctor more aligned with our needs and values made such a difference. And make sure you have a support system--whatever that may look like for you: other parents of kids with IBD were a huge help for me. As far as school, I wrote a letter detailing my son's illness and how it might affect his ability to attend school and to focus on his work. This helped avoid having to have the same conversations over and over. And I gave them some pamphlets with the basics from a local Crohn's and Colitis organization. Oh--and a communication log so I could see how he did at school each day and vice versa. Try to take care of yourself, too, as hard as that might be at times. Getting a decent night's sleep was vital for my ability to function. Hope this helps a bit. Wishing you and your son all the best.

        1. Hi Jennifer, thankyou for your message and advice i really appreciate it!
          Im sorry to hear about your son but happy to hear he is in remission and doing well 🙂
          My son has turned 5 this year and started recieveing treatment at the beggining of last year. Things arnt going very well at the moment with his condition and he is also having inflamation with his liver but we are hopefull things will turn around and start to get better for him.
          I really value your advice thankyou.
          Hope you and your son are doing well and wish you all the best.

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