My Son Has Ulcerative Colitis:
I am the mother of a four year old boy from the UK who was has had ulcerative colitis since he was two years old. He was diagnosed at 3 years 5 months after a colonoscopy. The pediatric consultant had ruled out colitis as they thought it couldn’t possibly be this as he was so young. Before he had this condition he was so lively and happy. (he still is when the medication actually works)
At the moment he is having what i would call a mini flare up. Blood and runny poo up to 3 times a day. He was in remission for 4 months prior to this.
My Son’s Ulcerative Colitis:
He has just started school in January so has to have one dose of his medication at school. The other day was Shrove Tuesday he could not join in as has an intolerance to lactose.
I had to pick him up from school early on Friday as he had an accident at lunchtime. He could not get to the toilet in time. The teachers really know nothing about UC. ( i mentioned to the teachers and school nurse that i am worried about him been singled out by the other children when they realize he has a poo related illness they have said that a lot of the children are having accidents all the time and a child with diabetes gets a lot of sympathy from his class friends!)
I printed out an information sheet for them to read that i found on the internet and i really hope that they did actually find the time to read it.
There are so many foods and fruits that i want him to try but he is on a low fiber and low residue diet. His appetite is terrible he likes to eat little and often when he is feeling o k. Somedays he does not want to eat anything. Apart from his ensure milkshake drink which he loves.
He missed 4 months of nursery school last year as chickenpox was going around the nursery. It took that long for the doctors to give permission for him to have the vaccine. He is behind with his schoolwork and development. I am worried for him everyday i really just keep asking myself why him? And if him, why so young? I have 4 older children they are all fine. I do not actually know any one else with UC and have basically learned everything from reading information on the internet as even the GP was not very helpful and appeared not very well informed.
He takes sulfazalazine 500mg 3 times a day. Iron and Folic acid. He has taken pred for 3 months when initially diagnosed and the pred enema for 6 weeks in the summer which he absolutely hated and i hated giving it to him every evening i thing it caused him to have a massive flareup where he was on the toilet every hour morning and night. I told his consultant i never want to have to give him that medication again ever. They have prescribed azathioprine 25mg once a day but after reading the information regarding this medication i am to scared to give it to him also he can not swallow a tablet. The GP says this medication is not available in liquid form.
written by Marie
submitted in the Colitis Venting Area