Hi bubbean,
I am so sorry your son got this diagnosis but having been there with my daughter when she was 12 years old I am glad to hear you have answers to your sons symptoms.
I agree to be very careful in what you read and take note that every persons journey who has IBD is different.
I myself made myself very ill with reading up on every worst case scenario all of which never happened with my daughter.
Your son will be given a treatment plan to suit the stage he is currently at on diagnosis. It maybe that you have a choice to do the liquid diet or steroids. For my daughter her consultant put her straight onto an 8 week course of steroids. Of course I read up on all sorts of awful side effects of steroids which started my journey on making myself ill. Those steroids were the best form of treatment for my daughter at the time and her gut became to heal quite quickly. After the 8 week course of steroids she was then put on fortnightly injections of Humira.
My daughter will be 20 years old in November and has now been on the fortnightly injections for 8 years. She went into remission more or less straight away after starting the injections and has remained in remission since.
Getting the diagnosis of crohns was never the diagnosis we wanted but on a very positive note my daughter getting that diagnosis has given her so many opportunities to become who she is today. She got her diagnosis when she had just started secondary school. She went onto sixth form at that same school and I am proud to say by the end of sixth form she received an award for 100% attendance other than time off for her hospital review once every 3 months for the 6 years she had completed at that school.
This last year she has done a gap year after achieving amazing A level results. Results that have got her a place at University this coming September. During her gap year she got a job at M&S which has helped her go to work at camp America where she is now. She has just done 8 weeks at a camp in New Jersey and absolutely loved it and has already had a confirmed place to go back to work there next year. She is now on a two week travelling break around America, she is having an absolutely amazing time. She will be home this Sunday and I can’t wait to see her.
A very long post but one I feel is so important to parents of newly diagnosed children with IBD.
I only wish I had read posts like this on my daughter’s diagnosis instead of all the worst case scenario stories that made me so ill myself.
Please don’t get me wrong I fully understand that there are children who have a totally different story and have been very ill and unfortunately treatment has not worked for them.
However what your son’s team will do is try their best to give your son treatment to heal his gut and then keep it that way so that your son can lead a normal active life.
That is the message I want to get across. My daughter has had a completely normal active life since her diagnosis, especially compared to the awful life she had the year building up to the diagnosis. She is just a normal young lady who goes out drinking with her friends and having fun.
Some of the groups are brilliant for support but all which I decided not to join because of the heartbreaking stories you can read on them. The one thing I did join that was the beginning of help that was good for our family was the children’s charity for children with IBD called CICRA. I do believe that CICRA helped our family on our journey to having a child with IBD. If you get a chance take a look at their website as the information on there especially to do with schools is so useful.
There is also a charity called Over The Wall, a charity for children living with a chronic illness. My daughter went on one of their 5 day camps and I truely believe it was that camp that put the motivation into my daughter to go out there and grab life by the horns.
Wishing you and your son all the very best on your journey on your son gaining a normal active life.