Attention parents of kids with ulcerative colitis

[Anna15]

Hi I'm new to this forum and so glad I found it. My son who has just turned 10 has been diagnosed with UC since Nov 2012. He has been on Oral prednisolone, Iv prednisolone,salasopyrin,salofalk and currently on Infliximab with little success. His consultant is now talking about surgery. Just wondering how children of this age cope with having an ostomy bag and would love to hear from other parents about their journey.

 

[polly13]

Hi Anna so sorry you had to find this forum and so sorry your lo is unwell. My daughter has crohns with a different presentation so I have no advice. There is a parents advocacy group called gutsykids www.gutsykids.ie if you go on there you might be able to connect with some other parents who have had a similar experience to your own. I wish you the very best

 

[CarolinAlaska]

I hope some of the other parents step up here. I know there are a few who have had similar surgeries.

 

[Devynnsmom]

Hi Anna, my 11 year old daughter has ulcerative colitis. But she has not had any surgery, so I have no experience or advice. I just wanted to welcome you and give you a ((((hug)))

 

[Anna15]

Do any of you have any experience of bruising with Infliximab. My son has had his third dose of Infliximab and just this past few days has a lot of unexplained bruising all over his legs. Not due to speak to GI nurse until Wednesday but extremely worried about this so think I may have to ring her tomorrow.

 

[polly13]

Lucy has never had this with infliximab. GI nurse should be able to help. Good luck

 

[poppy louise]

Hi Anna, My daughter has crohn's and is on inflixmab she bruises very easily just the slightest touch. During a flare she gets very painful bruising on her lower legs, this is called Erythema nodosum, hope this helps.

 

[Anna15]

Thanks Poppy it is useful to know that this is somewhat normal. I will mention it to the consultant on Wednesday. He is also very bad with painful joints wrists, knees and ankles. Thanks again for passing that on. Anna.

 

[rmk]

Hey Anna, if you would like to email me on [email protected] I can forward your email onto parents in a similar situation for you, sorry I haven't been on the forum. My son has Crohn's but there are many parents in the group who would have some idea of what you are both going through. I hope the consultant has some helpful advice for you, the Crohn's Forum has helped me so much in the past especially when Tadhg was newly diagnosed and we didn't know where to go. All my best rachel