Anyone for a IBD parent support thread?

[Isthatarealname]

Hi, I have a DD aged 9 diagnosed with UC in August. She's recently finished steroids and whilst she felt amazing on them she's suddenly gone into horrific flare. She started infusions last week but no sign of them working just yet.

I wondered if there is any other parents who want to support each other? I am really struggling with this flare. She is unable to go to school at the moment and I am just crashing thinking about what her future will look like. I have friends to talk to but no-one really knows IBD like the people experiencing it.

Hi OP, bumping for you.

I was diagnosed with UC early this year and it took a while to get my flare under control and I was quite poorly for a while. Once you get medication that works though, you can feel like normal again.

I know I’m an adult with a diagnosis and it’s very different to having a child diagnosed and I would be worried as well. I have no advice apart from that it’s a bit of trial and error with medication and to keep in close contact with your DD’s IBD team if you feel it’s not working for her.

Hoping another parent can come along with a bit more experience and support.

Thanks @Nosleepforthismum

Its really hard with the medication isnt it, you need to give it long enough to work but she is so poorly in the meantime!

Hi,

I am happy to chat. My 20 year old daughter was diagnosed with Crohn’s disease when she was 12 years old.
Steroids are great on diagnosis for easing the symptoms, they worked wonders for my daughter and then she went onto biologics.

So sorry to hear your daughter has gone into a flare since coming off the steroids, unfortunately this can happen for some once off them. It’s a terrible worry when they have a flare as the symptoms can be so unpleasant.
Try not to worry too much about her losing time off school, your daughters health is more important and she catch up.
Are the school supporting you, are they sending her work to do? She may not feel well enough to do it which I understand.

Has your daughters gastro team put a treatment plan in place? Can I ask which hospital she is under?

Have you been told about the children’s charity called CICRA? It is a charity for young children and their families who have IBD. They are such a useful charity and their website has so much useful information on there.
You can even give them a call if you just want someone to chat to who understands what you are going through or if you have any questions.

If you become a member your daughter will receive a toilet pass for when she is out and about and needs to use toilets in shops etc.

There is so much out there for children and their families who have IBD, many of which I can give you information.

Feel reassured that your daughter will come through this flare with the help of treatment. Then hopefully like my daughter will go on to live a normal active life.

As I said my daughter is 20 years old and I am sure having crohns is what has made her the strong young lady that she has become. She is currently in her first year of uni away from home after having a gap year where in the summer she went to work at camp America and had an amazing time.

There is a parents IBD Facebook too. I have never joined it as I do find with groups like that you have to be prepared to hear about some of the worse case scenarios with some of the stories. It may help you connect with other parents though.

I am more than happy to chat on here and to help with any questions or direct you to getting answers.

You take care and look after yourself. Xxxx

Hi, so since my last post she became a lot worse. She's under Southampton hospital and they are great but the infusions haven't worked just yet (appreciate they take 2-6 weeks), they've given her an additional infliximab and shes back on IV steriods but even these haven't worked yet (started on Thursday) so they are trying a week long course.

School have been fab to be fair and have given some work but she's not up to it just yet as she's in a lot of pain.

Yes we are members of CICRA, she's loved using the PALS. I think it might be worth a call as I am struggling. Financially hitting its toll as I am self employed and unable to work, we don't qualify for any benefits but as most of the country, our mortgage and outgoings is based on both of us working! Hard Christmas to come!

Sorry to hear your daughter has become worse.
So is she on infliximab now? Hopefully it will start to work, I know how worrying and frustrating it can be and you just want your child to be well again.
Glad to hear you are a member of CICRA, they really are a great team.
Give them a call, I did on my daughter’s diagnosis as I was really struggling. Their knowledge of the disease is so helpful for us parents. Xx

Hi, my daughter was diagnosed with Crohn's at 11. She is 15 now. Have you joined the FB group "UK parents of children with IBD" or something similar? It's very supportive.

My DD has had tummy ache today. This is unusual for her, she very rarely complains. I find it very difficult to maintain any kind of perspective and have been a mess all day. So I get it.