Ulcerative colitis in a child

[Glittersmoke]

Hello
im very lost at the moment and I’m hoping someone hear can answer some of my questions
my 11yr old daughter has just been diagnosed with ulcerative colitis and is currently in hospital on Iv steroids and antibiotics
she lost a lot of weight very quickly and we thought we may loose her
i want to know wear she goes from hear?
realistically how will her life be effected? How often to flair ups occur? What side effects do the medicines use to suppress her immune system have and how does the condition effect everyday life.
I’ve talked too her gastro consultant and nursing team but I would like too know first hand experience.
thank you

It is all so overwhelming at the beginning. I have two children with Crohn’s (so same family as ulcerative colitis). I would really recommend the Facebook group UK parents of children with IBD as it is a fantastic source of support. Just knowing you aren’t the only parent in this situation is helpful.
It is so hard not knowing how they are going to be affected by IBD, the what ifs are the hardest. As for the side effects of the drugs, they are scary but untreated IBD is much worse for their health.

I have chrons disease which is similar in many ways to UC. They will look to fight the flare off just now and then they will look for a suitable medication which will hopefully bring her to remission. My friends son is on infliximab infusions - he is 14. I am on amgevita injections.
Once under control it is totally possible to live a normal (ish) life, we just need to listen to our bodies and learn what works and doesn't work as each case is different. I can eat anything now I'm in remission but another friend with UC can't tolerate spices for example.

Hope she feels stronger soon, it is a lot to get your head round at first

Thankyou
i just feel so incredibly sad for her
so is so slight it’s really made her ill. She’s been in the hospital over a week now,they are talking about iv medications every two weeks as an in patient. It’s all so disruptive for her and scary especially at 11 when you’re just looking at starting secondary school soon. My girl……it’s breaking my heart.

Oh bless. She'll get there though. I have (recently diagnosed) colitis and have been in remission since around last august. It took a while to get things under control as every time I tapered off the steroids it came back but my symptoms did stop in the end and I've been ok since bar one blip. I put myself back on a low dose and it seems to have worked.
I have a few other autoimmune diseases so they really don't like me being on steroids. The next step was going to be immunosuppressants but I didn't need them in the end.

Yes the immunosuppressants are what she’s being started on today. I just hope we are doing the right thing by allowing this.

I second facebook UK parents of children with IBD , they have fantastic advice on there.
My son was diagnosed with crohns when he was 8. He is now 22 so we have lived it a long time.

It can be difficult to start with to get your head around all this. You will have lots of hospital appointments and blood tests, especially initially starting on new meds. Keep asking lots of questions.
Let school know what is going on. I made sure they had all the information I could so they knew what was going to be happening.
Make sure your child gets a "get out of class" card for when needing the toilet. This would just be shown to the teacher, no questions asked about leaving the room.
We did have a few years of him flaring up before getting the right medication. He has now been on infliximab infusions [ a biologic ]now for 8 years, going 8 weekly for them, and is doing really well. He leads a very normal life of uni and work. To look at him you would never know he has this illness.

You ask if you are doing the right thing by allowing this? Honestly if you don't your child could become even worse. Untreated IBD can be life threatening. It is never easy giving permission to allow your child to be given strong medication, but once you start to see how much better they are doing, you will realise you have done the right thing.

Each person is different in how they respond to medication, so what works for one, may not work for another. Unfortunately with IBD it can be a bit of trial and error.

I wish you lots of luck and best wishes. This is a journey I think none of us want to be on.

Best wishes to your DD to get well soon, and to you supporting her x

I had a bad attack of Crohn's age 17 (at the time, it was thought to be UC) and was seriously ill. Unfortunately it wasn't caught in time and I had to have a colectomy and a temporary stoma with a pouch (the stoma was later closed). After this, I had 5 great years of total remission but since then it's been a mixed bag.

I've only actually needed a course of steroids once since then although I had a lot of antibiotics for pouchitis, but it was under-treated for years and I've ended up with a small fistula. I was then on an immunosuppressant treatment called azathioprine for over 10 years that really stabilized me and now (at 47!) I get very little trouble from it. I have developed other autoimmune conditions, type 1 diabetes and underactive thyroid. I also had fertility problems as a direct result of my operations, but I was able to conceive and deliver a healthy child.

In all, I've got a good quality of life and the treatments are much better these days so the prognosis for your DD is good. But should she need any surgery, do ask questions about fertility, because although it won't important to her now, it may be as she gets older.

OP, as scary as they sound, try not to worry too much about her starting on immunosuppressants.

I've been on immunosuppressants for Ulcerative Colitis for the last seven years and my quality of life is so much better than before. I'm no longer in the constant cycle of flair up, steroids, and flair up again when the effects of the steroids wears off. Haven't had a flair up since I started on them. The upsides in my experience far outweigh the downsides. Untreated UC can be life threatening.

Sending you and your DD lots of good wishes.

she was taken off antibiotics last night but back in them today as her temp went back up. She now won’t be coming out till next week. I’m struggling so much with this,I know she will be more.

I am so sorry to hear that!
Mine is 18 and was dx in January and ended up in the hospital in February.
It is very scary.But it will get better!
We are in the US so Idk if meds are different but has her dr mentioned one called zeposia?

My DD was 10 when she was diagnosed with UC and 13 when diagnosed with crohns

Initially it was terrible whilst they got her meds right and her condition under control. 4 years in and out of hospital on iv steroids.

I obsessed with finding out as much as I could. Every forum, medical article and Facebook group - I drove myself mad and concluded that everyone is so very different. They respond differently to different meds and have different levels of condition

My DD hasn't had s flare up now for 12 months. She feels invincible because she takes 4 tablets a day whereas her friends stress over taking any type of tablet eg paracetamol

As for her long term prognosis - we don't stress and medical science advances all the time and so we are grateful for all the good days and hunker down together with movies and hot water bottles on bad days.

It's hard at the start, but I promise you that it gets easier

You don't have much choice I'm afraid.

While this is true is it too hard to have a bit of empathy for a parent whose child has been diagnosed with a really horrid disease - or even if not say nothing.

@Zebee I'm a paediatric nurse. I've looked after many children with UC . I have a lot of sympathy for them. I have seen first hand just what a horrible disease it is. Hence why I say that the OP has little choice but to consent to the immunosuppressants.

My daughter has crohns and thank goodness she doesn't have a nurse like the above. What an unprofessional reply that was to a poor mum who is feeling so scared with her child's diagnosis. If anything it would of been really nice if you being a nurse could have given her some much needed reassurance and advice.

Glittersmoke whilst you are scared for your daughter's future know that she is in the best place and will be receiving the best treatment to getting her on the road to recovery.
My daughter was diagnosed with crohns 5 years ago and has been on immunnosuppresents ever since. There can be side effects from this treatment but my daughter has been very lucky and has had no side effects at all. She has had the most amazing active normal life just like any other kid.
You will get through this,it will take time but honestly you will get there as will your daughter.

We are here for you if you want to chat anytime.

Another paediatric nurse here, daughter diagnosed with Crohn’s Disease when she was 4 also had a rectovaginal fistula and now has a colostomy which in someways makes life a bit easier. She also needs subcutaneous immunotherapy which I administer myself x 2/week. She does have a learning disability which makes it easier for her if not for me. Good luck to you both and stay strong for your daughter.!

Just to add Glittersmoke there is also a children's charity website called Cicra. They were there for me on my daughter's diagnosis. I called them up and they gave me so much reassurance abd advice. They even got a volunteer parent to call me back and answer any of my concerns. They can also provide all the information for you to pass onto your daughter's school.
You will need to set up a health care plan for yiour daughter's school going forward. Circa can sendcyou all the information you will need for that.
They have a website so you may want to have a look at that for guidance

Let us know if you have other questions.

Such a horrible time for you, hope she responds quickly to the medication. It is scary, but they really work.
Ds was diagnosed with Crohns at 11 too, and ended up having an emergency bowel resection. He'll have a stoma and bag for a few more years. He's on his 3rd type of immunosuppressant now, they can become less effective over time.

https://crohnsandcolitis.org.uk/

Is a good resource too.

Thankyou so much for your replies I really needed to hear that she can have a normal life,she’s very active. It’s such a shock she never gets ill,never even been to the doctor before. And thanx for the info on the care plan.

DS was diagnosed with it at 19 - a really tricky age as he was just taking responsibility for his own health and trying to hold down an apprenticeship but struggling with urgent needs to go to the toilet, and I was trying to help him from a distance (not helped by COVID then hitting and interrupting all the diagnosis stuff he was going through)

He's never been admitted to hospital or anything over it and it appears now to be controlled completely with medication. He tried stopping the medication but it flared back up and he's now he's accepted that he just needs to stay on the medication. Other than that, his life is entirely normal. He's doing well at work and has just got married. Hopefully that's where you DD will end up once they've figured out the right combination of medicines for her and sorted out the immediate flare up.

Thank you for sharing fireyflies it is great to be able to share our kids stories like this.

Glittersmoke yiur daughter can definitely have a normal active life once the medication kicks in and she recovers.
My daughter slso leads a very active life and even more so since being diagnosed.
She us doing a skydive soon in aid of ccuk yikes.

Not sure if this helps but my Dad had UC and I remember him being very very sick (in and out of hospital etc ..) when I was very young. He did not have an attack for about 40 years after that. I am not sure what he did or didn't do to ensure he was attack free. He wasn't the most health conscious.

It’s so good to hear these positive stories Thankyou so much
shes still in hospital it’s been 10 days so far and she’s still on Iv antibiotics. Her colon is really bad they suspect she’s been suffering for years but only just picked up which I feel terrible about she never said! We have been treating her for constipation all this time instead 😭