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

Don't feel guilty. My son's symptoms were chronic constipation. He was under a GP for two years and a "toilet training clinic" taking very large doses of movical because they said it was constipation!

Though I had heard of IBD, I really, at that time, didn't know much about it, so it never factor in my heard that his symptoms were crohns disease..

I hope things get better soon for your daughter and that you get out of hospital.

I dragged DS through various medical appointments when he was little concerned about the time he spent on the toilet. They eventually diagnosed "probably normal bowel habits" and discharged him. I do wonder whether symptoms should have been picked up earlier. It got worse in his teens and poor DS was worrying about bleeding for about a year before he told me or the GP :( As they get older they don't like to share every detail of that sort of thing with you and you're not exactly going to check spontaneously with them are you? So don't beat yourself up about that. Your DD is poorly right now because it's been untreated for looking while, but that means that once the treatment kicks in she should be a lot better.

Once her medication has kicked in and they find the right type for her she will get better. It's very much a trial and error thing, but she will learn what foods to avoid.

I've had colitis for most of my life but wasn't actually diagnosed until I was 30. I can have periods of remission for years and then have a flare which, only medication will get me out of.

This is a great resource: crohnsandcolitis.org.uk/our-work/about-us/ambassadors-and-family?parent=25107&page=1&tags=&category=&sort=#

I've linked to the page of celebrity ambassadors, most of whom have either Colitis or crohns. There are quite a few sportspeople who have IBD!

Try not to beat yourself up about it. A lot of the time the disease comes on really slowly without any symptoms,then something like stress can bring a flare to the surfaces. Although they say your daughter's Colon is quite bad it doesn't mean it can't heal.

For now for your own sake and your daughter's you could do things together for distraction whilst she is in hospital. Take in some crafts and games to do maybe.

Sending big hugs. X

Another one echoing not be beat yourself up. DSs crohns came out of nowhere it seemed, first thing I noticed was a fistula.
It truly is an invisible disease.

Apologies. My post was a bit blunt.

On the plus side she’s loving the hospital food now she’s back on solids and try’s a different meal every day, more than she’s ever eaten for years!

I have UC. It has phases of flare and remission. The development of interest and therefore research and new treatments in this area is vast so I feel hopeful for the future. There are already many more treatment options now than when I was diagnosed 13 years ago.

I have lived a completely normal life, but when a flare is severe it obviously does have an impact. However, with treatment your daughter should be able to avoid getting as ill as she is currently in future.

Oops, I meant to add that Google is not your friend.

For useful info you can refer to the NHS website, PatientInfo or the CCUK website however I would implore you not to join the CCUK Facebook group. I feel as though it really leans towards the negative and towards people for whom it has become a huge part of their identity and who change their diet and lifestyle disproportionately. This honestly isn't the majority and I know many people with UC who are working full time in demanding jobs, have a busy family life, who run marathons, who travel the world eating food from various cuisines and are generally very happy.

Thankyou yes I joins a fb group and almost immediately left again after finding the exact same thing. People trying to out do each other with their symptoms. I’m not strong enough at the mo to be seeing that.

Very good advice from the person who has advised you not to join ccuk forum, it does tend to be adults who only seem to want to share their stories when they are going through the worst of symptoms.
I actually made myself ill
when my daughter was diagnosed by reading these horror stories which lefte only thinking of the worse case scenarios.

My son got diognosed with UC two years ago and has been in remission since. In fact his non IBD brother gets more tummy aches than him!

whilst I know thjngs won't always been like this I have read so much over the past two years to prepare myself.

when my son got diognosed I fell apart. Was so anxious worried etc googled like a mad lady and scared myself silly.

plese join the Facebook group it is so supportive and I have learnt so much

look after yourself xxx

A couple of things to share with all us parents who have a child with IBD.

Over The Wall camps
A great opportunity for our kids to go free of charge on an activity camp with camps in many areas.
It is for children with illnesses. My daughter had a great 5 days at the summer camp. They dud wall climbing, zip wires, canoeing and much more. If your child doesn't want to go alone they also do IBD family weekends.

Make A Wish charity.

Also for children with illnesses who deserve a wish to be granted.
My daughter had her wish granted which was a family two day break to Alton Towers and water park.

God only knows our kids deserve to have something nice to look forward to especially having gone through tons of intense test to get a diagnosis.

Also like to mention with the charity Cicra for children with IBD they have a pen pal system where your child can have pen pals who also have IBD. This is a great way for our kids to talk to others who knows just what it's like to live with the condition.

Have a lovely weekend all.

Glittersmoke sending you and your daughter best wishes and hope she is on her way to recovery. Xxx

My DD was diagnosed with Crohn's in her first term at secondary school. I think she had it for several years but it got suddenly worse with the stress of changing school.

Since she was diagnosed 18 months ago she has gone from 4 stone 11 to 7 1/2 stone and grown 15 cm. She has also started puberty. She is on immunosuppressant meds too, but so far has been healthier on them than she was for years. My DD also kept spiking temperatures - ran at 37.5 all the time, and those last few months kept spiking to 39/40 for 48 hours at a time. It's only since she's been better that her temperature now runs at normal 36.4. I honestly think she was unwell for years.

I hope your daughter gets stabilized soon. Look after yourself. Once they find what works for her, she'll be SO much better.

Oh my goodness that’s just like my girl she’s under 4st at the mo no periods or anything like her friends.
I’ve really upset myself today thinking of stoma bags and infections ect so hearing this is fantastic thank you

Mumof crohnie my daughter was also diagnosed in her first term of secondary school. She was 4st 4lbs. 5 years on she is now 8st 5lbs grown to 5.6 feet tall. She also had very high temps mainly in the evenings.

My daughter is on Humira which she injects herself fortnightly. Since being on this 5 years now she has had no symptoms at all.

Glittersmoke i too made myself ill thinking about stoma bags. Wish I hadn't wasted such time thinking of thexworst case scenario.

Glittersmoke you can see pics of dd in this post. I hope it's reassuring.
https://www.mumsnet.com/talk/childrens_health/4741938-potential-ibd?reply=124940450&utm_campaign=thread&utm_medium=share.

Lbet thanks for your post too! DD is now about 5ft 2, I am hopeful she will grow a few more inches - but I am only 5:4 myself. No period yet but we must be quite close. She had no puberty signs at diagnosis (she had had breastbuds aged 10, but they disappeared when she was so ill).

We are just on aza ( Omeprazole and salofalk) at the moment - happy with that for as long as it keeps her steady. Thanks for you post, it's good to know there are a few of us around!

Did any of your children catch more common bugs like colds and sickness because of the drugs at all?

Are you in Scotland by any chance?

No to be honest my daughter hardly ever gets any colds. The whole household caught covid during the pandemic. I was really worried about my daughter having it, however put of all of us she had no symptoms with it all. She only did a test because we was all coming down with it.
At the end if year 11 she won an award for only ever having a few hours off now and again for hospital appointments. She was never once off school ill.

No more than usual. In fact fewer than before she started on aza.

My GP reassured me by pointing out that the reason I needed immunosuppressants was because my immune system was over active. The drugs should just bring it down to a good level, rather than making it 'low'.

Oh my goodness it looks like she may be home today!!!! So excited!!!

Fingers crossed that your dd goes from strength to strength now 🤞 Delighted she is (hopefully) back at home.