Getting colitis/crohns into remission

[Lookingforwardtospringster]

Dd15 just diagnosed with mild colitis and crohns after a bout of symptoms since November. They need to get it into remission and we’ll talk to the hospital next week about this. She has always been a faddy eater and I don’t think she’d cope on the shakes. She barely drank a chocolate one as it was thick and cloying. I personally think steroids will be the best but the Dr said the moon face doesn’t sit right with teenagers. The other option is an immuno agent and something else. What 100% worked for your child?

also how long do you think dd is likely to have had this? Is this likely to be why she’s been a faddy eater? She’s always been fussy since she was about 18 months. It took us ages to wean her off milk and eat solids.Drs have said they can maybe get her access to psychologist with her condition (I think she is also neurodivergent).

I have had proctitis myself but the meds have moved on significantly and I never had an endoscopy!

DS16 is going through this. He started on Mesalazine but it wasn't working fast enough for the medics, so he started on steroids temporarily. 8 a day for 2 weeks, then dropping to 7, 6, 5 etc. The idea being that it'll calm the immune response down and allow the Mesalazine to take proper effect.

We're into week 5 of the steroids and he's not had many side effects, if any. Certainly no puffy face, though TBH he'd lost so much weight he'd gone rather gaunt anyway. And it seems to be working as his calprotectin and other inflammatory markers are now within normal range, no blood in the stools etc. Obviously we'll need to keep an eye on it when the steroids finish.

PS the Mesalazine is granules which DS washes down with water. He says it's easy enough. Also ND and struggles with big pills!

Thanks. I did pharmacology and 100% feel she should knock it on the head with steroids. I took local steroids but DD has it throughout the bowel. Did your DS have any adjustments at school for exams? Dd is doing exams soon and hope it’ll resolve prior to exam time - first exam 30 April?!

We're just getting our heads around exam adjustments, as all this has only happened really recently! Our hospital is awesome though, they sent a letter to the school (fairly obviously a mail merge job that they have for all teen patients). Advising stuff like extra time, quick access to toilets, somewhere quiet and private to rest during the school day etc. So we'll see how that translates into actual action after half term.

Yes I’ve just mailed pastoral. I’m sure they’ll do the same. It’s not best timing as she has loads of folios and continual assessments she needs to do right now before March!

I feel you! DS is so fatigued still, I fear his mocks are going to be a write-off. I have to keep reminding myself that health comes first, but it doesn't stop me worrying!

Hi,
y daughter was diagnosed aged 12 and she is now 20 yrs old.
I am a great believer that IBD gradually creeps up very slowly, which is slowly causing inflammation. My daughter was also a very fussy eater and I do think it is a common thing. I reckon she had it for a fair few months before we got it sorted thanks to our GP who dismissed all my concerns.

My daughter’s inflammation was very high at 1800, normal is 50 or below. She started a course of steroids which did her the world of good and I gradually got my daughter back. Hwr side effects were very hungry all the time but I didn’t care about that it was lovely to see her eating well again. She did get the moon face a little but she had lost so much weight so again lovely to see.

The steroids healed her gut well and she was then put on Humira fortnightly injections that we did at home. My daughter will be 21 this year and she has been in remission since that first flare. She is still on the injections and I can honestly say she has never had any crohns symptoms since hwr diagnosis. I know that it is not a cure she will always have crohns but I will take that. School were very good once informed them of the diagnosis and I always made sure I did my research on anything she was entitled to when it came to school and exams. I always made sure I was one step ahead and informed the school with any help she was entitled to.
There is a children’s charity called Cicra, it is a charity for children and parents whose child has IBD. You will find everything you need to know on there for you to give to the school. It is for young children up to 18 years old.

Happy to help you with any questions etc that may help you.

Thanks. Fast forward a couple of weeks and DD had an MRI and Xray. They said the inflammation was mild in upper intestine and they seemed to wonder if she should be on biologicals. They had a team meeting and all agreed to use adalimumab so she’s started on the first dos about 10 d ago. Early days but she goes back for second dose next week. Another trip and they’ll probably do tests to see if the biological is helping and then hopefully leave her to her own devices. Exams start on 30 April and so I allowed to go to bathroom during exams with clock stops. She’s at canoe camp this weekend. Wait and see just now!

My experience as an adult with UC is that the rectal meds were a game-changer.

Because I struggled to get into remission I was on steroids for longer than I should have been, followed by Mercaptopurine (immune suppressant) for too many years - according to my consultant.

I was also taking oral mesalazine throughout, but couldn't cope with them alone.

I've now been in remission for 6 years just from using Salofalk mesalazine suppositories. I initially started on foam enemas, but switched to suppositories.

I hope OP's child has seen some improvement by now. Best of luck for the exams!

Turns out that DS improved his latest mocks (versus last November) by one or two grades! And he seems generally sparkier (and fatter/better muscled, which we're really grateful for because he was significantly underweight). He still gets a bit of stomach ache but the bloody diarrhoea has completely ceased. Follow-up soon ☺️

Thanks everyone! Yes the stress has caused mine to flare so been using budenofalk but think I should get another assessment as it’s been years since I went to the hospital! Great to hear about your son moggernagger. My DD has always been a picky eater so I’m delighted as a part of this diagnosis they are getting her access to a dietician and a psychologist to try and help!