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Ulcerative colitis in teenager

(5 Posts)
CalebWomble Sun 05-Nov-17 09:48:13

Hi - dd was diagnosed with UC in the summer whilst in hospital for a couple of weeks, after months of not being well. Steroids didn't help (apart from to get her eating again!) and she was started on infliximab infusions. She's also taking mesalazine and started azathioprine a month ago - the idea being that she can stop the mesalazine. She finished tapering off the pred a couple of weeks ago.

Anyway, colitis-wise she's symptom free which is amazing, but she's really low in energy and is catching everything going (has had 4 coughs/colds which each put her in bed for two or three days). School are being patient with her crappy attendance atm, hope that carries on. Do you think there's anything we can do to help with this?

She's had a flu jab, and she has a multivitamin plus extra B and D every day. (Her blood test at her last infusion apparently showed she was low in D - Dh didn't ask the number though. I'd actually done one of those home tests much earlier this year which gave her vit D level as 51 - adequate starts at 50 although most people still consider this to be too low - and she's been having vit D since then.)

My other thing at the moment is that her last period was in June we think - she couldn't really remember but at least 5/6 weeks before she ended up in hospital - and I'd sort of assumed that it would restart when she put weight back on, but it hasn't. Any experience of this? Is it the meds or the disease?

She has her next infusion this week and should be seeing her consultant then as well, so I will get dh to ask all these questions anyway. She was supposed to see her consultant last week but the dr wasn't there for some reason and she had a pointless five minute chat with a different consultant. This is complicated by the fact that she is getting her azathioprine blood tests done at a nearby hospital, not the one that's actually looking after her, and the nearby hospital don't seem to send her blood results through. And I really want to know what they are!

Anyway, that was a rather long introduction, sorry about that. Hello grin

MollyHuaCha Sun 05-Nov-17 22:24:55

Sorry to hear about DD’s UC. I’ve had Crohn’s (similar to UC) since my teens which was a few decades ago. Infliximab has been a game changer for me. I wish it had been invented when I was first unwell.

IMO, amenorrhoea is likely to be a result of illness. This still happens to me now when I have flares.

Re blood tests, I have a patient-held blood test result booklet for those taking thiopurine medicines. I have blood tests at my GP surgery, get a print out of the results and fill in the booklet. I take it to the hospital when I see my consultant.

When my Vit D was first tested, it was crazily low. I was told it would take six months of supplements to correct. Now I just need to continue with supplements to keep the level acceptable. I don’t have these prescribed, they are cheap to buy at Boots.

Re coughs and colds... yup, I catch those easily too, also food poisoning type illnesses when I have only eaten the same as others who don’t get any symptoms. I think it’s caused by the immune suppressing drugs. To me, rest and tlc seem a good approach for your DD.

She is lucky to have such a caring mum. When I was first unwell, my Dr said I had probably had Anorexia nervosa but strangely still didn’t refer me for treatment for it (I didn’t have this at all of course) and my parents said my weight loss/digestive problems were ‘all in the mind’ and I could get better ‘if I wanted to’.

Wishing your DD well. smile

CalebWomble Mon 06-Nov-17 07:15:42

Yes, as she slowly deteriorated we had a lot of "well, teenage girls do get anxious and there can be lots of reasons why they don't always like to eat much" because her bloods were coming back normal. Still got it from the dr when I took her into A&E. When she was admitted and the paediatric reg said she probably had an IBD I nearly cried in gratitude that she'd actually given us a reason.

And yes, infliximab is amazing! A week of IV steroids had no effect at all, one infusion of infliximab and she was showing signs of improvement within 36 hours. She's done 2, 4 and just nearing the end of this gap which is 6 weeks. She's getting a higher dose this week as she's put on so much weight grin

Mac12345 Tue 07-Nov-17 18:26:11

I have Crohn's, I was diagnosed as a teenager too. I had a month in hospital and was so unwell I couldn't even tell you what they treated me with! I imagine it was steroids.

I'm glad your daughter is doing better. With regards the energy I'd say make sure she eats a healthy diet as much as possible, I make a lot of smoothies to get my greens in and keep my iron up. Lots of rest too! My energy levels can plummet and about all I can manage is to lie on the sofa and watch TV.

Unfortunately catching everything going is part of it. Keep up with the immunisations and the multivitamins.

beckythomas Tue 07-Nov-17 20:59:49

Actually Ulcerative Colitis takes time to recover. Even after recovery, one needs to be in careful diet for a long time say 3 years. I suggest not to handle with too many meds but focus on diet. It worked for me. I have been having Ulcerative Colitis 4 years ago. I recovered with supplements (Vitamin A, B, D), Iron and plenty of fruits and yoghurt. Also, Broccoli works great as it has probiotics and calms the system. Hope these helps.

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