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My 5-yr-old probably has ulcerative colitis - need reassurance

7 replies

Oodle · 19/10/2007 09:03

My five year old son has been having diarrhoea, frequently with bright red blood in it, on and off for the past year. The hospital initially suspected an infection but after another episode of bad diarrhoea and blood lasting for a few weeks, admitted him this week for an endoscopy and colonoscopy (cameras down his throat and up his bottom into his bowel).

The consultant thinks it is probably ulcerative colitis although he won't know for sure for two weeks, when the biopsy results come back. Other possibilities are Crohn's Disease and allergic colitis but he thinks these are much less likely. He thinks my son has a mild to moderate case of it (and seemed to be erring towards the moderate). He said treatment was initially aspirin and steroids to control it but it can't be cured. He also said it wasn't related to diet at all.

Normally I would be on the internet googling it, but I just can't face it. I have read stuff about this before and have hazy memories of bowel removal and colostomy bags and it all getting worse as time goes on but don't want to have my fears realised. Has anyone else got experience of this condition and could you give me some hope? Are there any alternative treatments? Is diet really not implicated?

Please reply!

OP posts:
MegBusset · 19/10/2007 09:26

Hi Oodle, my sympathies to your DS. I have pasted below my response to a previous thread on this as it pretty much sums it up...

I was diagnosed with UC about 4 years ago. Luckily mine seemed to be relatively mild, I have not had a flare-up in about 2 years.

Can't offer too much advice on dealing with a more severe outbreak, or surgery, but my experiences were:

  • My symptoms got much, much worse when stressed, tired or run down, so perhaps your DS can look into some relaxation techniques (yoga, reflexology, whatever works for him).

  • I found that steroids didn't help my symptoms and made me feel terribly stressed due to unpleasant way you have to take them. I went to a naturopath (recommended by a friend who has Crohn's) and they suggested giving my digestive system as easy a time as poss to help healing, this meant cutting out wheat and dairy, and caffeine, which I believe did make a difference in the reduction of my symptoms - might not work for everyone but might be worth a shot. I also took lots of multivits and omega-3 oils (in liquid form so easy to digest).

  • There has apparently been some research to say that probiotics can really help with UC, so might be worth a try. There is more about this in the book The Good Gut Guide by Stephanie Zinser, which is a really, really helpful book packed with info on dealing with IC, Crohn's etc.

  • I was fortunate not to need surgery but did look into it just in case, and it seems that these days it's really not as bad as you might fear - surgery does cure UC altogether and these days most colostomies can leave you with an internal 'pouch' rather than needing a stoma & bag, so you can basically carry on a normal life as before, better than dealing with all the pain and indignity UC can bring.

Hope that helps, and feel free to ask if you have any more Qs...

MegBusset · 19/10/2007 09:26

Also you can get lots of info and support from the National Association for Colitis and Crohn's Disease - www.nacc.org.uk

Oodle · 19/10/2007 13:10

Thanks Meg that's all really helpful although I wish I hadn't read the previous thread, especially about the woman's mother who died from Crohn's. Feeling more panicky now.

OP posts:
drosophila · 19/10/2007 13:15

My dad had bad doses of it three times but after his last bout didn't get it for years and years. His was very severe as well.

I always remember his was apparently related to stress. Back then he was told to remove things from his diet e.g Rhubarb (things that irritate the bowel) but as you know views change as the years go by.

weebleswobble · 19/10/2007 13:30

Oodle, ds2 was diagnosed with Crohn's almost a year ago at age 10. Initially under a Rheumatologist because JIA was suspected because of his joint swellings and pain, she thought is was UC when he started having diarrhoea and bleeding and referred him to Gasto. They also suspected UC and after the colonoscopy and endoscopy they still weren't sure until the biopsy results came back after 1 week and confirmed Crohn's.

I too had visions of colostomy bags. It's natural to fear the worst.

The NACC website mentioned by MegBusset is very good, as is CICRA - specifically geared towards children with Crohns and UC. I found that gearing myself with as much knowledge as possible made me feel better about things, but I know that's not the same for everyone.

The reality of everyday life for ds2 after steriods brought the Crohn's under control, is a daily dose of Azathioprine (immunosuppresant) and a mother that worries daily. Ds2 is in remission and bloats a few times a week which is being monitored by the Gasto team. If it causes bad pain or sickness he will have a barium meal to see if there's narrowing in the bowel.

Ds2 tells me off for enquiring about bowel movements at every hint of him visiting the toilet.

A pointer for school - if you haven't already got one, a toilet pass or arrangement set up whereby your ds can leave class to go to the toilet without having to ask is helpful.

MegBusset · 19/10/2007 13:32

Oodle, it is really very rare for Crohns to be fatal, and certainly if your DD is diagnosed with it she will be getting the appropriate treatment.

MegBusset · 19/10/2007 13:37

Oops I mean your DS

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