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My 14yo sister just diagnosed with severe UC

Posted , 6 users are following.

gemma0684
gemma0684

Hi all. I am looking for some advise from anyone, who has recently diagnosed or has been managing this illness for some time.

My sister is 14yo and was suffering with bloody stools since the age of 13. It was diagnosed that she was just compacted last year and was given harsh laxatives to flush her out.

All seemed ok until 5 weeks ago. She was passing gravy for stools and so much blood. She also started vomiting frequently this week.

She has her colonoscopy today, and doctors hurried us away from her to tell us her entire large intestine and colon/rectum are affected. She also has a very red stomach. Biopsies have been taken but obviously no results yet.

They are starting her on a 6 weeks course of steroids and have said it will be treated long term with immuno deficiency drugs.

They also hinted surgery may be necessary if the drugs are not making a difference, although I understand this may be said because it has to be.

Has anyone else has UC of the entire large intestine and colon, or is it actually relatively common for the entire area to be ulcerated?

I am broken inside for her but I also understand from reading some of these posts that it doesn't mean an end to quality of life.

However I haven't quite figured out how you convince a young teenager of this.

Anyone elses experiences / therapies that worked and/or didn't work would be greatly appreciated. Thank you all so much in advance.

Gemma

0 likes, 5 replies

5 Replies

  • Shal75
    Shal75 gemma0684

    Posted

    Hi Gemma, I can understand how you feel for your Sister especially as she's so young to be having this horrible illness.

    First let me tell you surgery is the last option if nothing else works.

    My whole large intestine was infected, I had 4 years on and off steroids and other medication to help and stop the bleeding. It's manageable with the right consultant but not nice. Steroids will get calm it down in the first instance but she will also put on weight and balloon. They also have enemas that she can use at the same time. I had to take tablets everyday non steroids to keep it at bay, sometimes it worked and sometimes I had a flare. But once the bleeding is under control maybe regular enimas and tablets would be a good idea. I forget the name but I will find out what they are.

    Don't get me wrong I went through a lot of medication to stop the bleeding and then I did have to have surgery as it was the last option, but that is the last option and as this has just been diagnosed I don't think they will rush to do that.

    Maybe you can look up some information on line and give it to her or introduce her to some forums....just check them out first as some are not great and will more than likely make her think her life is over.

    I hope things work out for you all, it's a horrible thing for a young girl to be going through.

    Let me know if you have any other questions. X

  • rose_smart57598
    rose_smart57598 gemma0684

    Posted

    Well I was diagnose with crohns but realy I had uc of course the boys club stopped them telling me until ten years later when I had a frozen shoulder and uc flared up so at least they have diagnosed her with uc so now im on mercaptopurine tablets and this medication is one that they use for uc but see how the steroids go and be give her positive words and good luck  
  • Shal75
    Shal75 gemma0684

    Posted

    P.S.

    I was on Pentasa tablets and they come in enema also, there is also a steroid enema.

  • pamela2016
    pamela2016 gemma0684

    Posted

    I'm sorry your sister has this horrible disease at such a young age I'm still learning even though I've had it for years just haven't had many flares til recently. I've found a website that's actually very helpful and many on their with this condition not sure if I can share it on here if interested you can private message me some on there is young teenagers might help her feel not so alone

    • sam31454
      sam31454 pamela2016

      Posted

      Hi I have uc of the entire large intestine and was wondering if you'd mind sharing that website with me? Much appreciated.

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