Looking for answers... concerned mum

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My daughter (17) is newly diagnosed with Chron’s, after so long watching my vibrant girl suffer, finally a calprotectin result showed 1296 reading and she was admitted by ambulance to hospital. Where she spent a week, got the most needed colonoscopy and was treated acutely. Since October she has only had slight improvement for the shortest of time, and is now on her second round of steroids. She has also been put on octasa since being admitted. As we are so new to all this, I’m after some answers from people who know what it is like to live with Chron’s and the side effects of the diesese itself and the medication she is on. (We are seeing consultant again in Feb and there is talk of immunosuppressants) currently she is experiencing hair loss which is causing her deep distress, she is fatigued (anaemia has been treated with an iron infusion) night sweats, rectal bleeding, mood swings and the change in face shape (this did go down between stopping and restarting steroids) she also has intense pain at times and is still up frequently through the night despite eating a very plain vegan diet....

I just feel so helpless, i continuously say “I’m sorry I don’t know the answer to that, but I’ll try and find out”  I don’t know what to do to help or say, she worked so hard to get her gcse results despite being unwell and to see her curled in bed, having had to postpone college and going from being a social butterfly to rarely going out is heartbreaking. I do try and be really positive around her, and I am so proud of how she is handling it all, but I’m a little bewildered by it all. Any advice (especially about the hair loss...all she is dealing with and this is the thing that’s she is finding the hardest) will be most gratefully received.

Thank you x

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6 Replies

  • Posted

    Try to tell your GI doc as soon as possible, tell him of all the side affects and ask for a different steroid, there are many types out there, it's all trail and error until they find the right one, best of luck 🤞

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  • Posted

    Hi Jane

    Very sorry to hear of your daughter. It takes be back to when I was 17 and had the same problems - I am now 74! Luckily for you there are better meds than there were over 50 yrs ago. I was on steroids but they were just a temporary solution and had no lasting effect. We now have immunosuppressants which I am now on. They are a better solution but take time to become effective when you first start. I also had hair loss which is a consequence of the illness and the hair grows back when feeling better. I don't think the steroids would cause it. I do find that controlling diet helps a lot and is usually a case of trial and error. If your daughter is vegan that limits things a bit and I find reducing fibre is key. Personally I steam vegetables for 10 mins as cooking for less time causes inflammation and then I am not absorbing the food well. I also avoid spicy food. Best of luck.

    Patricia

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  • Posted

    I’m so sorry you & your daughter are going through this. Crohn’s is one hell of a disease! I was officially diagnosed at 11, but got sick at 8. I’m now knocking on 40 & dealing with a flare again after 20’years remission. It’s yukky so I feel your daughters pain. 

    Hopefully they’ll get her on the right path with medications & she’ll start getting her life back. As to the hair loss, that is hard, especially so young, I started loosing my hair on biological meds recently so what I did at first was pout & be cranky. Then I decided to collect it in a bag. Then I decided to get a whole load hacked off (my hair touched my bum & luckily was very very thick) so now it doesn’t look like I’m loosing it. It does stop eventually, in the meantime why doesn’t she get a haircut which helps make it less obvious? I hope they get her on proper meds soon & she starts to feel better xxx 

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  • Posted

    Thank you so much for taking time to responding, it’s good to hear from people who understand, it all feels a little bit of minefield at the moment. 

    Will share your words with my girl and speak with IBD nurse,  unfortunately the advice we have got from them so far is that she shouldn’t let Chron’s determine her life which is true but at the moment she is still unwell and coming to terms with it all.

    Vegan diet...she has been vegetarian for years, but found dairy is a big no no, and Eggs have had to go which is such a shame as they were a staple part of her diet...struggling a little reintroducing pulses, nuts and veggies! We will get there and knowing there is this forum where I can turn to and read others posts will be a great help.

    Thanks again and all the best x

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  • Posted

    Hi Jane

    So sorry to hear your daughter has been diagnosed with Crohn's, it is a debilitating disease when you are in a flare up.

    I was diagnosed at 18 and have had 2 major flares where no meds worked as my bowel had already ulcerated so have had 2 surgeries on my small bowel.

    I have worked my whole life and have had 2 children and although very challenging at times well worth the effort I have put in, your daughter should stay positive she can still have a full life but maybe just a little different.

    Everyone's journey with this is always slightly different so with your help she needs to research and gather information that may work for her and never stop looking.

    My saviour, other then my drs, has been working with a great naturopath, she helped me with diet and supportive supplements which you can become quickly deficient in and things to help with the inflammation.

    My suggestion with an acute flare, even if your daughter is vegan, is nothing raw cook everything it's gentler on the gut soups broths is what has greatly helped me, no grains, nuts or dairy, smoothies are good. Google is great for getting tips.

    Good luck to you to both and I hope things settle soon for her soon.

    Hugs

    Julie

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  • Posted

    Sorry to hear that your daughter is so poorly. Must be very upsetting for you too!

    I've had Crohn's since I was 19. Will be 50 next year. Yay! 😳

    I have tried all sorts of medications over the years and the only thing that has made a noticeable difference has been steroids. I ended up having part of my ileum removed in 2015 (I put it off for around 20 years) and, touch wood, I appear to be in remission. 

    I don't think anyone has mentioned the Nationa Association of Crohn's and Colitis Organisation yet.

    They are helpful for someone new to the disease and have local groups. I highly recommend taking a look at their site.

    As for diet? It's a tricky one for vegans.I'm vegetarian and from experience know that a bland diet including meat is always suggested!

    I have recently discovered HUEL which is vegan and a 'nutritionally complete food'.

    It is also low FODMAP, so easily digested.

    Because it is very high fibre they advise Crohns sufferers not to use it during a flare but once in remission it could be very beneficial. 

    They have a forum where many people share the pros and cons of the product.

    I have found it can have a laxative effect if I drink it fast but if consumed over 30 to 40 minutes there's no problem. 😬

    It may be worth investigating for when your daughter feels a bit better?

    In the meantime I hope that your daughter gets some medication that will help the symptoms. I sympathise with the steroid 'moon face' and hair loss. Not so bad for someone my age (even though it's still scary!) but not good for a teenager..🙁

    Please send her my love and say that we're all rooting for her!

    xxx

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