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20 year old daughter just diagnosed

Posted , 10 users are following.

alij1207
alij1207

Hi everyone, my 20 year old daughter has been bleeding for 3 months and following a colonoscopy has just been diagnosed with UC. She had biopsies which show infection and now we need to try to get this sorted as she is exhausted with losing so much blood etc. This is all very new so I would appreciate some help in knowing how to best help her. She is meant to go away to USA for 5 months at the start of January, will that be reasonable to consider now? My concern is we have more tests and specialists to see and need to get this first flare up dealt with so I really dont know if this is a good idea or not at this time? Any help would be appreciated, thank you

0 likes, 14 replies

14 Replies

  • eriikah95891
    eriikah95891 alij1207

    Posted

    Hi i am 23 years old and i have been diagnosed with ulcerative colitis since 2010 i now how stressful scary this can be. I have had a flare up almost every year and a few colonoscopy which sucks. As a matter in fact im having a flare right now with blood every bowel movments and im also 5 months pregnant! First thing she has to now i would say research on how this illness works from what to eat when having flares what foods to avoid. Stress can make it worst! And if she goes out of town in January im sure she will have it in remission just make sure to take medication how it is!
    • alij1207
      alij1207 eriikah95891

      Posted

      Hi Eriikah

      Congratulations first of all. How long is it likely to take to get this under control. We have to phone the doctor tomorrow for prednisone medication and she is on pentasa suppositories 1mg.

      What advice could you give us with diet etc and anything else which would be helpful at this early stage? It does seem a bit overwhelming at this point of all the tests. Do you manage to lead a fairly normal life despite UC?

      Thank you

    • eriikah95891
      eriikah95891 alij1207

      Posted

      Im actually on that medication my self prednisone 10mg i have taken it before and the past just make sure to drink milk or calcium vitamins heard they make ur bones weak in the future. Also let her know that when she has kids not to worry they come out healthy i already had a daughter while i had ulcerative colitis and she is healthy as can be shes 3 now. Its different for everyone to get it back in control it usually takes me like a month depends the symptoms and how severe it is.

      As far as dieting i try to stay away from cokes makes me super gassy and bloated also cheese since i am lactose intolerant and could make symptoms worst and from fast foods . I try to eat more veggies and fruits drink lots of water or Gatorade. Foods like fish,soups, chicken less oil the better.

      I haved lived a normal life its just wjen the flares up happen im just stuck in the house i dont like to go out to places due to the urgency of using the restroom. Thats when it affects my life cuz i cant go out with my family nowhere but its just temporary till i get it under control

    • alij1207
      alij1207 eriikah95891

      Posted

      That's helpful thank you. Can't believe but my daughter is very intolerant to lactose too. It will be a process of learning for us at this stage and I'm sure it won't feel so bad in a few months time when we at least know what to do. At the minute it's all very new to us. Great about kids though that's a relief. Hopefully we will get proper tablets soon to treat the infection.

      appreciate your help

  • Darasdad1
    Darasdad1 alij1207

    Posted

    Hi - I've been living with UC for 3 years. Flare Ups are awful and I'm currently going through a second this year. Until the first in June things had been calm and I had managed to live my life as normal. The symptoms were always there (different degrees of blood in my stool) and I had varying degrees of tiredness but generally I could cope. For a long time a combination of suppositories, enemas and immunity-suppressants controlled the situation. Steroids certainly worked well during the June Flare Up. They talk about getting the balance of medicines right and that it is different for everybody.  What I have found useful is keeping close contact with the IBD nurses when things go wonky. My advice would be to see how the UC reacts to whatever drugs are prescribed. With a little luck it may have cleared up by the time she leaves. Fingers crossed. Best wishes.
    • alij1207
      alij1207 Darasdad1

      Posted

      Thanks for your reply. Hopefully once we get her on meds this will help a lot. The tiredness seems lousy for her just now but i guess thats because of the level of infection and the chronic inflammation in her colon. We are awaiting our first appointment with the specialist. Do they do further tests or perhaps a full colonoscopy to see the extent of the inflammation in the full colon? I hope you continue to keep well
  • rob96807
    rob96807 alij1207

    Posted

    I have not experienced an infection before, but as far as the UC goes they should be able to get it under control by then so I would think she could go. Just FYI, "under control" is different for everyone. They should be able to get the bleeding stopped, but the amount of time you have to go to the bathroom daily varies.

    All I can say is make sure you get a GI guy in the US. The less you let it get out of control the easier it is to treat.

    • alij1207
      alij1207 rob96807

      Posted

      Thanks for your reply. Yes she would be going to the toilet 10-15 times a day, but often just feeling she needs to go and then cant. The xray showed her bowel is compacted so we are starting the laxatives again. I dont want her life to be restricted by this but the timing is unfortunate with her about to go away for such a long period but by then I hope it has all settled well. She is taking two weeks off her part time job as just is exhausted at this point. Feel for all who suffer.Thanks
  • daniel08796
    daniel08796 alij1207

    Posted

    Hi there has she been given meds to help with the flare up as soon as I started the meds I notice a different with in 48 hours. I have also cut out all wheat in my food if you Google food and uc there are no no foods I have found that doing this has helped my uc. I have been flare free for 5 months. Been a bit stress with work over the last few weeks and had a little flare going on now. So stress doesn't help at all. You really need to understand uc once you know the triggers you start to get you life back. Still live a good life. Of she is still in a flare try basic food for the moment ie rice/chicken

    Hope she feels better soon

    • alij1207
      alij1207 daniel08796

      Posted

      Hi Daniel

      She has literally just had the sigmoidoscopy and given pentasa 1mg. We are phoning our doctor this morning as we ended up in A&E and they said to get her started on prednisone. I think maybe it will be hardest at this forst point because its taken months to get a diagnosis so its badly flared up at this point and we know from the biopsies she is full of infection but hopefully once that is treated she will feel a lot better.

      Thanks for your help

  • Meltre
    Meltre alij1207

    Posted

    Hi alij1207,

    I am sorry to hear about your daughter, it can be very stressful but rest assured she will over come this and learn how to handle this. I am 26 years old and was diagnosed at 17. I live a normal life, I work long days and live with my bf. I am still taking 6 mesalazine tablets daily and I use suppositories twice a week. I have had no bleeding for I would say about a year plus now.. it comes and goes to be honest and as everyone said here stress does not help. I really recommend the suppositories as it will hit the inflamation directly and will help big time!

    A diet I would reccomend is Paleo - I have been following it since March of this year. Basically you avoid alot of foods which can be harder to digest and avoid junk food/ dairy/ gluten... but do read into it as there are plenty of food types you can eat and everything is healthy smile 

    Your daughter should be ok for January, she seems to have a great mum there to support her through this. smile

    • alij1207
      alij1207 Meltre

      Posted

      Hi 

      Thank you for your reply. I think we should look at trying to get the diet right but it is encouraging to hear that she will in time live a normal life as at this minute her life is far from that unfortunately. I wasnt prepared for how long it could take to get her better but the positive is the bleeding has decreased although still there. I think the biggest problem is she feels so unwell when trying to literally do anything apart from sitting down so going out to the shops, trying to work etc is very hard. I will read around the Paleo diet, thank you lol

  • Kinder1988
    Kinder1988 alij1207

    Posted

    Hi I suffer with UC my Dr tells me it's moderate UC. As my bowl movements happen between 2-3 each hour. I've been on 500mg asacol suppositories. They worked for me after a few days but I'm having a flare up as week speak really bad cramping and passing blood. But I've been prescribed steroids for 5 days today. Tell her not to worry and yourself, it's not nice thing to have but if your lucky the meds she's on now will work for her. I lead a normal life everyday I have a good job and a wife couldn't be happier. Like I said jist try not let it get at you, you can lead perfect life with it. Just make sure the meds are there for any flare ups, and she will be fine.
    • alij1207
      alij1207 Kinder1988

      Posted

      Hi thank you, thats good to know. I find it hard to think she cant live her life at 20 but your right this will pass and the docs will get it sorted. I think its the initial diagnosis thats not easy as we really are only learning but I know we will look back on this and be very grateful its not any worse.lol
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