Bleeding from the bowel — Scope | Disability forum
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Bleeding from the bowel

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I am looking for info/support/anyone with similar experience.
After feeling exhausted for a couple of months, my 30 year old son collapsed 4 years ago with a blood count of 39 (normal for a man is 120 to 140) He was given a transfusion of 4 units of blood and since then had had similar transfusions every 5-12 weeks. He has had rafts of tests - all negative and we still have no diagnosis. All we know is that he is bleeding from somewhere in his bowel but they don’t know where from. He has had so many transfusions it is becoming problematic and will get worse - We are worried the effect it is having on his heart. His last admission was last Wednesday when his blood count was 40 and his heart rate was 160. Feels like we are watching him fade away and nobody seems to be managing his condition - treatment is reactive rather than proactive and something needs to be done before we lose him.

Has anyone experienced anything similar?

Comments

  • Mandy_worried_mum
    Mandy_worried_mum Community member Posts: 3 Listener
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    I am looking for info/support/anyone with similar experience.
    After feeling exhausted for a couple of months, my 30 year old son collapsed 4 years ago with a blood count of 39 (normal for a man is 120 to 140) He was given a transfusion of 4 units of blood and since then had had similar transfusions every 5-12 weeks. He has had rafts of tests - all negative and we still have no diagnosis. All we know is that he is bleeding from somewhere in his bowel but they don’t know where from. He has had so many transfusions it is becoming problematic and will get worse - We are worried the effect it is having on his heart. His last admission was last Wednesday when his blood count was 40 and his heart rate was 160. Feels like we are watching him fade away
  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 20,250 Disability Gamechanger
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    Hello @Mandy_worried_mum Welcome to the Community. I cannot imagine what you are going through. It is not something I have any experience of myself. What are the Doctors saying they are going to do to find out what is causing this bleed? Have you had a second opinion from a different hospital? They might have done lots of tests but if they have not found the problem they need to do some more that would not be the first line they would  usually take. We do not give out medical advice but if another member has been through a similar experience hopefully they could tell you their experience. Fingers crossed 2024 will be the year the Doctors are able to give you a diagnosis.
    Take care.
  • Mandy_worried_mum
    Mandy_worried_mum Community member Posts: 3 Listener
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    Thanks for your kind words. He has had tests in 3 different hospitals and the specialists were working together initially, but for the past year or so there has been little movement - tests are scheduled the cancelled and it feels like ‘out of sight out of mind’ 
    It also doesn’t help that my son’s mental health is not the best - understandably - he is very private and is an adult - I wrote to PALS yesterday as we need support - really hoping to find someone else Who has experience of this.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @mandy_worried_mum

    Welcome to the community. Just to let you know, I merged your two posts together, so all your responses are in one place.

    It's great to hear the you have written to PALS, I hope they can give you the support. Can I ask, if they believe the bleeding is from the bowels, have they referred your son to a Gastroenterologist? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • MW123
    MW123 Scope Member Posts: 472 Pioneering
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    @Mandy_worried_mum
    Welcome to Scope I can fully understand why you are so worried. You've highlighted that the bleeding source from the bowel is unknown. Why is there an assumption that it originates from the bowel? The blood results you provided focus on the red cell count; do you have information on whether any of his other blood results indicate low levels?  
  • tracie_79
    tracie_79 Community member Posts: 2 Listener
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    @Mandy_worried_mum

    I just wanted to let you know that you are not alone - my 13 year old was extremely ill for 2 and half years (gradually over that time) and like you... I felt like she was dying right in front of my eyes

    We were back and forth to the doctors numerous times with no answers and then I googled her symptoms.... I wish I hadn't because they were symptoms of bowel cancer. 

    I'd had enough - and rushed her in to a&e and demanded every test possible inc what I know call the miracle test "a colonoscopy" 10 mins after having this, my daughter was finally diagnosed with 33cms of damaged lower intestines and the cause - A chronic life long Bowel Disease called Ulcerative Colitis.

    The consultant pulled me aside and said that if left any longer, my daughter would not be here. She is now a beautiful 18 year old and although is in a long term flare and on medication for the rest of her life.... She's still her 💜.

    If you son has not had a colonoscopy - then please push for one asap. Sending you and Ur family much love x
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
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    Hi @Mandy_worried_mum, I want to say that your son's story sounds a lot like mine. And you sound a lot like my mum did when I was ill.

    I came down with Crohn's at 19, it wasn't so bad at first but progressively got worse until I was being regularly hospitalised like your son. I actually collapsed on my way into London in Finsbury Park Station. While the symptoms started at 19 it did take 3-4 years to get diagnosis unfortunately. I know how worrying it was for my parents, I couldn't think more highly of you for what you're going through and the way you're supporting your son. I know I will never really be able to repay all the support they gave me when I was very ill, though they'd never ask for repayment either.

    Anyhow, my story has so far gone quite in the end, I received new medication that suppresses my immune system. I hope with PALS you can finally properly get on the path of diagnosis.

    It was a colonoscopy and MRI scan that finally had me diagnosed, I've also had one of those fancy new pill cameras so they can take pictures even in the small intestine. I would push for these procedures if your son has not had them already, it's gone on long enough, his doctors need to start doing more.
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

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    Opinions are my own, such as mashed potato being bad.

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