Bleeding from pancreas and doctors ran out of options

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Hi all

I’m a 34 year old female with a constant low HB and I have to have weekly blood transfusions. After much investigation the doctors have found bleeding from the ampulla in my pancreas. I have had 2 angiograms where they went in and blocked 2 arteries which feed the pancreas in the hope that this will solve the problem. It did slow the blood loss but both times my HB has dropped again over time. After an entire year, the doctors at St. Thomas and King’s College hospitals are out of answers.

Has anyone else had problems where doctors did not know how proceed? How did you solve it? Can you recommend other specialists here in the UK - within the NHS or private? What about overseas? Any help is very appreciated!

Rebecca

 

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  • Posted

    Hi Rebecca

    I have just come out of hospital after having bleeding ftom from my pancreas ,I was transferred to the Royal Surrey Hospital ,Guildford , where they carried out an embolisation to stop the bleeding ,this was after I had had two blood transfusions , the royal Surrey has a specialist ,,Pancreatoc centre ,I was in intensive care there ,but they were fantastic to me ,back home now and recovering , I hope you find this helpful

    Best wishes Chrissie

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    • Posted

      Hi Chrissie, 

      thanks for your response. Can I ask what they embolised? 

      I have had two embolisations now blocking 2 arteries which feed the pancreas in the hope this will stop the bleeding. Is this what they did for you? Or something else? 

      Thank you

       

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    • Posted

      My bleed was in the pancreas itself , and they blocked the blood vessel with coils , is that the same as yours ,

      When I was in the royal Surrey they had patients from all over London and the south of England in there ,

      I was also told I can't have an MRI scan because of the coils , and now have to have an ercp which I'm a bit worried about having have been in hospital for over a month , this is truly a horrible illness ,

      Chrissie

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    • Posted

      Yes that sounds very much the same as mine. With the exception that the embalisation seems not to have worked for me. 

      I think it would be worth me speaking to your doctor if he has seen this before. My doctors had not.

      Can you send me the name or your specialist? I can ask my doctor if he can refer me

      I haven't been told about MRI scan issues but that makes sense. 

      Agreed this is horrible. I'm on my 20 something blood transfusion now.

      Thank you

      Rebecca

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  • Posted

    They may be aware of it and I don't know if this helps the doctors in any way Rebecca but there is a report of apparent effective treatment here ........... https://www.ncbi.nlm.nih.gov/pubmed/24622075

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    • Posted

      Thanks Stuart, I've sent to my doctors. It looks as if the treatment worked for the people in the test... My nurse is going to find the full article and see if he can contact the authors. 

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  • Posted

    Hi Rebecca,

    Just to say, don't give up. Sometimes things can seem intractable, but for every 

    problem there is a solution.

    Regards,

    Pete. 

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