Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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GI Hemmorhage

Discussion in 'Gastrointestinal and Urinary' started by perrier, Jun 6, 2016.

  1. perrier

    perrier Senior Member

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    Is GI bleeding related to This illness.

    Any leads would be appreciated.

    The doctor now wants to do exploratory laporotomy.
     
    Last edited: Jan 7, 2017
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  2. TigerLilea

    TigerLilea Senior Member

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    No, hemorrhaging is not a symptom of CFS/ME and should definitely be checked out. This could very well be why she is so fatigued. Good luck to your daughter.
     
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  3. Kati

    Kati Patient in training

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    Hi @perrier it sounds horrendous. I am very sorry.

    Hemorraging is not a typical symptom of ME and it might well be a much different problem that deserve further investigation.

    Did she have endoscopy, on either ends of the GI tract?

    Sending best wishes. There are guidelines for anesthesiology for ME patients. I particularily like Dr Lapp's one.
     
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  4. Hutan

    Hutan Senior Member

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    @perrier, I liked your post in order to convey my sympathy - but liking is of course not appropriate for your news. Your daughter and your family are having such a very hard time of it.

    (@TigerLilea, I'm not sure that the bleeds aren't related to ME/CFS. There is a thread here on PR where a number of us have had GI bleeding. Although, of course, it should be checked out regardless.)
     
  5. perrier

    perrier Senior Member

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    When will this nightmare illness finally have treatment! I sit with bated breath looking on at the work prof Davis is doing, as well as the Norwegians.
     
    Last edited: Jan 7, 2017
  6. Hutan

    Hutan Senior Member

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    @perrier
    Just a thought - checking out autoantibodies might be worthwhile. I watched a very interesting video posted somewhere here just a couple of days ago. I think it was a British female professor who has been identifying autoantibodies in a number of people with intractable multi-system illnesses including psychiatric symptoms - and treating them with some significant success. Someone here may be able to point out where that video is - I can't find it.

    She might be worth contacting; she seems compassionate and likely to take a moment to reply. Perhaps she could point to someone nearer you who could do similar testing.

    One recognised cause of GI bleeding is autoimmunity (perhaps we discussed that on the other thread about GI bleeding).

    I and my son are in that in-between zone where we are sick enough to have no energy to chase long shots and are not so seriously sick that we feel a pressing urgency to find an answer regardless. So we wait. But it sounds as though you and your daughter need something quickly.

    Wishing you better times.
     
  7. Justin30

    Justin30 Senior Member

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    I have had GI issues but not like this. I have heard of ME patients getting Ulcerative Colitis and Crohns but I dont know their stories only brief Bios.

    I hope they find the answer to this @perrier. And I'll send a prayer your daughters way.

    Justin
     
  8. perrier

    perrier Senior Member

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    Thanks everyone. The other question I wonder about, is can hydrocortisone cause these bleeds.
     
    Last edited: Jan 7, 2017
  9. perrier

    perrier Senior Member

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    If someone know who this is, please post.
    I find it hard to believe that the bleeds are not somehow connected to this horrific illness.
     
  10. Sushi

    Sushi Senior Member Albuquerque

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    There are several thread here on auto-antibodies. If you check who posted on those threads, you'll have your answer!
     
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  11. Kati

    Kati Patient in training

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    Hi @perrier, Steroids in general can cause stomach ulcers. Here is what a quick search yielded

    http://bmjopen.bmj.com/content/4/5/e004587.full

    It would be best you discuss concerns with the treating physician. Any consideration to stop steroids should be decided with the physician because these usually need to be carefully slowly tapered down. I have had to taper off Cortef myself and to be honest it was not a walk in the park but that is just me.
     
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  12. kangaSue

    kangaSue Senior Member

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    Just bumping this. Can anyone tell me where I can find this video about autoantibodies, searching for "autoantibodies" doesn't help find it.
     
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  13. Hutan

    Hutan Senior Member

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    found it in my youtube history

    Edit - not to suggest your daughter has the symptoms of those particular case studies @perrier . It's just that when I saw that video it made me think that autoantibodies seem to be able to cause all sorts of problems and it seems a path worth investigating. Has your daughter had any prednisilone?

    BTW Would love to have that Suzanne O'Sullivan sit down and watch the video.
     
    Last edited: Jun 8, 2016
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  14. Hutan

    Hutan Senior Member

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    @perrier Have you seen Cort's latest blog on Health Rising about the IiME conference? It reinforces the likely importance of autantibodies in ME/CFS.
    e.g.

    The following comment on the blog was interesting.

    Maybe that Cunningham panel is a test you could get for your daughter somehow - perhaps by tracking down a PANDAS specialist? They might be open to looking for other autoantibodies too, if you showed them some of the research relating to this.

    Have a look at http://www.moleculeralabs.com
    They offer the Cunningham panel test to people in the US and Canada.

    Sorry if I am blathering on and/or you have already explored all this.
     
  15. kangaSue

    kangaSue Senior Member

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    Thanks for the link Hutan, not as informative as I hoped though.

    I've been looking into antibodies known to cause chronic GI dysfunction but can't say that I have come across GI haemorrhage as a symptom. I was looking to have Autoimmune Autonomic Ganglionopathy or it's restricted form, Autoimmune Gastrointestinal Dysmotility excluded as a cause of my chronic GI dysfunction.

    I fit symptom-wise but tested negative to ganglionic AChR antibodies, as is the case for 50% of cases but is the main qualifying criteria most doctors go by. A low titer of N-type Voltage-gated calcium channel antibody did show up but that's considered to be in the normal range, in those that don't have chronic GI dysfunction anyway. Can't convince the doctors that it might not be normal to have these antibodies in someone with chronic symptoms.
    Jonathon Edwards posted somewhere in another discussion about autoantibodies that the adrenergic and muscarinic AChR antibodies found in that study were probably just a marker of an autoimmune condition rather than a causative factor.
     
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  16. Justin30

    Justin30 Senior Member

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    Isnt bowel ischemia associated with substantial problems in the GItrack caysed by hypovolemia and POTS?
     
  17. Hutan

    Hutan Senior Member

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    Gastrointestinal Manifestations in Systemic Autoimmune Diseases
    [edit, sorry, left this off] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150032/
    Yes, it isn't big on details. I liked a few things about it though. One thing was that, in the case studies, treatment for autoantibodies seemed to bring about quite quick and significant improvements in people who were in desperate situations and had a wide range of symptoms.

    Maybe they are just markers, but if they are markers for an autoimmune condition, then perhaps treatments like rituximab can help?
     
    Last edited: Jun 10, 2016
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  18. perrier

    perrier Senior Member

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    Thanks for all this. One doctor suggested the Cunningham panel a month ago.
     
    Last edited: Jan 7, 2017
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It is difficult to advise on individual cases, however, I can make certain general comments.

    1. GI bleeding has nothing to do with ME as far as anybody knows. I would cross this off the list of thoughts.

    2. Corticosteroids are a common cause of GI bleeding but 15mg of hydrocortisone is a rather small dose. The question arises in my mind why your daughter is taking this? Even a dose of this sort in a child on a regular basis would normally be given for a very specific and well established diagnosis - and not ME/CFS.

    3. Angiography (perhaps with CT or an MRI method) in the bleeding phase is the best way to pin down bleeding. That has not been mentioned. Bleeding from small bowel in children is quite often due to a local haemangioma that may be easy to remove.

    4. Is your daughter under the care of a good university based hospital? This is a specialised problem that needs expert analysis. It is not the sort of problem that should be dealt with by doctors who hand out supplements to be honest!

    5. Autoantibodies have little or nothing to do with GI bleeding. I would cross that off the thought list too pretty much. There are some rare links like acquired factor VIII deficiency and ANCA+ vasculitis but these should have been flagged up early on and would cause other signs as well.

    Basically I think this has nothing to do with ME but it might have something to do with taking steroids. (Anti-inflammatories are another cause.)
     
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  20. Kati

    Kati Patient in training

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    I am so very sorry @perrier for your daughter's situation, it sounds just horrendous. I concur with our canadian health care system, it is just horrible. Here in BC my dr says there is a 2 years wait to see a GI specialist. 2 years! Unless you show up in emergency with an appropriately urgent condition, there is no possibility to see a GI.

    I am no doctor and I am in no way telling you to wean off the Cortef. It may be helpful it your daughter and in some patients it is helpful from anectdotes here on PR forums. But know that weaning off Cortef can induce depression an taking patients in a really dark place, so If this is something a doctor tells you to do, please do make sure that this weaning is done very, very slowly. Moreover it sounds like she is very severely affected, and her adrenals may not have been properly assessed. I hope she can be well taken care of by a knowledgeable endo.

    Sending best wishes @perrier
     
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