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Stomach Exploded?

Discussion in 'Gastrointestinal and Urinary' started by SaveMe, Mar 27, 2011.

  1. SaveMe

    SaveMe *****

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    I was reading through me-cfs deaths on the memorial page http://www.ncf-net.org/memorial.htm when I came across a 20 year old named Glenn Marcus who died because "his stomach exploded".

    I researched heavily and could find no where in medical literature a name for this. I wonder what my GI doctor would say? Now I am wondering if some reported stories are just that,stories.

    Please tell me there are fewer deaths than what is reported.....just to comfort me if you have to.
  2. Boule de feu

    Boule de feu Senior Member

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  3. Boule de feu

    Boule de feu Senior Member

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  4. August59

    August59 Daughters High School Graduation

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    There used to be a term floating around called "Spontaneous Combustion". I'm not sure what it represented though!
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    SaveMe,

    You put us in a difficult dilemma! Best response I can think of...ask Nancy Klimas in your coming appointment. She should be able to put it in perspective for you.

    Sushi
  6. kurt

    kurt Senior Member

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    Sounds like SaveMe needs some perspective. And maybe B vitamins, magnesium, etc.

    This topic comes up on the forum now and then. Everyone dies eventually. CFS patients fare about as well as other neurological or GI disease patients, or diabetics, I recall reading somewhere that we live 10 years shorter than the average lifespan. And those patients who die younger are mostly patients who have something else besides CFS. There are young people who die every day of various causes, I knew one young man in his 20s who died of CFS, it was tragic, he had a reaction to going off a drug, and that probably killed him. But then I also have known young people who died of other causes, usually car or airplane accidents. More of my own younger friends over the years have died from accident than from disease, and that includes CFS patients I know. And I know people with CFS who are in their 60s and 70s. I am in my early 50s and have had CFS for 15 years now, and hope that the cure is found soon. But if not, there is really nothing I can do about it, so I keep working for a cure and hope for the best. Life will last as long as it lasts...

    The anxiety about everything in life is worse with unsuccessfully treated CFS. A multi-B12 therapy has dramatically lowered my anxiety levels. I think the real issue here is untreated anxiety and not the death rate of disease patients. Remember that people who are advocating for CFS politically must make CFS sound bad, and CFS is a bad illness to have. But while some CFS patients die younger than they should, that is not very many, certainly not a majority. People are not dying from CFS in large numbers. CFS is mostly a disabling disease.

    My suggestion is to take a deep breath and be glad that while we do have a chronic illness, at least it is one that gives us some time.

    Just a thought, spending too much time reading through the memorial pages sounds like a bad idea for some patients... Personally I don't read that stuff anymore, and try to spend my time understanding methylation, learning about how to fix my gut, things I can do something about.
  7. CBS

    CBS Senior Member

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    Kurt,

    While anxiety has never been my thing, I agree with a great deal of what I think you are trying to say: deal with the anxiety, the stress and the grief of what this disease is costing you. Also deal with the components of what ever is going wrong for you physically as you can (endocrine, immune, cardiac, etc). I've found that overwhelming myself or my doctors with more than they can deal with gets me nowhere (most doctors can treat a sleep issue and maybe on a subsequent visit a GI issue - OK, maybe the GI issue will take a while - but most are quickly overwhelmed by the laundry list of issues/symptoms that ME/CFS patients have).

    That said, my personal experience is not at all consistent with the notion that this is a disabling disease more than a deadly disease. I've had three episodes where the appearance of symptoms/pathology (twice directly associated and once indirectly associated with my ME) required emergency measures. According to one ER doctor, "we initiated life saving measures." These episodes consisted of the sudden appearance of florid diabetes insipidus (near cardiac arrest as a complication); septic shock requiring admittance to the ICU for four days and a month long period of dozens of TIAs A DAY, retinal detachment and what is now being recognized as possible CNS damage from wild spikes in my BP that were brought under control with medication. My cardiologist feels that damage to my nervous system continues to accrue leading to increasing levels of cardiac instability.

    I had ME for 13 years before it started to threaten my life. Up until 2008 I would have probably given a response very similar to yours. I wish that was still the case.

    As for GI issues, I've dealt with bloating, pain and other GI issues but I doubt I'll succumb to anything as dramatic as exploding. Nor do I foster any illusions that if I were to die tomorrow my death certificate would mention ME/CFS. I'd just be one more middle aged man who died prematurely from cardiac arrest.
  8. kurt

    kurt Senior Member

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    Good point, we don't all have the same experiences. Also, in many cases the serious health problems with CFS are not the actual CFS pathologies, but other medical problems the person has that are much harder to treat when a person also has CFS. I had DI also, but not as severe as you describe, sorry to hear of all those complications. The DI is now gone, I believe due to the methylation/B12 protocol I am following, and some natural anti-microbials perhaps.

    Which brings up a very good point, if you want to live a long life with CFS and live at the top of your capability, you have to be correctly treating your CFS symptoms. In my experience that is not simple, but also not impossible. Most of the deaths I know about with CFS could have been prevented if the person had been treating right. In one case it was untreated severe depression and mold illness, the man killed himself, leaving his family behind, very tragic case. He knew he was living in a moldy trailer and was not able to make the changes he needed to, went into a severe depression, etc. Another case that I already mentioned, the young man went suddenly off a neurological drug with known 'cold turkey' risks. That was just not smart, he needed to be patient and taper off slowly. Of course there are probably cases where people did all they could and still lost the battle. But there are many, many more cases I know of where CFS patients were calm and patient, did not believe everything their non-CFS-specialist doctors told them, and gradually found gentle therapies that worked. In some cases I know of complete remission, in others like mine, only partial remission. Yes, there are some sad stories, but also there are successes, and I think it is important to CFS mental health to keep a balanced view.

    IMHO, it is failure to accept having CFS and failure to learn about how to survive that is the greatest risk to CFS patient health. And this is not easy, I had a hard time accepting the dietary changes, for example. Took a few years but eventually when I accepted that my digestion just could not tolerate anything but very simple challenges, and went on a good, safe CFS diet, my health started to turn around. (I use 'The Body Ecology Diet', there are probably others that work as well).
  9. insearchof

    insearchof Senior Member

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    No we don't have the same experiences, nor do we all have the same medical complexities because the definition of CFS is so wide. So dietary modifications might give some great improvement but not bring significant difference to over all functionality and underlying problems for others. Also, some have tried everything going round without success, so its not always a matter of failing to learn and apply alternatives. There are also others who do not get adequate care and or testing to address all relevant health issues either.

    I don't know that there are any studies on mortality in CFS or if they exist are few and far between which is why CFIDS started the memorial board I believe.

    I also believe it was Nancy Klimas (though I could be wrong) who has stated that this illness shortens the average life by 24 yrs.

    But as Kurt pointed out, none of us have any knowledge and or control over death, some of us will leave this earth as a result of accidents or other causes. Therefore, give little attention to what you cannot control and focus on what you can ie attendance to health and enjoying each day. After all today is all we have and the reality is no one will get out of this existence alive :)


    ISO
  10. kurt

    kurt Senior Member

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    That number, 24 years shorter, was the average age of a group of reported cancer deaths among CFS patients. So that is not generalizable to the whole CFS population, and it is not a longevity study.

    None of the death rates reported are based on any actual longevity studies in the CFS population that I am aware of. There was a study in 2006 of the average age of death of those who died from three causes, Cancer, Heart Failure and Suicide, and the CFS deaths were much sooner than general population, about 24 years younger than average for Cancer and Heart Failure, and 9 years younger for Suicide. But that is an age of death number for those who died, not an average lifespan statistic for the CFS population as a whole.

    The actual overall longevity of CFS is unknown, at least I have never found that statistic. But apparently CFS doctors say it may be about 10 years less than the normal lifespan on average, I think they are taking into consideration recovery and partial recovery cases as well as the sickest patients. But that is probably anecdotal.

    Exactly! The best way to increase our lifespan is to take care of our health, don't let ignorant doctors push risky treatments on us, and find something to enjoy in your life, maybe something productive you still can do at a low level (if that is possible). Getting a purpose in life has for me been a real lifesaver. Can't do what I used to do, but have found satisfaction in things I can do, a positive outlook is possible, even with CFS. But might take a lot of change. CFS is like a forced life overhaul.

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