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Thread: Sick & Tired

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    Default Sick & Tired

    Hi.

    For many months now that I have constant crazy wattery diarrhea. I can hardly eat anything. I lost weight.

    Colonscopy showed "non specific colitis". The biopsies were sent for another check, no news yet.

    Many tests for certain germs came back negative. But the stool culture showed an infection, either auto immune or because of virus/ germ.

    I see 2 gastro docs (the second for nutrition) and they both scratch their heads. No idea if its wg in the colon or something else. But what ?

    I tried modulen ibd, which is a formula to treat Crohn's but after few days it also caused me even worse diarrhea.

    I also tried 2 antibiotics which were another disaster.

    Higher pred, like 10-20mg helps me to feel better. But I can't take so much pred all the time. Since all these started my eye vision deteriorated due to pred induced cataract.

    My wg dr. thinks that I have a rare germ in the colon that unless you look for it, you cant find it. Waiting for the biopsies. Not sure I can trust the docs here to find rare things.

    Yesterday I had my rtx. Usually I enjoy the 100mg IV pred and can eat some things without being worried. Not this time. Today I spend most of the day in the toilet. Feeling very sick. Also aching all over. Coughing.

    It makes me think that it is indeed germ and that the 100mg pred makes him stronger. Does it make sense ?

    All those months I also have lots of coughing (dry) and joints pains. But not sure if its wg. I dont have enough vitamin C due to poor nutrition and this can also cause joints pains.

    The coughing today was harder. Maybe it is related to the mysterious germ ?

    I am going to see an infectious disease dr. on Monday. How I wish that my sweet dr. Phil was around with his wisdom....

    Any thoughts and ideas are more then welcome. I am just exhausted.

    Thank you for being here. I love you. God bless you all.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  3. #2
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    I have no answers, but wish you peace as you continue to search for health.

    Sent from my SM-T800 using Tapatalk
    ----Arleta




  4. #3
    Bing505z is offline Banned for being a douchebag
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    Quote Originally Posted by Alysia View Post
    Hi.

    For many months now that I have constant crazy wattery diarrhea. I can hardly eat anything. I lost weight.

    Colonscopy showed "non specific colitis". The biopsies were sent for another check, no news yet.

    Many tests for certain germs came back negative. But the stool culture showed an infection, either auto immune or because of virus/ germ.

    I see 2 gastro docs (the second for nutrition) and they both scratch their heads. No idea if its wg in the colon or something else. But what ?

    I tried modulen ibd, which is a formula to treat Crohn's but after few days it also caused me even worse diarrhea.

    I also tried 2 antibiotics which were another disaster.

    Higher pred, like 10-20mg helps me to feel better. But I can't take so much pred all the time. Since all these started my eye vision deteriorated due to pred induced cataract.

    My wg dr. thinks that I have a rare germ in the colon that unless you look for it, you cant find it. Waiting for the biopsies. Not sure I can trust the docs here to find rare things.

    Yesterday I had my rtx. Usually I enjoy the 100mg IV pred and can eat some things without being worried. Not this time. Today I spend most of the day in the toilet. Feeling very sick. Also aching all over. Coughing.

    It makes me think that it is indeed germ and that the 100mg pred makes him stronger. Does it make sense ?

    All those months I also have lots of coughing (dry) and joints pains. But not sure if its wg. I dont have enough vitamin C due to poor nutrition and this can also cause joints pains.

    The coughing today was harder. Maybe it is related to the mysterious germ ?

    I am going to see an infectious disease dr. on Monday. How I wish that my sweet dr. Phil was around with his wisdom....

    Any thoughts and ideas are more then welcome. I am just exhausted.

    Thank you for being here. I love you. God bless you all.
    I hope you are able to get rest and start feeling better. It has only been 3 years for me with GPA, but I do feel I have success because I stopped taking prednisone.


    "The use of corticosteroids, including prednisone, are almost universally prescribed by medical physicians of every variety…general practitioners, family practitioners, internists, dermatologists, rheumatologists, gastroenterologists, urologists, etc. Corticosteroids are prescribed for numerous conditions that involve inflammation and/or allergic reactions including asthma, eczema, dermatitis, ulcerative colitis, crohns disease, sinusitis, iriditis, ear inflammation, bronchitis, nephritis, arthritis, bursitis, neuritis, carditis, thyroiditis and virtually every other medical condition including some cancers. It is the go to drug for medical physicians, along with antibiotics, as it will suppress virtually any type of symptom…but at what cost? The body protects itself against infection, toxicity, injury and other insults through inflammation. Despite what many in standard and alternative medicine would have us believe, inflammation is neither the enemy nor the problem. Inflammation is a constructive action purposely created by the body. It serves as a marshaling of the body’s resources and a key component in allowing us to recover from a wide variety of injuries and insults. To believe otherwise is to imagine that one of the most basic defense mechanisms of the body is a “mistake”… that the body is hapless in its actions and that we somehow know better. Such belief has allowed for the massive employment of not only steroids but also a plethora of other anti-inflammatory drugs obtained both over the counter and via prescription on a daily basis.Inflammation is a manifestation of the body attempting to normalize function, to repel invading organisms, to eliminate toxicity and to gather the body’s reparative forces to the site of injury. It is the result of adverse circumstances, not the cause of them. Whatever might be causing inflammation needs to be addressed and eliminated. When this is successfully accomplished the inflammation will go away as its services will no longer be needed. Put simply…address and remove the causes of the inflammation and the body no longer has the need to produce it.Our patients know that we are interested in renewing their health and vitality…not the mere suppression of symptoms that leads to further disease complications. The risks and complications of employing steroids are numerous and serious in nature and have adverse effects that can lead to a downward spiral in a person’s health and seriously lessen their opportunity for recovery. We continue to see numerous patients who have gotten on the corticosteroid train, often taking multiple steroid drugs from different physicians. A dependency on them is created that makes health restoration challenging.Steroid usage makes it difficult to determine what is occurring with a patient physiologically as steroids deviously mask underlying conditions. They make it more difficult to make an accurate determination of the causes of a patient’s problems both in terms of performing an accurate physical examination and in conducting laboratory testing. Steroids mask underlying causes while undermining a person’s normal physiological state."



    • Hormonal- By increasing the production of glucose from amino-acid breakdown and opposing the action of insulin, corticosteroids can cause hyperglycemia, insulin resistance and diabetes mellitus. We have seen patients who have developed diabetes in as little as a few weeks due to a course of prednisone administration.
    • Gastro-intestinal: The use of prednisone and other corticosteroids has led to the formation of gastric ulcers. When there are infections present in the GI tract steroids will exacerbate them. Steroids also lead to thinning of the gut lining which ironically can make the individual more susceptible to the very allergic reactions that they were given steroids for.
    • Metabolic: Corticosteroids cause a loss of muscle tissue and increase body fat in the face, resulting in "moon face," where the face becomes enlarged often making the patient resemble a chipmunk. Steroids also may lead to the development of tissue on the back referred to as a "buffalo hump". The body loses muscle tissue due to the diversion of amino acids to glucose. Steroids are catabolic in nature.
    • Lowered Resistance to Infection: The use of steroids leads to lowered body resistance to infections of all kinds including bacterial, fungal and yeast infections.
    • Skeletal Issues: Osteoporosis is a common side effect of long-term corticosteroid use. Use of inhaled corticosteroids among children with asthma may result in decreased height. We have seen numerous patients over the years whose long-term use of steroids has resulted in vertebral body collapse. One 55-year-old woman who came to our clinic, who had been on steroids for arthritis for over fifteen years had experienced vertebral compression fractures to five dorsal and three lumbar vertebrae leading to a height loss of six inches.
    • Neuropsychiatric: A wide variety of psychological/emotional aberrations have been related to steroid usage including steroid psychosis, anxiety and depression. Conversely steroid usage may cause a feeling of artificial well being referred to as "steroid euphoria.".
    • Eyes: Chronic use predisposes to cataracts and retinopathy.
    • Dependency: Extended use of steroids leads to increasing dependency upon them. The longer steroids are used and the higher the amounts employed, the weaker and more atrophied the adrenal glands become due to the degenerating effects of steroid replacement. We have repeatedly seen patients with autoimmune diseases e.g. ulcerative colitis, crohn's disease, and rheumatoid disorders who’ve become dependent on steroids leading to an ongoing downward spiral in their health status."

    Link: http://www.goldbergclinic.com/blog/2015/4/18/problems-with-prednisone


    I know we are unable to eliminate GPA, or what causes it, yet we also may have other issues where our bodies use inflammation as it should, and prednisone may interfere.
    Last edited by Bing505z; 03-18-2017 at 06:16 AM.

  5. #4
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    Alysia, do you have a fever along with your newer symptoms? It almost sounds like influenza.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Bing505z is offline Banned for being a douchebag
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    Quote Originally Posted by Pete View Post
    Alysia, do you have a fever along with your newer symptoms? It almost sounds like influenza.
    Prednisone can mask a fever...

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    Quote Originally Posted by Pete View Post
    Alysia, do you have a fever along with your newer symptoms? It almost sounds like influenza.
    Well, I didnt think that I have but after reading your post I checked and I do have, low fever.
    No idea whats going on. All those months and today...
    Thanks for your caring Pete, Arleta & Bing. You are very kind. God bless you.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Thoughts and prayers for you Alysia.

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    Sorry to hear that you are still battling with the bowel problems. Praying that you get some answers and relief soon.

    Rose

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    Bing that was a good article about pred, I wish I could get off it.

    Alysia,be careful taking to many antibiotics..that also takes away the good bacteria in your gut. It seems like you have been having stomach issues all the time. I wish you were able to come to the states or even somewhere else where there are better drs. I know my mother had crohns and they had to take about 20 ft. of her intestines but that was due to a blockage so with your issues I don't think you have that.You have been under a lot of stress and heartache since Phil passed on. Do you think that may have a little to do with it ??? I aslo have to go see the gastro dr.on Wed. I think my stress has caused an ulcer. I wish I had an answer for you but I will pray that your drs. can figure it out . Could it maybe be tape worm ???? I am just guessing.Let us know what they say and good luck.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Hon, this is not good to hear

    We just had a new member, in an Aussie group, that has been diagnosed with vasculitis of the bowel.
    I thought of you instantly and how your case (and a few others) have probably made it easier for people to actually be diagnosed now, instead of specialists saying that it isn't possible to have colon/bowel involvement.

    I know, personally, how hard it is for you to get the right balance of foods, to get enough vitamins, and unfortunately I have no answers

    I did read somewhere, that too much RTX can cause issues. I certainly hope this isn't the case for you.

    I hope the cough is better today, and that you get some help from your appointment on Monday.

    Know that we are all here for you
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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