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Thread: Bowel obstructions or Perforations

  1. #51
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    Oh really ? That's so sad

  2. #52
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    😞 the simularitys are uncanny

  3. #53
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    Quote Originally Posted by mrtmeo View Post
    It has been the most horrible and frustrating thing that I have to know more than the drs to get proper care.
    I can't tell you how many times my mom would have died had I not intervened.
    I have spent years now, learning all I can about blood work and how to interpret what maybe causing what.
    We trust those who have all the data and resources and education to treat us properly, but so many slip thru the cracks.
    This is why I push to give others what I have learned, so they can understand what's going on with their care and not blindly trust.

    However, even knowing all that you can, might not be enuf when dealing with rare diseases like this one.
    All we can do is the best we can with the knowledge we have at the time.
    It is sad that sometimes too often a patient's survival depends upon upon the knowledge and skill of their family member who is acting as their advocate and directing their health care. I doubt i would have survived my initial treatment without my daughters presence and continual supervision or overseeing of my care for the weeks I was in ICU. She had contacts who kept searching and gathering info to help her discuss my treatment options with my treating staff who also consulted with several well known Weg experts to decide upon best care for me.

    Mrtmeo, your mom is lucky to have you as her advocate but like you say it is scary and upsetting that many without such an advocate won't survive their initial treatment or incur far more damage to their body that could have been avoided. Having a good advocate shouldn't be necessary to get good care but unfortunately it seems it often is necessary.
    Last edited by drz; 10-06-2014 at 02:26 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  4. #54
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    Quote Originally Posted by drz View Post
    It is sad that sometimes too often a patient's survival depends upon upon the knowledge and skill of their family member who is acting as their advocate and directing their health care. I doubt i would have survived my initial treatment without my daughters presence and continual supervision or overseeing of my care for the weeks I was in ICU. She had contacts who kept searching and gathering info to help her discuss my treatment options with my treating staff who also consulted with several well known Weg experts to decide upon best care for me.

    Mrtmeo, your mom is lucky to have you as her advocate but like you say it is scary and upsetting that many without such an advocate won't survive their initial treatment or incur far more damage to their body that could have been avoided. Having a good advocate shouldn't be necessary to get good care but unfortunately it seems it often is necessary.
    Drz,
    That is awesome that you had such a good advocate.
    It always makes me happy to see others that have someone helping them get the best care if possible especially, when drugs like prednisone can leave one not mentally capable to make a decision or are just way too sick.
    Your daughter sounds pretty resourceful and intelligent.
    You are lucky.

  5. #55
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    Quote Originally Posted by mrtmeo View Post
    Drz,
    That is awesome that you had such a good advocate.
    It always makes me happy to see others that have someone helping them get the best care if possible especially, when drugs like prednisone can leave one not mentally capable to make a decision or are just way too sick.
    Your daughter sounds pretty resourceful and intelligent.
    You are lucky.
    Two years later I saw one of the many doctors for a routine follow up visit when his partner was ill. He said I remember you. You had a very severe case and miraculous recovery, probably meaning I survived when it was very doubtful. Then he said you had an advocate that was very involved in your care and very effective, didn't you. He meant my daughter so she must have also left an impression. He also agreed I was very lucky to have had such an advocate.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #56
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    I wish I had that chance but everything happened so fast

  7. #57
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    Quote Originally Posted by dodi.houghton View Post
    I wish I had that chance but everything happened so fast
    You were her advocate and I'm sure there is nothing she wanted more than you by her side.
    Realize that even if you had all the knowledge, she might not have made it because this disease happens fast and can destroy organs very fast.
    By the time we are peeing ice tea colored urine, we are in end stage renal failure.

    People are aware of cancer, so when they hear the C word, they sympathize, but with vasculitis, it is so rarely known and so destructive.

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    Yes very true

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    Quote Originally Posted by dodi.houghton View Post
    Has anyone ever experienced any problems with obstruction or perforations? Or if anyone you know that has?
    Hi there Dodi. im one of those occasional posters but I stay up on them when I can.

    A couple years ago I had a bowel obstruction and I was in the hospital 14 days. I went in after suffering all night and then all day and went in in the evening. I was get vomiting and the pain was excruciating. I was throwing up things that I was sure I didn't eat and told the nurse that each time I vomited I felt better for a short. To be graphic, I told the nurse that what was coming up looked like feces! She assured me it was because I was backed up and it was trapped on the wrong side of the obstruction. Its a very serious condition and needs to be treated. They scheduled me for surgery a wee after I was admitted but began to pass a little gas just a couple hours before I was scheduled. I have had colon cancer, hence a resection and with my COPD and other health issues, they really didn't want to do surgery for fear of introducing bacteria to my medically depressed immune system. Im told that once you have an obstruction, there is a greater chance for a second at some point. I had scar tissue from my cancer and they felt that was partially causing an obstruction and feared cutting more colon would only bring on more attacks. That is my experience with a bowel obstruction.

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    I'm so sorry that had to have been unbearable

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