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Thread: Sick & Tired

  1. #11
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    Thank you, from the bottom of my heart, Michelle, Debbi, Rose, pfries and the all the others. I couldnt have make it without your support and kindness and wisdom. I love you.

    Day 3 after rtx I still had low fever in the morning with some red rash, body aching all over, nose & ears aching, less coughing, stomach less crazy although not calm. Tired like hell but better then yesterday. Yesterday I also had that feeling of heart beating with force in the chest, a feeling that my cardio dr. said that can be an indication for an infection going on somewhere in the body.
    No idea how much of all those are because of a virus, germ, some infection, reaction to rtx, wg smoldering (or flaring ??) others, or all of the above....

    Debbi, the only months that my wg was not active were when I was with my beautiful Phil. God allowed me to be healthy enough in order to be able to take care of my sweetie. The night that he stopped breathing, my stomach became crazy again and when I was back to Israel the diarrhea didnt stop for some time.

    I will ask the dr about the tape worm. Never heard of it. Thanks for being so thoughtful. Good luck at your gastro dr. on Wednesday. Please update us.

    Michelle, is there a way to connect me with the aussie with the vasculitis in the bowel ? On the messenger or facebook or email ? If he will be willing to share info with me.

    I know for years that I have colon involvement. It just became too bad, so not sure if its a new issue or a flare which refuses to calm down.

    The infectious diseases dr. that I am going to see tomorrow was one of those who scratched their heads when my wg started... will be nice to meet him again. He was one of the good ones.
    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.

  2. #12
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    Hope you get some answers soon Alysia - hang in there, you're stronger than you think!

  3. #13
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    Good luck tomorrow,let us know
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #14
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    Alysia, I don't have any insight into your problems, I wish I did, but just know that I am thinking of you and praying that you are given some answers and something that will help. It's hard to think of you living with that every day. Is there a kind of doctor you could see that you haven't yet, maybe a gastroenterologist? Of course he would have to know something about Wegs. Could you have Crohn's? I'm not sure what the differences are between that and Wegs in the bowel. I just hope the best for you. 💞💞💞

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Oops, just saw above that you ARE seeing 2 gastro docs..
    Well, I sure wish I could be of some help... Love you💗

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  6. #16
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    Hi Alysia,

    So sorry to read of your current situation but I think Debs may have touched upon something with regards to the "Stress" factor; I am pretty sure stress was one of the "ingredients" with my onslaught of WG and we all know how much you have endured the recent years.

    I do hope you get some answers soon as we all know the relief that comes with that. Wishing you better days ahead.

  7. #17
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    Alysia,
    I am so sorry you have to go through the awful stomach pain and problems. I do think that you are under a lot of stress,but there should be something that can help you ease your stomach issues. I know that you are having a rough time with the aftermath of RTX and maybe that is making things worse. I just want to tell you that my doctor and I have decided to cut my dose in half, because of me getting to many infections afterwards and not being able to recoup from them. I will now only do 500mg every 6mos, followed by 3 months of antibiotics. I really hope you find an answer soon. Please take care of yourself.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  8. #18
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    Thank you SO much, Jules & Anne & Debbi & Jana & Geoff and all the others. I love you.

    I had fever in the middle of the night, and in the morning again damn crazy diarrhea.

    I saw the Infectious Diseases' dr. He said that it can be a virus: CMV colitis. He checked in my blood tests and untill 2012 I was negative for cmv. So maybe that's it. Will do blood tests and also ask the gastro dr. to see if its possible to check the biopsies. He explained that it needs to be checked in a molecular level of searching for the DNA of the virus. (If I understood him correctly).

    Anne, the gastro dr. ruled out Crohn's.

    Jana, are you on any other med in addition to rtx ? For me its only pred and rtx. I need to get the second round next week. The infectious diseases' dr. said that the colitis might be wg and not something else. So I dont think I will give up on another 1000mg because it might be a flare also. On the other hand, if its a virus then I better not... ??? No dr. can tell anything for sure...

    Thank you all for being here. 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.

  9. #19
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    I know most everyone seems to get rtx on a regular basis. I have only had 1 infusion. But maybe its just me , but my gosh , that stuff comes with SO many dangerous side effects and its takes awhile to actually work. Do you think maybe its too much.
    I'm sorry you didn't get any answers today that you needed. MAYBE it is a little bit of the flu right now ...with the fever and other issues. I hope Michelle's friend can maybe help that has the wg in the colon. Keeping you in my prayers. Have some chicken soup and go to bed !
    Life isn't about how you survive the storm, but how to dance in the rain !

  10. #20
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    I just chatted with the aussie weggie with bowel involvement that Michelle connected me with. Thanks again Michelle. You are so kind and I love you.

    The lady said some important things so I write it here, maybe it can help others. It sure helps me.

    She said that vasculitis in the bowel can be detected only if they remove a section of the bowel and analyze it. She said it was not her case. Her diagnosis was clinical. She also had diarrhea and pains, was better on steroids and flaring when off them. She had high inflamation markers in her stool samples (which I also have). Her dr. rulled out Crohn's, ulcerative colitis and infections. (Which is also my case, except for the last test of cmv colitis which I am still waiting for the results).

    Her info came in perfect timing, because I checked about my biopsies yesterday with the gastro dr. and it turned out that the pathologist didnt check them again yet AND that I will need to pay for that (I already paid to the gastro dr. enough money.. ). So checking the biopsies again is useless.

    So far it sounds like it is wg flaring in my colon.

    My best conclusion of today is that:

    A fellow weggie can help you hundred times more then any dr.

    Thank you all for being here.
    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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