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Thread: Bowel Flare

  1. #31
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    It sounds like your appeal process is bit more daunting than what i have experienced. When my insurance refuse coverage for some med I need I check the box to appeal and and have my physician send a note on why I need it and they have always so far approved it. One time the pharmacy kept at it for three months to get it done but that was due to lack of response from my physician at the time so I had to replace her with one that is more responsive to my needs. Another doctor suggested the need for me to change cause I guess it was widely known by her peers that she was swamped by her caseload.
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #32
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    Hi All, like Rose I haven't posted in a while but constantly check-in to see how everyone's doing. Rose & Alyssia, I truly hope your symptoms have continued to improve and that you are getting some relief from meds.

    I too am experiencing my first flare since diagnosis at the end of 2010/2011. This time it again started with severe headaches and a CT scan last week showed inflammation in left sinsus, along with bloods which came back with positive ANCA. However, I'm a bit confused and wonder if anyone has any thoughts?

    Prior to my original diagnosis I had been suffering with IBD (ulcerative proctitis) for a year and had been on various steroid treatments and mesalazine - I then became a member of this wonderful wegs club and eventually ended up on azathioprine which seemed to sort everything. Co-incidentally I had a flare of my IBD a year ago and up until last week still had not got it completely under control, however my gastro dr informed me that there was not a connection between wegs and the bowel? It just seems too much of a co-incidence that history seemed to repeat itself in exactly the same format?

    Do you think my IBD rumbling away could have been an early indicator?

  3. #33
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    Hi Jules

    i was also told my a professor of Gastroenterology that Wegs does not affect the bowel. This was in response to my query when I asked him if it could affect the bowel as I had finally got relief from bowel problems (told it was IBS during suffering for 17 years) when I was diagnosed and started treatment for Wegs.

    At this point I should say it was only when the Wegs affected my lungs, kidney sinuses etc that I was finally diagnosed. I changed my Gastroenterologist the next time I needed the services of one. He listened to my story and as I was to have a colonoscopy he decided to request a special test on the bowel biopsy for vasculitis and it returned mildly positive.......that was 2 years after commencing treatment for Wegs.

    Like you, the reason I asked about the possibility of Wegs affecting my bowel was that I also thought it was too much of a coincidence to finally get major relief from my bowel problems when I started treatment for Wegs in my lungs,kidneys etc. This they could see on.the X-rays and blood work but during those 17 years when I was complaining of terrible bowel discomfort and pain it was only my symptoms they had to go on. I was never diagnosed with IBD and All tests came back negative. I think now it was inflammation of the small blood vessels in my bowel that gave rise to my symptoms. The pain used to move around a lot and I remember when I mentioned this to my doctors they looked at me as if I was losing it. I found out after diagnosis that migrating pain is typical of Wegs

    If you google Wegs and bowel involvement, you will find documented cases of Wegs affecting the bowel. Wegs is rare and bowel involvement is very rare in people diagnosed with Wegs. My Gastroenterologist found cases on the internet on sites only for doctors's use.. There are a few Information sites for the general public where they do mention bowel involvement but they are few and far between.

    It must also be pointed out though that immune-suppressants are also used in the treatment of I B D. They don't know the cause of IBD but it is an inflammatory condition so maybe be there is a connection with Wegs

    Rose

  4. #34
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    Thanks Rose, that is really interesting to hear and sounds very familiar with regard to symptoms being relieved when originally commencing treatment for sinus, lung and kidney involvement! I shall certainly think about seeking an opinion from another gastroenterologist. I hope you are feeling a little better now?

    Best wishes
    Julie

  5. #35
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    Hi @Jules

    Ditto to what @Rose said.

    Wg can affect any organ. Bowel for sure. I have few friends on facebook, at least 5 weggies with bowel involvement. Its rare but it occures.

    I would even ask if your IBD is not actualy WG in the GI system. When symptoms are coming together, like when I have red eyes, joints pains, coughing AND diarrhea, I know that the diarrhea is wg related.

    C-anca positive can be an indication to WG activity but also to Crohns' disease.

    Are you on pred ? Is it helpful for your IBD symptoms ? Btw, My gastro dr. Said that when pred is helpful it might be an indication of IBD and to rule out IBS.

    Sending prayers. Please update us.
    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.

  6. #36
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    Update: The formula worked for me only 3 days. At the fourth and fifth day I got diarrhea and still didnt understand why... at the sixth day I had crazy watery diarrhea all day long. So I understood that it was the formula. Felt like being poissened. The day after I didnt touch the formula. My stomach was quiet.

    So I am back to square one.. no idea how to get the vitamines that I need since I cant eat fruits and veggies and cant bear multi vitamins pills. Any advices are more then welcomed.
    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.

  7. #37
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    Hi Alyssa - thanks for tht info . . . this place comes up trumps every time I have a question. . . It's so good to have you all out there with so much advice on hand!

    I've been put back on 30mg of pred and azathioprine for sinuses and positive ANCA and am assuming the bowel symptoms will automatically improve, as they did last time round. Appointment with rheumatologist next week, so I'm sure more info will follow that!

    How are you doing?

  8. #38
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    I bought the Rifaximine on my own. With hope that it will do what it should. It made things worse. 3 hours after I took the first pill I ran to the toilet. It worked like aggresive laxative. I also had dizziness and shortness of breath. Looked white. So no more.

    Back to my good old friend pred. Nothing like 30mg pred to make you feel as good as new. I guess I should stick with my pred.

    FB_IMG_1486193568188.jpg

    FB_IMG_1486193574879.jpg

    FB_IMG_1486193554266.jpg
    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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