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Thread: Colitis

  1. #1
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    Default Colitis

    Hello hope everyone is well. Yesterday I saw a new gastro dr who scheduled me for a endoscopy and colonoscopy this Wednesday. Back in 2005 I had a colonoscopy due to nausea, chronic diarrhea, weight loss and general un well feeling. This was with a different provider I was dx'd with colitis and told to drink pepto and sent on my marry way.

    Fast forward to now and I still suffer with the same issues. They increased with added vomiting when I started cellcept. Switched to myfortic and although the vomiting is gone the rest remains. I have lost about 8/9 lbs in the last month and not from dieting. I'm struggling to eat and what I'd I eat seems to go right through me. I was tested for Celiacs which was neg on my first visit with my new rheumy.

    The last few labs I have had drawn have been showing in increase in my eosinophil count. I went to my gp last week for blood and mucus in stool and the weight loss is bothering me. My husband has been trying to force me to eat which as I said has been rough. I've been eating a lot of mashed potatoes and raw fruit veggie smoothies. My gp looked back through my transferred records and my biopsy form 2005 says eosinophilic colitis. Basically to many white blood cells in my gi track which causes inflammation. It's a bit contradictory as it also says cologenous colitis.

    New gastro dr is thinking its eosinophilic as now I'm showing increase in my blood which should be zero to 3.5. Mine is 6.0 not extremely high but high enough to be concerned. Treatment is prednisone. For non lupus patients one course with taper works well. With lupus patients typically symptoms return upon taper. So a course to get it under control then a long term very low dose. Immune suppressants are supposed to help but in my case not yet. She did say cellcept makes gi symptoms worse. There are other drugs but they are not proven to help lupus. They also lower the immune system and she doesn't want to completely wipe me out. She won't do anything until she sees what's going on. I hate the idea of taking prednisone I have already begged my rheumy to not give it to me. I asked about a different immune suppressant maybe MTX or imuran. I also have kidney involvement nephritis I've taken prednisone before and I hated it. That's something that will be discussed after my tests with the her and my rheumy. I see my rheumy on Monday so I will ask about it.

    I feel a bit frustrated as it seems lupus just complicates things. I feel kinda nervous for the procedure as to what they might find. The actual procedure I'm sure will be fine. I've never had a endoscopy before. The prep is the worst part I'm sure. Anybody suffer with colitis issues?

    How is long term low dose prednisone? I'm scared of the side effects. I want to feel better yes but steroids gosh I just really don't like the idea.

  2. #2
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    I have not suffered from Colitis, but I know that we have several members here who have and I do hope that they respond to you.
    I am sorry to hear that you are dealing with so much and have not really had any relief for quite a while. I understand your trepidation about Prednisone, especially if you did not tolerate it well before. Your are correct, there are other immunosuppressants that can be considered and I do hope that one of them works for you.
    I wish you the very best and hope that you get some answers and relief soon.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    tomcatsgirl (05-21-2013)

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    You might want to consult with a dietician, and talk with them about your disease(s), the medications you take, and what your current diet is. Be sure your rheumy and pcp (and any other doc involved in your wellness) are kept up-to-date with the discussion. It might be that you could add or elminate something from the diet that can help or slowdown the colitis enough to get things closer to "balancing".
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    tomcatsgirl (05-25-2013)

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    Tic Toc..and a holiday weekend. Trying to busy myself. My procedures went fine the prep really is the worst part. Dr took a lot of biopsys from top to bottom she said. Just waiting on results and feels as if time is standing still. I asked when I should hear from her she said maybe Friday which wasn't the case. I'm so impatient!

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