Tuesday, November 16, 2010

Help! I'm sick!

Day 229

I guess now is as good a time as any to share...I have not been feeling well. I never actually feel very well, but this little "flare-up" has been especially bad. I am not sharing this to complain, or even for sympathy. I am only sharing this because I hope that someone out there can give me some answers! So let me describe my symptoms:

Gas (internal gas...unlike the out word expression my husband shares frequently)
And the most gnawing, burning, icky, churning, stabbing feeling on the right side of my abdomen. Only on the right side and often the pain shoots through to my back.
Joint pain
Sharp pain/headache behind my eyes

The flare-ups usually show up out of the blue (meaning that there isn't necessarily a stress or food trigger, although I'm not dismissing those factors) and they last from 1-5 days. The pain can be downright debilitating, or manageable enough to go through my daily life uncomfortably. This has been going on for years, but the time between flare-ups is diminishing to only a few days between. They are like attacks because the pain usually does come on without any warning. One second I feel fine and the next I'm doubled over in the most gross, nauseating pain. During the attacks all I can eat is saltines, hard candy, and water. Which hasn't been so much of a problem in the past because there was enough time between to restore my nutrients. But now that the attacks are getting so close together I don't have enough time to physically recover. I thought for a while that only rich foods, or large amounts of food have been making sick, but it doesn't seem to matter if I eat pizza or carrot sticks- a lower fat diet doesn't seem to prevent an attack. I have just recently had a CT scan and ultrasound of my abdomen and they didn't see any signs of gallbladder disease or appendicitis. I had laproscopic surgery to rule out endometriosis. I was checked for celiac disease 6 years ago and they said I had it, so I lived on a gluten free diet for 2 years with no change in symptoms. I was recently rechecked and told I didn't have celiac disease. Dr was possibly thinking ulcer, but I tested negative for the h.pylori- now they think it is a duodenal ulcer. To manage the symptoms I take Zofran, Tylenol, Pepcid complete, and Imodium.

Here's the thing- I have a life to live here. I am a genuinely happy person but I can't keep my positive attitude for much longer when I feel like this. I can't feel like this and work, and take care of my two children. And don't even get me started on the activities and hobbies I'm missing out on right now because I just physically can't. I used to travel, I love to travel, but can't because I never know when I'll have an attack. I haven't seen my family in Iowa for almost 2 years, and my grandma in Ohio for almost 5 because of this. I used to love to camp and hike- and now I wouldn't even think about it. I had to take leave from the Colorado Springs Chorale because of this. I think my body has finally run out of storage and just can't give anymore without better nutrition- but how do I get better nutrition if my body wants to reject everything. I can hardly stand up without feeling like I'm going to pass out! Help! If you know anything about this, or have experienced it, or had a sister, or cousin, or know a guy whose mother's boyfriend's accountant went through something like this, please share! And if you know of any good gastrointerologists...truly good ones that will actually treat me like a human being- please let me know. I've got a life I'd like to get back to. And self soothing with pain meds is not an option.



  1. OH MY GOODNESS!! I am having some of the same problems (not quite the same symptoms, but I have been going to a GI for the past couple of months and have had several tests done trying to find the cause of my "issues" without a solid conclusion), so I feel for you, because it is impossible to continue any semblance of life this way.
    Feel free to ignore my thoughts, but here are a few things I've researched just trying to find answers and rule out others.
    IBS (not a helpful answer though, because I believe that is a "catch-all" for anything they can't diagnose)
    Gall Bladder (and just because they didn't see anything on a scan or US doesn't mean that it is functioning correctly. I had a Hida scan done that determines how well or poorly the GB is functioning. Now my problem is that they discovered that mine isn't functioning at an optimal level so they think they've discovered the problem and want to remove it. I have my doubts that my GB is the root of all the trouble, based on several different doctors comments on the "abnormal symptoms".)
    The next few are things I know virtually nothing about, but just throwing them out there:
    Crohn's disease
    ulcerative colitis

    Anyway, sorry if none of that is helpful, but I've been at my wit's end trying to find answers myself, so I can understand your frustration. If you do find an answer would you mind sharing (because perhaps it could help me out, too). I've considered going the gluten-free route just to see if it makes a difference, but it takes such dedication and it is more than likely that celiac disease isn't even my problem.

    Sorry about my super long comment, but this just hits home for me, not sure what all you've been checked for but I thought I would just throw out what has been sorted through in my own head.
    Hope you find an answer soon!

  2. Oh, forgot to add, I was told it could be lactose intolerance (I actually laughed, because I've always eaten so much dairy I can't imagine that all of a sudden my body has decided to reject it, but what do I know?)

    I keep hearing about trying pro-biotics on a regular basis and I think I'm going to try it out. It can't hurt, right?