Oh do I ever need to vent!

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
Knitter
Regular Contributor
Posts: 382
Joined: Sat Nov 12, 2005 4:02 pm

Oh do I ever need to vent!

Postby Knitter » Fri Apr 14, 2006 3:35 pm

Read my case update and you will see how much I need to vent. I am soooo very angry that I could spit rusty nails right now.

I just went out and got a lovely french manicure to see if that would calm me down, which thankfully it did! Now I am going to knit and finish the baby outfit I am making for the rector's new grandchild-to-be. I've done the jacket, now I had to finish the bonnet and then I will deliver both.

As for doctors ... grrrrr I don't even want to go into it all again. If you're interested, see my case update and then you may understand my frustration.
Vancocin 250 mg. 4 X daily, Bio-K+, 4 acidophilis pills. IBS, Type II Diabetes, A-typical Menieres. C. Diff. 6X/11 months til May/2006; recurred Sept. 26, 2010.
Take care, stay safe and be happy!
Knitter

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Postby Bobbie » Fri Apr 14, 2006 4:07 pm

Knitter,
Just read you update in Case Histories. Everyone, please post your comments in this forum.

I think your GP is "all wet" and doesn't know beans about recurrent C. diff. Most labs test for the toxins only (not the bacteria) altho. I could be wrong. (See FAQ-Tests for C. diff.) Read all two pages. Allison posted two hyperlinks about the most recent tests.

Above all, get copies of your postive tests. In the US (I don't know about Canada), you have the legal right to have copies of your records and tests. These positive tests are important to prove you did (and probably still do) have C. diff.

Your experiences are similar to many of us who had recurrent C. diff. Many docs. "get" the easy-to-cure variety but fail to grasp the other. It could be termed "the God complex." "How could it be possible I didn't 'cure' you? It must be you."

You said you were happy with this GI previously. Make sure you get your referral and go to him with all your proof.

I'm not a doctor, but I've had C. diff. and I've had IBS (after C. diff.), and there is a big difference.

Nancy1
Administrator
Posts: 1902
Joined: Wed Jan 18, 2006 1:48 am

Postby Nancy1 » Fri Apr 14, 2006 5:19 pm

Knitter,
I'm so glad that you aren't falling for the garbage that your doc is saying. Of course you are not a chronically ill person! And you won't be for the rest of your life! He obviously knows nothing about recurrent cdiff, and doesn't care to either. Nor does he know about you; from your posts here I know about your caring and sense of humor. What a jerk that guy is!

When I was tested for cdiff, they tested for the toxin. How can anyone have the toxin if they don't have the bacterium? My understanding is that it's harder to test for the bacterium, but being positive for the toxin definitely means you have cdiff. I'm not a doctor, of course, but that's the way I get it. So I think your doc has no clue.

At the beginning of my cdiff saga, my primary care doc said my D wasn't bacterial since it hadn't responded to Cipro or levaquin (hohoho). So she put me on the BRAT diet, acidophilus, lomotil, and acetominophen with codiene (the last 2 are things I know now meant that I retained the toxin more and did more damage to my gut). Then she kept trying to convince me that I was getting better. I wasn't, had horrible D, and kept saying so, but she made me feel like a failure and a bad patient because I was still so sick. I felt hopeless and hugely depressed. Docs can really do a number on you. I'm so glad that you are strong enough to resist that! Finally I got the diagnosis of cdiff from a sigmoidoscopy (and the next day tested negative for cdiff, obviously a false negative).

Hang in there. You know your body and that awful doc does not. I surely hope you get your referral and can make some progress. Good luck. It's gotta get better!

Knitter
Regular Contributor
Posts: 382
Joined: Sat Nov 12, 2005 4:02 pm

Postby Knitter » Fri Apr 14, 2006 9:25 pm

At my age, I'd have to be a little slow if I didn't know my body. Why can't that fool understand that? Oh well, he's young.

Please Lauren go ahead and send him some bacterium, that would be soooo much fun, but with my luck he would be resistant to it.

Some people have no idea what it's like to be sick and have no hope given at all of a recovery.

I wonder if poisin would work?
Vancocin 250 mg. 4 X daily, Bio-K+, 4 acidophilis pills. IBS, Type II Diabetes, A-typical Menieres. C. Diff. 6X/11 months til May/2006; recurred Sept. 26, 2010.
Take care, stay safe and be happy!
Knitter

cindym
Long Time Contributor
Posts: 1660
Joined: Fri Aug 16, 2002 8:10 pm

Postby cindym » Fri Apr 14, 2006 11:02 pm

Knitter- Trust me NO ONE knows more than I do the frustration with doctors! I could write a book on that subject but it most likely would be censored! ha!

Any person should surely know you have to have the bacterium to produce the toxin...........geez!

Hang in there and find a doctor that believes you and prescribes meds accordingly and stay with him or her. It has made a terrific change for the
better in my life. Frustration with cdiff and now an undiagnosed problem foot has truly aged me 20 years! I finally have just gotten to the point that I roll with the waves and when I fall off the surfboard I just get back on!.......I wish every doctor that treats one of us like we are stupid CDIFF.
I do have the utmost respect for a doctors dedication to medicine, but when they are stumped they need to admit it and send us elsewhere.Or take the time to educate themselves. It is a horrible feeling to know more about this condition than the doctors do and in talking to them 5 minutes and asking pertinent questions you definitely know if a doctor knows about it or not!

Tomorrow is another day and it could be the one that brings the cure!
Cindy

cindym
Long Time Contributor
Posts: 1660
Joined: Fri Aug 16, 2002 8:10 pm

Postby cindym » Fri Apr 14, 2006 11:05 pm

Knitter- In thinking about it........it is scary to think you could have the toxin without the bacteria.
Cindy


Return to “Got a suggestion or complaint? Want to vent?”



Who is online

Users browsing this forum: No registered users and 35 guests