Rare does not mean it doesnt happen

[alliejp]

I am completely fed up with everyone. ER docs, my PCP, pharamists, and as much as I hate to say it, I am getting fed up with my husband.

I do not care how rare it is to be allergic to Flagyl
I do not care how rare it is to get c.diff from clindomycin
I do not care how rare it is to not get "cured" with the first round of Vanco.
I do not care what your little medical books and pamphlets say.

Seriously, I dont.

Its pretty rare to get mauled by a shark, but when it happens, you dont tell the person they were bit by a jellyfish.

You can tell me how rare something is until you are blue in the face. It does not change the fact that the above things have or are happening to me at the present time. (well, except the shark thing) Stop telling me I dont know my own body. Stop telling me something is in my head, when I know it is not. Stop telling me I'm not sick.

Three days after stopping the Vanco, I am relapsing. I know I am. No one wants to believe me. The ER doc wont give me more Vanco b/c "it must be something else, the Vanco would have cured me". Same with my PCP. I know what is happening to my body, I am in no way in idiot. The GI is doing everything he can for me, he is trying to open an appointment for me, and has some back up ideas. Why is he the only person who believes me? Why is everyone else acting like I am just some moron who happens to be going to the bathroom 10-14 times a day?

I swear, i dont want to hear the word rare again.....

[Marry]

alliejp,

I tried to PM this message to you, but it didn't go, so I am posting it here.

I hear you loud and clear. It could have been me making that post. I heard that so many times too. I finally got rid of C-Diff after having the stool transplant in Duluth, MN. It took quite a while to get to that point though. In the middle of my bouts with the beast I emailed Dr. L Clifford McDonald with the CDC. (His contact info is in the FAQ section under CDC Contact info. I copied the form and filled in my info.) He replied with some information and noted what other doctors had tried, he didn't prescribe any treatment or suggest any as I am not a patient of his. I took his reply to my GI who then changed my treatment. Dr. McDonald also sent the information about the transplant procedure in Duluth. It took that to finally have the doctors listen and believe me.

Good luck!

Mary

[Bobbie]

alliejp,
We hear you "loud and clear." Many of us who relapsed (the unlucky 20%) had the same experience.

Docs. say it is "rare" to get C. diff. after a round of Clindamycin but it is one of the biggest offenders. (See FAQ-Antibiotics.) I got C. diff. from Vantin -- another cephlasporin. I had it for 4 yrs. (I knew about the disease because my son had it twice years earlier.) I went to Mayo after having it over 10 mo. (Bad experience -- doofus doc. said I had IBS, but I was on Vanco. -- and he knew it-- so all the tests were negative). When I got home, I went off Vanco. per instructions and was ill again. The doc. at Mayo did recommend Dr. Allen who lives in KC where I live. (See Doctors - Dr. Allen.)This time I had a positive culture, & he did "the broth" which failed. (Had only 3 positive tests in 4 yrs. altho. I was orig. diagnosed with pseudo. mem. colitis by colonscopy). I developed several other infections & let other docs. talk me out of having the broth again -- to my regret. Next, I went to the U. of Mich. Med. Center later to apply for a blind study for S. boulardii (now Florastor) and was on it for 2 yrs. on compassionate usage, but it didn't "cure" me. Then, I was on Culturelle for another year. Several GI's in KC (before I saw Dr. Allen) told me I couldn't still have it &/or they didn't want to treat me.

Finally, at the end of 4 yrs. (& at the end of my sanity), I had "the broth" again (See Doctors -- Dr Allen, KC). This time it worked. Two yrs. later, I had pneumonia again, & Levaquin caused another bout of C. diff. altho. the attending doc. in the hospital told me it wouldn't. (Ha!) This time the broth worked the first time.

My husband wasn't supportive, & my friends and co-workers didn't know what in the H. ... C. diff. was, & I didn't elaborate.

Sick of C. diff. & those who don't understand you know your own body? You bethcha! Everyone who has the same experience understands what you are going through.

Hang in there. Something will work. In the meantime, try to get into the GI earlier. Call every morning. Sometimes they will work you in just to "shut you up." At least he believed you. Dr. Allen was the only one who believed me, and he saved my life -- twice.

C. diff. is a pain in the a.. , literally and figuratively, esp. for those of us who relapse.

[alliejp]

As much as I wouldnt wish this on my worst enemy, I am partially relieved that others know how I feel.

How in the world for you go through this for years? I am already about to pull my hair out and scream from the rooftops.

I have noticed a few posts about wanting to raise awareness of C.diff, has anyone tried to get their story (or several of the stories here) in Readers Digest? I got my monthly copy in the mail today, and I realized that they always have a story about stuff like this. Unknown illnesses and misdiagnoses. It is pretty respected and has a wide reader base. Just an idea.

How come "the broth" treatment is always last? And hard to get? I have been reading about it, and it seem like the best way to go. Or am I missing something?

I dont think the numbers for c.diff and causes and stuff are right. It really doesnt seem as rare as they say it is. Maybe it just seems that way to me right now since I am in the middle of it so to speak.

[Christina]

I sent Readers Digest the story that I wrote along w/ my Dr.'s help which is posted in success stories.I've also sent it to Newsweek in response to my old PCP's article on c-diff back in the Dec. issue. As always, I have not heard back.I have also sent it to the newspapers who ran my stories back in Dec/Jan of last year as a follow up. They have said no because they've already done 1 or 2 stories on c-diff and that is enough. For some reason people just aren't interested.
I think unless more people start dying (unfortunately) nothing will be said or it will take someone really big to get this in order to give it the publicity it deserves.

[cindym]

AllieP- At least the word "rare" is used in your case instead of "freak" as I have been called not only by GI but also infectious disease doc! I understand how you feel..........I still experience all the yuck but after all this time I tell them what I think when they say it!

[Nancy1]

alliejp,
I think that many docs are not comfortable with "the broth" or a fecal infusion (both treatments of last resort, basically). My doc surely was not. In order to be treated with "the broth" or an infusion, I believe that you need to have tested positive 3 times. In my 8 months of cdiff, I only tested positive once, so I was never a candidate for either. Both, especially the infusion, have very good success rates.

[prairierose]

Alliejp,
All I can say is "I know how you feel...totally".
Everything about my case was termed "rare", "unusual", "not likely", "strange" etc, etc.
You can read the nasty details in "Erin's Case history", but in a nutshell I got Cdiff from being on a combo of Flagyl and Nu Cephlex for a MISDIAGNOSED womanly problem.
I was violently ill but repeatedly told that I just couldn't have CDiff as it ws "unlikely" and I was young and healthy...(Not anymore Ha ha!)
Then it was unusual and odd that Flagyl didn't work and that I became sicker. Then it was even STRANGER that I developed a severe fungal infection in my esophagus due to all the Flagyl...I remember the GI doc saying "but you are so young and otherwise healthy?!" Really doc? Cause I'm lying here on your table at 20 lbs ligther than I was last week and you are telling me that FUNGUS is growing in my esophagus and I am going to the washroom 30 times a day! Very healthy!
Anyways, then about two months later my worst fear came true; as I was on Vanco, my daughter began having bloody diarrhea. All the docs said it wasn't possible she had C diff and it just doesn't happen. Yeah, sure. My daughter tested positive for Cdiff 3 times and was put on several rounds of Flagyl.
Needless to say I have a hard time believing anyone anymore about CDiff. I have spent over a year fighting and being told the same types of things you were.
Trust your gut instincts. You are not crazy. Hang in there. Things do get better. You will get through this!
ps: I laughed pretty hard about the whole shark thing. SO TRUE!
All the best,
Prairierose

[Bobbie]

alliejp,
When I had "the broth, " (1993, l997, l999), it wasn't standard med. procedure (still isn't) & was "frowned on" by other docs. To my knowledge, Dr. Allen in KC is still the only GI who does it. He will advise other GI's how to do it, however. Its success rate is not as high as the other infusion methods, but I believe he he has modified the treatment somewhat which might increase its efficiency.

Two other posters on this site came to KC for it, & it failed although I believe it helped one until she took another antibiotic. He stressed to me (& I wish I hadn't listened him & not other docs. I was seeing for other problems) that it sometimes takes more than one time. But then so do some of the infusions.

Up side: since it's done throu endoscopy (which is standard medical procedure), sometimes your insurance will cover part of the cost. Also, you don't need a donor.

Contact info. for Dr. Allen is in Doctors. I don't know if he now requires 3 positive tests. Call his office for or more info. & talk to his nurse Cheryl.

We can't recommend any treatment on this site but merely state what worked for us. It didn't work for me the first time but did the 2nd & 3rd.

[Woman51960]

It is not "rare" that we have all experienced the same things you discussed here. WE HAVE...I use to feel like the doctors thought I was crazy and imaging it all. I now know I am and was not crazy, because we all have felt the same way at one point or another. I had the broth in KS done back in May 2005. That doctor tole me it takes awhile to work as well. After about six weeks I went back to my local GI who did a colonoscopy and said I still had "positive cdiff". My GI doctor put me on another antibiotic for hydraentitis suppurtiva for 1 week. After that I kept relapsing, and have been ill and on vanco up unti Nov 25, 06.

Right now I am contemplating my next course of action. I am going to try Dr. Barlett at John Hopkins or try to get into one of the clinical studies for the IVIG. I'll keep you posted.

For your sanity, even though they tell you it is "rare" what you are feeling is common for most of us cdiff sufferers. I think the doctors who treat us that way is because they don't have the answer themselves and don't want us to know that they do not know either.

[Dorothy]

AllieJP,
I am another one of those "rare" people, just wanted to send a word of support. It can make you feel as though you are going crazy. I don't think that Doctors (most of them) like to admit that they don't know what to do. It is easier to blame thew patient and say, this is so "rare" than to say " I don't know the latest info on this infection, let me read up on it." Slowly I think it's changing, but it is so hard to go through.

I had c-diff in 2003 and I didn't think I'd survive, but here I am 3 1/2 years c-diff free and doing fine. This will pass! Hang in there.

[mayotte]

I am new to this site. I just came from my GI, after my 3rd round of vanco. He says my symptoms are now anxiety as Vanco cures the c.diff. I didn't know nausea, fatigue, and weakness were symptoms of anxiety.
I have been sick since Feb, only diagnosed with c.diff in late April, and already have learned not to trust my doctor. I guess it is time for me to find someone who will listen!!

[Bobbie]

mayotte,
Do find another doc. if you are unhappy with your present one. Many docs. know little about C. diff. Best to see someone who is familiar with the disease -- usually a GI or a ID.