MOVED FROM PM'S (WITH AUTHORIZATION) - Yvette211

Please limit your post to questions only. You can ask multiple questions in the post. (One post per person per day about yourself. See exception in General C. diff.Discussion.)
Bobbie
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MOVED FROM PM'S (WITH AUTHORIZATION) - Yvette211

Postby Bobbie » Tue Mar 13, 2007 12:32 am

From: yvette211
To: Bobbie
Posted: Sun Mar 11, 2007 10:29 pm
Subject: PPI's + c-diff
Dear Bobbi,
I have recently been diagnosed with c-diff. I also have been on aciphex for the last three months for GERD. During that time I had a positive stool but was in nursing school so decided to wait to have the endoscopy and colonoscopy scheduled for after I graduate. Right after graduating I had a tooth pulled and was on clindamycin.after three days I started to have odd symptoms but not diarrhea so I went for the colonoscopy. After the bowel prep I went into full blown diarrhea for almost a week and went to the ER where they did a stool.... c-diff pos. The colonoscopy showed only mild areas of colitis, nothing major at all according to the GI. After being on flagyl for 10 days I did not have diarrhea, but formed soft stools instead and still tested positive. Now I am on my last day of vanco and my stools still look funny and am almost sure that it will still show positive for c-diff. I have stopped taking my PPI because of reports that it may be related somehow to getting c-diff, my GI though said he never heard of such a thing. But I still am hesitant. I have two qeustions..Are these reports of PPI's legitimate? The next is if other people have had such a hard time getting rid of this even after taking flagy and vanco one after the other, or should I worry about that new resistant strain? I try to talk to my GI but they just roll their eyes and tell me that the colonoscopy report was nothing to worry about and mine is a mild case that may just be hard to get rid of. I have to beg to even get an appt. with them. They tell me to retest and then they'll call me with the results. Where as when my regular GP sends me for anything, he always tells me to come back to see him. I'm just so frustrated and feel so isolated and ignored, I look things up but who can I go to just talk and get some answers and options. Are there any recommended GI docs in CT that are educated on c-diff that you know of?
Thanks for listening Yvette211

Bobbie
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Postby Bobbie » Tue Mar 13, 2007 1:00 am

Yvette, I wante to answer this on site because your questions and feelings are typical of many C. diff. patients. This way, you can get the benefit of everyone's knowledge. Rmember, however, this is not a medical site, but we can tell you what worked for us.

First of all, read the first forum on the site ALL USERS READ THIS FIRST and the subtopics. Dr. Borody's & Dr. McDonald's articles are great sources of info. on C. diff. info. Be sure & read them. Read the topics in FAQ that pertain to you, especially hygiene (very important), tests, nutrition, etc.

Clindaymycin was the first antibiotic implicated in C. diff. (See FAQ-Antibiotics.) Yes, there appears to be some correlation between PPI's & C. diff. To my knowledge, Dr. Dial's study was the first one done (see Media Reports), but I don't know if there are any backup studies. Many docs. are leary of PPI's for this reason. Other acid reducing meds. are also suspect -- but not as much.

That said, I have acid reflux/hiatal hernia & have been on a PPI for 4 yrs. I've had C. diff. twice (the lst time in l993 for 4 yrs . -- extenuating circumstances so don't panic & the 2nd time in l999, & both times was not on a PPI. I had pneumonia (4th or 5th time) in November & had to take a Zpak. I did not develop C. diff. -- knock wood. Because of my past history, I am at high risk of getting it again. I've tried not using the PPI but am miserable w/o it & my GI said I probably will be on it for the rest of my life.

If you don't have a hiatal hernia (usually determined by an endoscope), you might be able to do without the PPI. See FAQ-Acid Reflux.

I am unclear about whether you were first diagnosed with C. diff. while only on a PPI. Were you on an antibiotic at the same time? It appears from your post that you took Clindamycin after you'd alread been diagnosed with C. diff. You will probably need to be careful about antibiotics in the future -- at least for awhile. Sometimes, they are absolutely necessary but often are not or a less broad spectrum one can be used.

If your C. diff. persists, do see another GI. I check our Doctors section but don't see one in CT. Ask your PCP for a referral, or better yet, ask someone in your nursing school (nurses know which docs. are good and which "ain't.) Or call a teaching hospital & ask them to refer you to a GI who is knowledgable about recurrent C. diff. If your PCP doesn't listen to you, find another one. Do follow up with a GI (either your current or a different one ) or an ID if your C. diff. persists. 80% of people recover with one to two rounds of meds.

Testing (stool tests, colonscopies, & flex sigs) should be done when you are off meds. for 10 to 14 days (l4 best) -- if possible -- as meds. (Flagyl or Vanco.) can affect the results. It appears many docs. do not know this. See FAQ-Tests.

C. diff. is a very lonely & little known disease. Please educate your fellow nursing students about it. Keep us posted.

yvette211
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Posts: 3
Joined: Sat Feb 17, 2007 8:40 pm

c-diff + ppi's

Postby yvette211 » Tue Mar 13, 2007 7:19 pm

Hi Bobbi, thanks for responding. I have had a various amount of problems with both my upper & lower GI tract for the past few years. I was told that all the issues I was having with my lower was probably from IBS by my GP. The indigestion was tolerated at first with Maalox Max. I seemed to get "episodes" or "flare ups" of indigestion. It then over the past year turned in to more frequent episodes and a burning in my throat and a nauseated feeling. I ended up in the ER one day, I thought I was having a heart attach or something. That's when they did the occult stool test and advised me to see a GI doc. I went but put off all the scoping until after school. That was in November, I've been taking Aciphex ever since. In January I took a round of amoxicillin for an infection in my tooth. Two weeks after I finished that, I had it pulled and the Dentist put me on Clindamycin on Jan. 20th. I started to get pain in my LLQ anf left rectum. I went to my GYN thinking it may be endometriosis or scar tissue from having my oopherectomy. I also bumped up my colonoscopy to R/O GI problems because I started to pass small amounts of mucous sometimes with small amounts of blood, but no diarrhea. It was after my bowel prep on Feb. 12th I started with it. After my scope I still had severe D along with N/V and a slight fever. Went back to the ER twice before the scope results were back. The second time is when they cultured for c-diff. The scope only showed a few mild areas of acute superficial colitis and a small area of mild chronic proctitis. Other than a few very mild areas of irritation, the GI said my colon looked good. They had to put off my endoscopy for a later date ( Aril 10th) becouse I did not fall into the "twilight" sleep he had hoped to achieve (he gave me more the max amount of meds)!! Anyhow, I think I got the c-diff from the antibiotics, but I was also a CNA for 11 years and have dealt a recent outbreak of c-diff on one of my wings at work. I am very carefull about handwashing but maybe I goofed up somewhere along the way. I was also on a high dose of antibiotics last year for a sinus and double ear infection. After a few days on them I had diarrhea and noticed that "distinct" odor . I stopped the meds and was fine, only had the D twice with no further problems. I didn't have any cultures done at that time, but now it just makes me think whether or not I've had it since then. I didn't get diarrhea but I do get "episodes" of soft stools but usually only around that ime of the month, actually that is when both my upper and lower GI symptoms seem to act up the most...go figure right! Anyhow, I've taken up enough space I think. By the way I did get a chance to read the articles posted from the doc's on the site...very interesting. This whole site has been very helpful to me. I will keep you updated on whether or not this last round of vanco worked or not..Thanks again

Bobbie
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Postby Bobbie » Tue Mar 13, 2007 8:48 pm

Yvette211,
Yep, probably a combo. of everything - previous use of antibiotics, possibly the PPI, & being around C. diff. where you work.

Let's hope this round of Vanco. works. The endo. will show if you have a hiatal hernia. Some don't need medication with one (they are fairly common), but I'm evidently one of the unlucky ones who does. (I'm on Aciphex & also take Mylanta Supreme during the night because of discomfort - it contains no aluminum). Some recent studies indicate PPI's can inhibit also aborption of calcium, & I already have osteoporosis. Always something, isn't there? I exercise faithfully & recomend it for almost everything if you can manage it. It helps both mentally & physically.

For tips on acid reflux, see FAQ-Acid Reflux. I've raised the head of my bed & it helps somewhat. I've modified my diet somewhat -- but not as much as I should.

Glad the site has been helpful. You aren't alone. Good luck in nursing school & please educate your fellow students about C. diff. Your background as an CNA should be helpful. Keep us posted.

yvette211
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Joined: Sat Feb 17, 2007 8:40 pm

Postby yvette211 » Wed Mar 14, 2007 4:36 pm

Hi Bobbie, it seems as though you've been through alot also. It is good that you take such care of yourself and keep up with your conditions as you do. My aunt has a hiatal hernia and she too needs to take nexium and something else for breakthrough heartburn. The GI told me to take two Acifex if needed when the heartburn is really unbearable, but I really try not to. Sometimes all I could bear to eat is saltines. Water will even will give me reflux. It is aweful and it burns so bad, they think I may have an ulcer. I quess I'll find out in April. I put it off for too long and took Motrin for the tooth pain when I knew I shouldn't have. I did a stool sample on Mon. and found out it was negative today, but after reading some posts I am weary on whether or not I did it too soon. I made an appointment with the GI for Fri, and will ask if I can do another in a week or so. I still am pretty gassy and am having two or three soft stools a day. I am just in a hurry to get back to work! This past month has drained me financially. It amazes me because the docs don't make you wait to retest, even at work they retest the patient's right after therapy and then after two negative stools they take them off of precautions whether they still have symptoms or not! I did tell a few of my fellow students about my experience but I have been finished with school since Jan. 19th and have not kept in touch with evryone. I recieved my autorization to test for the NCLEX today also, so hopefully soon I will obtain my license. I definately learned alot through my experience with this illness and can really sympathize and understand the hell my patient's with c-diff go through. I will let you go now and sorry if this message seems rushed, I tought I would respond before I head out...always busy! I wish you all the luck and commend you for staying healthy and keeping up with your health. You've dealt with so much and still give to other's to help them. It rally takes a special person to think of others and help them even when you yourself are dealing with alot. Well I hope to hear from you soon and I've keep you posted.

Sheila1
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Postby Sheila1 » Thu Mar 15, 2007 4:58 am

Hi Yvette,

I had very similar symptoms to yours in the fall of 2005 and was diagnosed with IBS and given Prevacid and whatever else for indigestion, gas, reflux, etc. It all went away on it's own after 4 months and I no longer needed any medicines. Didn't know it was cdiff until I was given prophylactic antibiotic for surgery (which I didn't know I'd been given) 6 months later, then I became seriously ill and was back in the ER with pseudo. colitis. Of course, after I got full-blown cdiff I knew exactly what I'd been dealing with the previous fall from the 'distinct' odor and a few other signs.

This experience has caused me to believe - and I'm not a doctor - that it's highly possible many may have mild cdiff that are misdiagnosed with IBS and put on PPI's thus causing studies to implicate PPI's because many cdiff victims were on PPI's prior to getting sick. What came first, the chicken or the egg? There are a few articles where some doctors believe it's possible that 'many' (however many 'many' is) diagnosed with IBS may in fact be low grade cdiff. Who knows? On the flip-side, the theory in the PPI implication is that the PPI's inhibit stomach acid which is necessary in killing many bad bacteria prior to reaching the intestines - which also makes tremendous sense.

CDiff could have been acquired anywhere, but your recent experience in dealing with an outbreak is highly suspect. No matter how much you wash your hands, if others aren't doing the same and you touch something they've touched, such as pick up an ink pen off the desk to log something that another employee used who's hands weren't thoroughly cleaned - and there you have it. Or if you washed your hands properly then used them to turn the handle off on the water, open the door, etc. it could have been picked up that way. Bed rails, telephones and nurse calls are the most common items hospital diseases are found upon - and the most common for a CNA to touch!

Your experience can be used to educate others in the medical field (when you're feeling up to it!). I read on a nursing forum an RN posted that had severe cdiff and said up to that point she and all her co-workers thought cdiff was "just diarrhea" and boy did she learn different. That's exactly what we all need the medical field to understand! It's MORE than just diarrhea. The symptoms are much further reaching than most in the medical field realize; both physically and emotionally.

On finding a good doctor.....I had luck doing this: call around various offices asking to speak with the doctor's nurse (front desk people don't usually know these answers), then ask the nurses if any of the doctors are extremely familiar with the recurrent, relapsing form of CDiff. I told them it would be a huge waste of both my time and the doctor's if they didn't have experience with it so I was requesting this information prior to asking my GP for a referral; they all were very honest in their answers. I called various GI docs and found an Infectious Disease center and hit the jackpot with the ID doctor. Knowledgeable doctors are out there, it just isn't common knowledge (none of my other doctors were even aware of this ID doctor).

Best wishes for a fast and complete recovery!
~Sheila

paulah
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Postby paulah » Thu Mar 15, 2007 8:05 pm

I got full blown cdiff after drinking the bowel prep for a surgery,
no other symptoms before that, although I was very undernourished
because of a liver problem. Been reading this forum for 3 1/2 yrs since, you are the only other person during that time that has posted that the bowel prep really started their cdiff.

yvette211
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Joined: Sat Feb 17, 2007 8:40 pm

Postby yvette211 » Fri Mar 16, 2007 6:05 pm

Thank you both Sheila 1 and Paulah,
It seems as though alot of people on this site were initially diagnosed with IBS. I wonder how many people actually go misdiagnosed due to having these atypical symptoms. I'm betting on alot! I went to the GI today. I think that if I continue to have these symptoms or start to have new symptoms, I'm looking for someone else for sure. Maybe an ID doc or something. I was trying to ask my GI if these ongoing symptoms were IBS or perhaps I retested too early. First he told me I talked too much!! Then he said that it didn't matter when I retest, if it comes back negative than it's negative!!! Then he said that it may or may not relapse but if the stool is neg for now than that acute colitis they seen on the scope is probably gone...I won't even mention that I learned that the report showed diffuse areas all over the lg. intestines today in contrast to what I was told when I first was notified about the report!! I quess that is what I get for going to a GI practice with four different docs in it. Next time I will request only one Dr. for all appt's, procedures and whatever else I need! Sorry, I just had to vent. I wish I would just get blessed with one Dr. who actually took the time to listen for a change...(LOL)! It helps alot to hear from other people that can relate though. Thank you both for the support and I wish you both a speedy recovery.

Yvette211

Bobbie
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Postby Bobbie » Tue Mar 20, 2007 12:58 am

yvette,
Your experiences are common. Hope by now you've found a GI who acutally listens to you. Others on the site have good luck with ID's.

Sheila is right. Talk with nurses in doc.'s offices & ask them (they know the "good" & the "bad" docs.) & ask them if doc. is familiar with recurrent C. diff. You might also call a teaching hospital.

You are right. Many are originally diagnosed with IBS & then oh, gee, later, it turns out to be C. diff. The bacterium is difficult to culture out -- one reason for its name: C. diffile (difficile is Latin for difficult).

Remember, you aren't alone in your struggle with docs. Be persistant, polite, and professional -- especially persistant.


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