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C. Diff. - Monkey Me (Darlene)

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Posted 9/22/2007 8:58 PM (GMT 0)
Hi Darlene (and Hello to Everyone),

I decided to do a new post to answer your question about c. diff., which you have had since 03/07 (under post topic Unexplained Chronic Fevers).

I had an appendicitis/appendix removal July 1st/03. Eight weeks later, I was hospitalized for ten days for an abdominal abscess; I was put on two IV abx to treat the abscess. After getting out of the hospital, I was still sick, and I became sicker and sicker with chronic diarrhea, fevers, weakness, etc. I wasn't able to keep any food or liquids in my body, so I saw my doctor on Oct 5th. He was smart enough to order the test for c. diff. STAT. By Oct 12th, I was so sick that I could barely walk from the bathroom and back to bed. I even felt faint when sitting on the toilet. My husband took me to Emergency, and I was admitted. I found out that the infection had become so severe that I was very dehydrated, and I was going in shock.

In order to get rid of the infection, I was put on two different IV abx; One was metronidazole (Flagyl), and I believe that other one was Clindamycin, which I believe you said you have been on. I was also given IV fluids, often fast-drip. I was in hospital for nearly one week. From the time my appendix was removed to contracting c. diff., I lost 25-30 lbs. Even though all the infections were gone, I didn't recover fully until early the next year. And I thought having your appendix removed was a simple thing!! But these things aren't so simple for we folks with chronic illness.

I'm sorry that you have had this infection since 03/07; I wasn't aware that one could have c. diff. for so long chronically. The hospital doctors said that I got c. diff. from the previous abx, while my family doctor said that I contacted it from the hospital. I believe that latter to be true. I wondered if I had got it from hospital tub. Sounds stupid, maybe, but I had to get into a hot bath ASAP (IV pole and all) because I was having a bladder spasm. This was on the 2nd hospitalization w/ the abscess. Normally I would have cleaned the bath tub prior, but I was too sick. I guess it could have been picked up from any surface, though.

How did you get c. diff.? I feel badly for you that you haven't been able to get rid of it. Is it possible that you could be treated with IV abx??? I know this is gross, but when I was infected, my stool was extremely strange. All different colors such as green, yellow, and also small green leaves (looked like), mucous, white things, as well as white pellets. They wouldn't discharge me until I could keep in a small meal of soft food, and the diarrhea had slowed down to approx 4x/day.

Have you seen a GI specialist due to your c. diff.?
Posted 9/25/2007 8:26 PM (GMT 0)

Carrie,
Thank you so much for taking the time to respond to my post. I am sorry I didn't see it sooner as I have not been able to be on the pc too much.

Boy you are right, simple routine procedures just aren't so routine with our bodies are they?

You mentioned that you were on two IV antibiotics. Those would have been Flagyl and Vancomycin. Clindamycin is a front line offender when it comes to causing C. Diff.

I wanted to explain a little bit about how c. diff works. C. Diff is a bacterium that lives in spore form outside of the body. This enables it to protect itself, because while in spore form, not much can kill the nasty thing. Hospitals and nursing homes are notorious for having c. diff, or clostridium difficile bacteria ALL over every surface. Light switches, door knobs, chair rails, elevator buttons etc.

If you have a healthy bacterial colony in your colon, then you can ingest (accidentally of course) c. diff and not be harmed. Your normal healthy bacterial flora stay intact and do not allow the c. diff to colonize your gut.

However, if you take an antibiotic, especially a broad spectrum one like they gave you for your abscesses, these antibiotics wipe out ALL bacteria in your gut, except for c. diff, which has become a super bug and immune to antibiotics.

There are only a few antibiotics that it is not immune to. Flagyl is one, vancomycin is another.

about 75% of people that acquire c. diff are cured with one or two rounds of flagyl or vancomyicn.  THe other 25% go on to have reoccurring, relapsing c. diff. Every time we try to go off of the antibiotics, we relapse and get very sick all over again.

It has been a long arduous process, and I am still having complications. I just took stool samples in this morning to see if I am once again relapsing.

So both the hospital and the treating physician were correct. You probably did pick up the bug in the hospital, and it was able to colonize because you had antibiotics.

The only way that one can have the spores introduced to their body is oral. It has to be ingested. So wash wash wash wash wash those hands! Hand sanitizer does nothing against c. diff so that will not help you. Sure wish I had known that when I was in the hospital!

I know all about the strange stools, those of us who have had c. diff can tell some pretty scary stories hehe.

You asked if I could be treated with IV antibiotics. They have found that unless a patient cannot keep anything down (which I can) then there is not a need for IV antibiotics. Flagyl gets into the colon fine, and vancomycin taken orally only gets into the GI tract and not the rest of the body, which is a good thing, because those of us who have had to take or who are taking vancomycin are at greater risk for developing what is called a VRE. A Vancomycin Resistant Enterococcus. A very serious hard to treat infection.

Isnt being sick just a load of fun lol?

Thank you again for your reply Carrie, I am so happy that you are no longer dealing with C. Diff.

Did they tell you to ALWAYS be very careful in the future about taking antibiotics? They should also have told you to vigilantly take probiotics, yogurt of kefir will work just fine.

Thank you!
Darlene

Posted 9/25/2007 9:08 PM (GMT 0)

Hi Darlene,

Wow, that's very interesting info about c. diff. that I never knew!!  I think it's worse for you to have reocurring, relapsing c. diff. versus having it more severely like I did (unable to keep anything down), since the treatment cleared it up for me.  That's awful to be affected by it chronically, especially since you have other serious health problems as well.  I think it's good, though, that you are so very well informed.

No, no one EVER told me about being careful in the future about taking antibiotics, so I'm very glad you have.  I was on abx last year quite a few times (Zithromax, and Mephron), and I didn't have any problems, but I did make sure to have yogurt daily.

I noticed it your signature "UCTD, probable lupus" as well.  To make a long story short, my family doctor suspects I have SLE, and I went for a ton of blood work on Friday.  If you don't mind, may I ask you how you were diagnosed??? I was dx'd w/ FMS in 2001, but my health declined further in late 2005, with worsening chronic low-grade fevers and worsening profound fatigue and muscle weakness.  I saw an ID specialist re the fevers, and eventually it was decided that I have an autoimmune disease, which my family doctor suspects is systemic lupus.  The only things we don't share in common are chronic fatigue syndrome and RLS.

If you're up to it, perhaps you can share your story with me.

Posted 9/25/2007 9:17 PM (GMT 0)
Darlene,

I'm a bit of a ding-dong sometimes. Clarification: I was referring to the things in your signature that we share in common. Also, I know there's a big difference between "possible lupus" and "probable lupus."
Posted 9/26/2007 9:28 PM (GMT 0)
Hi Carrie,
I don't mind sharing my story at all. My health problems began in 1990 after having a c-section in giving birth to my daughter. When she was 6 months old, I caught what felt like the flu. Coughing, fever aches headache etc. But I never fully recovered, and in the months that followed, became so fatigued, exhausted and weak it was all I could do to crawl to the bathroom. Many tests were ran, the only thing that came back out of the norm was a high white cell count, no cause could be found.

The entire episode lasted about 6 months, but since then I have never been the same.

In 1993 I once again contracted the flu. This time I had a lingering fever for 3 months afterwards. No cause could be found.

In 2001 I once again contracted what felt like the flu. Afterwards I had fevers and body aches. The fevers subsided but the body aches did not. I was diagnosed that year with fibromyalgia. They also diagnosed me with meniere's syndrome because of the vertigo spells I would have.

In 2004 I became very weak, at first only during menstruation. But then it all kind of ran together and I was so weak, dizzy and sick that I could not even go to the bathroom by myself. The ran test after test. MRI's muscle eeg's etc. Nothing was found to be out of the ordinary I was terrified. I thought they were missing something. I was so weak that swalloing was difficult. I couldn't reach for a glass of water, it was horrible. It was made worse by the fact that I was continually told it was anxiety. I knew it wasn't, but there was nothing I could do to prove myself!

Then in 2006 I developed a fever of unknown origin. The fever went on for 2 months I believe. All tests were coming back normal except for a low white cell count. I was terrified. They told me that I had a blockage in my appendix, but that it wasnt causing the problem. They were going to do laproscopic surgery and take it out anyway, just incase. They did, but when they went in, they found my entire mesenteric lymph system was swollen greatly. Thre was some bleeding at the back of my abdomen, so they opened me ALL the way up and explored. No cause was found for the bleeding, except that perhaps in its swollen state one of the lymph nodes had broken a blood vessel.

On a follow up with my family doctor a few months after surgery, he did an ANA panel, even though they had checked it before. It came back slightly high and with a speckled pattern. He sent me to a rheumy as my family has a history of autoimmune disease, my sister having discoid lupus and my father having ankylosing spondilitis which is a type of arthritis. She took my history and followed me for a bit, and then I developed mouth sores, and a facial rash. Those coupled with my ANA, my joint pain, my history of fever, my fatigue and the swollen mesenteric lymph nodes, she diagnosed me with Undifferentiated Connective Tissue Disease ...but told me that Lupus was a high probability and started me on Plaquenil.

I have been unable to take the Plaq because of the already messed up GI tract, and she cannot give me Pred or methotrexate right now, as my immune system really needs to conquer this infection.

So that is where I am at!

Hope that helps and if I can answer any more questions, please let me know. I probably left so much out. When you write it down like that, it doesnt seem all so bad, but living it for the past several years has been horrible lol.

Darlene

I was discharged a week later still having temps. The temps lasted another couple of months, but eventually stopped. I was marginally ok until I took the clindamycin for a dental infection in march. Thats when the c. diff became a part of my life ugh.
Posted 9/30/2007 6:03 AM (GMT 0)

Hi Darlene,

Thank you so much for sharing your story.  I would have replied sooner, but I was sick in bed with a minor cold and major nausea.  You certainly have had a really rough time for a number of years.  My story is similar in that I have never been the same since 2000; I contracted the flu four times that year, which was very unusual for me.  The low-grade fevers lingered throughout 2001 onwards until late 2005 when they became chronic high-end low-grade fevers (up to 100.9 - 101 F).  My functionality since late 2005 has also decreased significantly due to extreme fatigue and weakness, etc.

2004 was definitely a very rough year for you.  That's so ridiculous when doctors say it's anxiety.  When the infectious disease specialist mentioned that I have had Depression, I said, "Yes, but depression doesn't cause fevers."  I can relate somewhat to the weakness you described.  I have too many days that I can't brush my teeth properly, wash my face, lift a plate from the cupboard, wipe the counters, etc.  It is, as you have said, horrible.  I call the weakness and fatigue "grotesque." You were right at that time that they were missing something.  I think you would agree that we have a gut instinct that tells us when something is wrong.

I was also dx'd w/ fever of unknown origin in early 2006 by a locum at my family doctor's office.  He ran a ton of blood work to no avail.  Then, I saw the infectious disease specialist who confirmed that what I have is "chronic high-end low-grade fevers."  My family doctor said the distinction doesn't really matter at this point, since a fever is a fever.  It is my family doctor who suspects I have lupus; he ordered a bunch of blood work which I went for last Friday.  I'm a bit anxious about it.  Last year, I tested positive for the anti-smooth muscle antibody and the smooth muscle titer.

That sounds so awful about what happened when they went to do the laproscopic appendectomy.  From what I understand, you were in hospital for one week, then marginally OK (I like that term, "marginally OK"...) until your dental infection.  I also had a very bad dental infection (something about a bone infection and systemic) after a four canal root canal in 2000. The year 2000 was a nightmare for me, and 2001 was no picnic either because I had to stop working in February.  I spent most of that year in bed reading novels; I read more than 40 novels that year!  Of course at that time, I had no doubts that I would get better, but that's not the way things have turned out.  You know about my 2003 hospitalizations, and how my health has deteriorated much more since late 2005.

Darlene, I know you didn't ask me about my story, but I wanted to share with you due to some similarities.  What also struck me about your story is that the doctor(s) said that lupus is a high probability in your case.  Of course I'm new to lupus and I'm not a doctor, but it seems that all of your signs, symptoms plus your positive ANA would much more than meet the 4 out of 11 criteria.  Again, I'm really not sure how it all works.  Perhaps you'd enlighten me when you get a chance?

Thank you again so much for sharing, Darlene.  I really hope that the C. Diff. will clear up for you, and then that you will be able to take prednisone and Plaquenil so that you get some overall improvement (hopefully your GI tract will tolerate too).  And, is it true that these meds actually help prevent your lupus from progressing?  Take good care!

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