June 18, 2002 – I’m healthy.
I am a 55-year-old female living in Idaho. I am fit, active, and practice practically every healthy habit known to man – I eat right (all organic, lotsa fruit and veggies, avoid wheat, dairy, sugar, alcohol, caffeine) I walk, do yoga, have fun, laugh, floss my teeth, you name it. I do not, however, sing "Happy Birthday" as I wash my hands. That will change.
Though I am not sick, I am going to have surgery tomorrow because I have a condition called "pelvic prolapse," including a cystocele, rectocele, and prolapsed uterus. (The medical terms for the fact that my insides are sagging.)
To prepare for my surgery, I take a phospho-soda laxative (Fleet). I’m on my way to having a super clean bowel, a little too clean as it turns out.
[Note: Previous to this, in April, I had a urinary tract infection for which I took a course of the antibiotic Cipro. I followed that with a week or so of acidophilus capsules.]
June 19 – Surgery day, with lots of antibiotics…
I am given these antibiotics before or during surgery: Cefotaxime Sodium and Neomycin. Then I am started on a course of Cephalexin 500 MG 1 X/day.
June 20-25 – Recovery from surgery
My recovery from surgery is going great. I’m in the hospital two more days and then home. As soon as I start eating, I am told to take Colace, a stool softener, once a day. My bowels are so clean!
June 25 – More antibiotics…
I visit my urologist at one week post surgery and have the supra-pubic catheter removed. She has me increase the dosage of Cephlexin to 4 X/day.
June 26 - I get sick.
I have four BM’s in the night – loose even for taking Colace. By 10 AM I am running a fever of 103.5 but with no other symptoms. Both my gynecologist and urologist take a look at me and put me in the hospital again to see if they can figure out what’s wrong. I have a CT scan (normal), blood tests, and stool test. In the evening I develop horrible diarrhea. Between 8 PM and 2 AM I have to go about every 10 or 15 minutes, and it’s almost uncontrollable, watery, neon green and stinks! Thank goodness, the nurse set me up with a commode right next to the bed, and I’m on IV fluids so I don’t have to put anything through my digestive tract. This is the drill: I leap from the bed to the commode (not so easy when you have abdominal incisions), do my thing, then drag my IV stand over to the sink and wash my hands, lay back down for five minutes, and then do it all over again.
By this time, even though the results of the stool test are not back, the nurses figure I must have C. Diff. They put a scary warning sign on my door, the door stays closed, and everyone who enters wears neon green paper gowns (seems appropriate) and blue rubber gloves.
June 28 – Diagnosed with C. Diff
Miraculously, around 2 AM I am able to fall asleep, and the diarrhea is never this bad again, although it doesn’t go away either.
My docs start me on Metronidazole (Flagyl) around noon, and by 4 PM the report is back on the stool test confirming that I have CDIF. My husband takes me home from the hospital about 9 PM, and we immediately try to set up our one bathroom with paper towels, anti-bacterial soap, special trash bag for me, Clorox for the toilet bowl, Clorox wipes to use on all fixtures, rubber gloves, etc.
[Note: Now that I’ve read on the Clostridium Difficile Support Group web site what others have gone through, I am grateful that a) I was diagnosed quickly; b) that I had the hospital support system while the diarrhea was so severe; and c) that, because of the surgery, I had already arranged to not have to go back to work until August.]
June 29-July 7 – Is there life while taking Flagyl?
Taking Flagyl makes me feel icky. Nothing sounds good to eat, but if I don’t eat, I feel worse. Interestingly, when I do eat, the food tastes OK. The only foods that sound good are foods that I have some nostalgia about, like white bread or mac and cheese. Because life is so gray, and because I figure everything goes right through me anyway, I eat pretty much anything I can make myself eat, and also have a piece of chocolate cake at Grandpa’s birthday party. Bad idea – the day after the chocolate cake I can tell I am getting a vaginal yeast infection. The diarrhea lessens slightly each day.
I pretty much never get depressed, but I’m thinking I’m depressed now. I have to force myself to do some activities, like putting pictures from a recent trip in an album, and that does help. I think a lot about people who live with unrelieved suffering, like all the people in Africa with AIDS. I think about how it’s probably a good idea to feel grateful for every experience that comes to us in life. For me, if there’s anything to be grateful about in having C. Diff, it would be in developing compassion for those who suffer.
July 8 – Life after Flagyl
The first day after I finish the Flagyl, my joie de vivre returns. I discover the Clostridium Difficile Support Group web site, which reminds me that eating right is more important now than ever. I get a fresh bottle of probiotics from my health food store and take one capsule 3X/day. I also learn to sing the "Happy Birthday" song to make sure I’m washing my hands long enough. I go back to my normal healthy eating habits, but make no allowance for continuing digestive upset, and eat things like lotsa fresh cherries and watermelon, red meat, seeds and nuts. I guess I'm either a slow learner, or in denial, or both.
July 9 – Post op visit
I go to my gynecologist for three-week post op visit. Everything from the surgery is doing fine. She suggests that I try to fight the yeast infection naturally, with probiotics and and avoiding sweets. She also tells me to go to Petco (yeah, the pet store) and buy something for fish tanks called "Instant Ocean." I can put ½ cup in a bathtub of water and soak in it to restore normal Ph. I’m very excited about taking a bath.
July 12 – Hoping I’m well…
I have been having 1-4 pretty loose stools each day. I have an itching rash from something (the 100 degree heat?), and I’m still fighting a vaginal yeast infection. However, things get slightly better each day. My fingers are crossed that C. Diff is gone for good.
July 15-16 -- In denial...
My husband and I decide that a trip in our RV to the Oregon Coast is just what we need right now. I am very busy getting ready for the trip, I'm eating pretty much whatever I want, and the diarrhea gradually increases. I'm in denial (!) and tell myself that I'm just having a little Irritable Bowel Syndrome because I'm stressing about trip preparations, and that I will be better as soon as we're on the road. Late on the 16th I decide to put a thermometer in the RV, pop it in my mouth first, and discover that I'm running a fever. OK, so I'm getting sick again. We put trip plans on hold.
July 17 -- CDIF Round #2
I call my gynecologist, and send a stool sample to the hospital lab (which comes back 24 hours later positive for C. Diff). She assumes it is C. Diff again and prescribes another round of Flagyl. She offers to refer me to a gastroenterologist either now, or if I should relapse a third time. We decide I will just start the Flagyl again, and in the meantime she will consult with a gastroenterologist to see if we should be doing anything different.
I also call my naturopathic doctor, which I should have done the first time I got C. Diff. She gives me the eating instructions I should followed before. She says I need "gentle fiber", and not much else, until the diarrhea is gone. I eat nothing all day this day, and I stay on the "BRAT diet" (Bananas, Rice, Applesauce, Toast) for three days following. She also has me eat a vegetable soup made by boiling veggies like carrots, onion, summer squash for hours and then running it through a blender. When the diarrhea is pretty well gone, I gradually add other mild foods such as fresh cooked vegetables (avoiding the cabbage family), chicken breast, mild white fish, some fruits. She also gives me a powder of Slippery Elm, Marshmallow, and Licorice which I mix with a little hot water and drink as a tea. (NOTE: This powder was actually a mistake on her part - it made the diarrhea worse!) And she gives me a homeopathic remedy, Podophyllum, to take three times a day until the diarrhea is gone. I am to continue taking my probiotics, two hours after taking the antibiotic, and three times/day for at least a month after I'm through taking the antibiotic.
The diarrhea lasts until evening and is almost as bad as the first time, only now I'm not in the hospital. At one point, I have to move a chair into the bathroom so I can be that close to the toilet. It's awful. However, by bedtime it's under control.
July 18 -- We take C. Diff on the road!
With some trepidation, we get in the motor home and head for Oregon. I'm actually OK - stools are loose, but infrequent, and not urgent. I do run back and use the potty a couple of times while we're rolling but it just seems funny, and I'm determined to have this vacation - I deserve it!
July 22 -- Vancomycin
Because of some cell phone chaos, a message from my doctor is delayed from Friday to Monday. I finally am able to talk to the doctor's office and the message is something like this: "When a person with C. Diff fails a first course of Flagyl, the Centers for Disease Control recommend Vancomycin for a second bout." So now I have to get a prescription for Vancomycin filled. I am so grateful to have been forewarned by the Clostridium Difficile Support Group web site that this drug is very expensive. I call my insurance company and verify how to make sure they will cover the cost since I am in another state. I find out I have to go to a big-name pharmacy, like Rite-Aid or WalMart, so we have to backtrack an hour back up the coast to a city with one of those pharmacies. I end up in a Rite-Aid in Coos Bay, Oregon where the pharmacist tells me a) it's just a lucky chance that she has any in stock - often this drug is only available in hospitals, and b) the prescription will cost $400 for 40 pills (!) but my insurance will pay all but $25. Whew!
July 28 -- Day 6 on Vancomycin
I'm still watching what I eat very carefully, but the diarrhea has been totally gone for several days, I have no side effects from the Vancomycin, and we are home from a great vacation. Once again, I'm hoping that C. Diff is gone for good.
August 1 - August 4 - A short reprieve
After six days of Flagyl and 10 days of Vanco I stop medication on August 1 and I am normal and healthy for four days, though still eating carefully.
August 5-6 -- Third episode of C. Diff
I have nine episodes of diarrhea on 8/5, and fever rises to 102.8. My gynecologist had said she would refer me to a gastroenterologist if I relapsed again, but, of course, it is impossible to get a new patient appointment anytime soon. So, without a stool test she just starts me on another 10 days of Flagyl. I get an appointment with the G.E. doctor in 10 days.
I adopt my "C. Diff Theme Song," courtesy of Christal Gayle
"I'll get over you.
I'll get through, and when I do,
I'll be good as new
When I get over you."
The next day only six episodes of diarrhea, but I feel just awful! I switch my theme song temporarily to "Get The World Off My Shoulder," which I bellow out in the most obnoxious country/western accent I can muster, and that helps a little. I'm back on bananas, rice, applesauce and toast.
August 7-15 -- There is (some) life on Flagyl
Most days I have just 2-4 loose, non-urgent stools, so I can continue my life. I stay on the BRAT diet for four days, hoping stools will firm up, but they don't so I give up and start eating other foods, but still follow no dairy, sugar, wheat, etc. One day I worked too hard at something stressful and had eight episodes of diarrhea. The next day I just hung out, watched movies and such, and went back to just two loose stools. In general, I fatigue easily and just feel kind of icky.
August 15 - I visit a gastroenterologist.
Dr. U. took my history, and then said "You haven't flown very far on your own..." so didn't think it would do any good to try to go without Flagyl or Vanco right now. He prescribed a tapering dose of Vanco over next 60 days, starting with two a day for two weeks, then tapering down to one every other day, or every two days, at the end. He suggested I take Lactobacillus GG, and Saccharomyces boulardii if I could find it. (I went home and ordered both Culturelle and Florastor from http://trustmark.org/cdiff.php) He said not to take any anti-inflammatories or anti-diarrheals (they reduce blood flow into the colon.) Tylenol is OK.
Other comments he made were:
- "Flagyl is slightly better than Vanco at killing the bug, but has too many side effects." (No kidding!)
- "When you are told to take something 4X/day, you don't have to wake up in the night to take it every six hours."
- "Whatever you eat is not going to affect the course of the C. Diff, unless you are recovering from a bout of diarrhea, in which case, you need to give the bowel a rest." (So I guess going on my BRAT diet until the diarrhea slowed down was a good idea....)
- "It wouldn't mean anything to get a stool culture now. The C. Diff will be there, and may be there the rest of your life."
I asked him what I should do if I am told to take antibiotics in future. He said 1) tell them you have had C. Diff so they can choose an antibiotic least likely to cause C. Diff. 2) Take Saccharomyces boulardii before any treatment with an antibiotic.
October 15, 2002 to present -- A happy ending
On October 15 I take my last Vanco and go on with my life. As of this last writing (July 2004), I have never had another episode of C. Diff.
January 2003 -- A bladder infection
Three months after finishing the Vanco, I developed a bladder infection (proteus mirabilis) for which I refused treatment with antibiotics. I found that I could keep the infection at bay and remain symptom free as long as I religiously drank two liters + of water a day. It took a year (!) but by January 2004 the infection was gone.
I also started taking Primal Defense (homeostatic soil organisms from Garden of Life.) I have no proof that this helps anything, but it sounds like it could be a way to build natural immunities. Read about this at http://www.gardenoflifeusa.com/pi_hsos.shtml
Questions? Contact me at [email protected]
