WhitePine's Case History

[whitepine]

I have been sick for 2+ years with c.difficile. I got it after taking large doses multiple antibiotics for 4 years for neurological Lyme disease. I also struggled with the stomach bacteria h.pylori for what seemed like forever, still not sure if that is gone.

In January 2005, had came down with c.diff, but the Emergency Room I went to misdiagnosed me with a stomach virus. My diarrhea, cramping, fever and pain continued for 3 weeks until I could get in to see a GI who tested my stool for toxins A & B c.difficile. At first toxin B was positive, later both toxins A & B.

I was treated with Flagyl 500 mg 2x per day for 2 weeks. My fever and diarrhea stopped after 3 days, and I was feeling improved until I stopped the Flagyl, and all my symptoms returned. I took Flagyl for 2 more weeks, and again was not cured. My GI said it was now IBS, and I was left to suffer for months. The pain and cramping, plus fever increased in April 2005 to the point of going back to a different hospital and being admitted for c.difficile. I was treated with Vancomycin for 2 weeks, then 6 weeks more.

Along with c.difficile, I was found to have microscopic colitis on colonoscopy. I was discharged with a Rx for Asacol and Pamine, and told it would take 6 months to heal. During the rest of 2005, my pain, cramping, nausea and diarrhea were constant. Another GI ran a test for Crohn's disease thru Prometheus labs, and it came back positive for inflammatory bowel disease. The Asacol, which was for the microscopic colitis, did not seem to do much, but the GI said it would take a long time to work. I tried Questran and Immodium which helped a little. I tried hycosiamine, pamine, xanax, endocort, and robinul for the cramping pain. Nothing took away the pain, and all made me drugged and drowsy. Xanax helped ease the cramping some. I tried pentasa and asacol for crohns and microscopic colits, but neither brought relief.

I was found to have severe reflux disease from a PH study with a tube down my nose into my esophagus. I had 300 episodes of reflux in 24 hours, which is severe. Apparently, PPI's cause more c.difficile so I have been advised not to take them. I also have rapid transit on the barium small bowel series.

In February 2006, I relapsed again with c.difficile, and at that point realized IT HAD NEVER GONE AWAY. I was given Vancomycin for many months to gradually taper. I then had a colonoscopy in June and was told it was perfect, and to stop all vancomycin, even though the pain and cramping was still there.

By mid-November 2006, I fully relapsed again, positive toxins A & B, and back on Vancomycin, 500 mg 4x per day again. The pain, cramping and diarrhea, and now bleeding would not quit, and by December I was hospitalized for 2 weeks for the c.diff. I was given Vancomycin 500 mg 4x per day, Flagyl in IV, and Bacitracin liquid all for the c.diff. Stayed on all 3 meds until January 31st 2007 when I got in to see a c.diff specialist, and had a stool transplant/fecal infusion via colonoscopy with stool donated by my mother. Although the diarrhea did decrease, the pain continued. The other GI from the hospital ran another Prometheus blood test 7-series, and again, it was positive for Crohn's disease even though my capsule endoscopy and colonoscopy looked perfect. I got a negative c.diff test in March, and have been off all meds since Jan 31st. The cramping pain continues, and diarrhea appears at random. Post -infusion I have been experiencing days of zero bowel movements, followed by bowel movements 3x the next day with cramping pain. I have a chronic anal fissure that is also very painful as a result of all the GI problems in the past 2 years. Nausea is constant. The GI who did my infusion said I may not have crohn's it may all be c.diff, and to only use Immodium now that I got a negative test. I tried elavil and librax for pain, and it elavil caused massive nausea and drowsiness, even at low doses. Librax made me a drugged out zombie, although it did help the pain a bit.

At this point, I am looking for a GI who will supervise me doing fecal infusions at home. I have talked to many other c.diff patients who got cured after doing 5-10 infusions, in contrast to the ONE I had. I feel I need more than one, and I wish to do stool infusions at home. I have nothing to lose, and I'm desperate to get well. Just got diarrhea again 3/29/07 and I will re-test AGAIN.Still not sure about the Crohn's, but I have taken Pentasa and Asacol before with no luck.

Wish me luck!

[whitepine]

Updating this...

5/26/07

I thought I was doing ok, and just had Pi-IBS, I started a pattern of having one bowel movement per day, and in some cases skipping a day, and doing ok. I have been off all meds since my 1 infusion in January. I have had 2 negative c.diff tests since then which gives me hope.

This past week i have had the gurgling and cramping pain return. I got diarrhea with mucus and a lot of pain. I am worried that the c.diff is back again, retesting right now.

Severe reflux right now, and for days...trying a PPI again to see if that helps.
Praying the c.diff is gone..and this is just PI-IBS, either way, its horrible.
Trying to stay positive...but constant pain doesn't make that easy.
Praying for a miracle...to one day have a normal GI system again.

[whitepine]

8/22/07 -Update


I did 5 fecal infusions and got rid of my c.difficile! I have been c.diff free since early June. Feel MUCH better, no more diarrhea. Whew! To anyone suffering with c.diff, the home infusions are really simple once you get a system down, and I will be happy to help any of you explain how I did mine, based on my own experiences. You should have a doctor supervising you, and give you the OK. I had a colonoscopy 4 weeks afterwards and it looked "perfect!"

I also did a lactulose breath test for SIBO (Small Intestinal Bacterial Overgrowth) and it came out strongly positive. I am going on Xifaxan for that shortly.

I also had an endoscopy and I have an open pylorus (the opening valve between the small intestine and stomach) which is allowing bile reflux to burn my esophagus. I have gastritis too. I couldn't figure out why the Prevacid and other PPI's were not working for me. The reason was because the bile mixes with the acid in the stomach and is very caustic. I am now on double dose 60 mg Prevacid plus carafate. I may do Actigall (bear bile) and see if that lessens the caustic effects of the bile.

I am slowly healing now and in much better spirits and am hopeful for the future. Don't just accept a diagnosis of IBS or PI-IBS after a bout of c.difficile, it could me SIBO, as in my case. Always work to get to the bottom of your personal situation. Fight like heck and don't give up!

Probiotics are essential, and fecal infusions can save lives.
Thanks all!