Anna J

[Anna J]

In March 2012, I fell and got road rash on my knee that got infected. I had not had any antibiotics for almost a year (a UTI) and before that had refused antibiotics for 15 years because it always caused flares and rapid progression of my autoimmune disease when my immune system came back online. I was diagnosed with Ankylosing Spondylitis and put on the immunosuppressant Enbrel as well as prednisone to manage the inflammatory nature of that beast. I also suffer severe Gerd and took omeprazole for more than two years.
On October 1, 2012 I had a sudden severe episode of explosive D out of the blue. The next day, my left side felt on fire and I became weak, dizzy and my heart was pounding. I called my doctors’ office and was told to go to Urgent Care as they had no openings. I had no fever, no belly distension and the EKG showed my heart was fine. The UC doc said it must be a flu that made my AS flare up. I saw my rheumatologist the next day and she had the same impression the UC doc had. She entered it as sciatica and gave me some muscle relaxers to take with the pain meds I was already on.
By the next week, I was still having D and called my primary care doc (PCP). She ordered blood and stool tests. I came back positive for cdiff toxin by PCR. They called me at work and told me to leave work, go to the pharmacy and start Flagyl 500mg 3xday immediately. I notified my rheumatologist who instructed me to stop the Enbrel injections until cleared by my PCP. I had also stopped taking the omeprazole recently because my insurance stopped covering it and out of pocket was too expensive.
The D didn’t let up until I was 6 days into the Flagyl, and on the 8th day, had another explosive bout. After that I was okay for a few days, and by the 14th day after starting Flagyl, I felt bloated and constipated. I showed her the probiotics I was taking (Pearls IC) and she said one a day was fine. She ordered another stool test and it came back positive, so I don’t know if it ever got killed in the first place or if it relapsed. Dr. ordered Flagyl again, but after two days switched it to Vanco as the D came back with a vengeance. She also referred me to a GI doctor and that appointment is on Thursday. In the meantime, I am taking Vanco 4xday at 125mg, sips of BioK+ (about ¼ of the 3.5 oz bottle), sips of Bubbies Sauerkraut juice, a light sprinkle of Florastor on applesause, and one of the Pearls probiotic. My stools have some form, and my left side is better than yesterday when I couldn’t even sit in an upright position for more than a couple of minutes, but is still tender. I tried to take a little more Floraster today and got really bad gas and had to take a gas relief pill. Back to sprinkles.

[Anna J]

Well, I thought I would post an update. I have been off the Vanco for 3 days now. The IG doc had me wait until I was two days away from finishing the Vanco to start Florastor. I have been doing well so far. No gas from the florastor like I had when I first tried to take it. One day I had one D bout on Thursday and a couple of days I had multiple BMs, but feels and looks normal just a bit soft and mucousy. I have my fingers crossed. I still use the Bubbies (on a ham sandwich, which is delicious), avoid coffee, and take a Pearls IC in the evening. So far so good. I am hoping to be one of the 80%! I did start having some burning and frequency when I urinate yesterday, so am drinking cranberry juice. It seems a little better today.

[Anna J]

I went for a check with the GI PA the Tuesday before thanksgiving. Ordered stool tests and scheduled a CT Scan for Friday dependent on the stool results. If negative, do the CT scan, if positive, cancel CT scan because “all it could show was inflammation”. I had a horrible Thanksgiving, and Friday after thought I had an obstruction. I couldn’t even pass gas and there was loud rumbling on the right side but nothing on the left. I put a heating pad on my tummy and it must have expanded the gas or something because I got sudden sharp pain and couldn’t take a breath without moderate pain for several minutes. Then I got some gas to pass and it eased up, then had little bms over the next couple hours and the pain subsided. The stool wasn’t hard at all, very soft, so I figure something had to have had it blocked temporarily, but it cleared.
I tested positive again yesterday (Thursday) and am back on Vanco, this time with taper after two weeks. They also want regular “phone updates”. The pain came back full force so stayed home from work today (Friday). I don’t have diarrhea, and BMs are very soft but not fluid. However, but my left side and back hurt, I feel so fatigued, I can hardly move. Now I am scared. My c-diff is not antibiotic related and Peggy’s website said that could mean fulminant c-diff, and it came on sudden and severe like the website described AND went 11 days untreated. I was on Immunosuppresant Enbrel and that wasn’t stopped until the second week. I am still on low dose Prednisone, which I’ve been on for over a year, but have been weaning myself off and am now down to 2.5mg got it down to low dose (with the nopal cactus I have mentioned). My white blood count not elevated, so that eases the fear some (I asked the PA if the Enbrel or Prednisone would affect my WBC and was told no. I was reading on c-diff in immunosuppressed people and it said that s. boulardii “was not completely safe in immunocompromised patients” because of risk of fungemia,so am not on that but have it to use later. My last round of Vanco, I was told until 2 days short of ending before I started it.
December 7, 2012
This just gets weirder and weirder. Yesterday, after thinking for a few days that things were improving well, I had a sudden, sharp pain in my left side. It passed after 20 seconds or so, so I thought not much of it. On the way home from work, the pain hit again, but sharper, like a stab, not a paid I have felt before. I thought from the feel of it that something had torn. I almost pulled over to the side of the highway, it was so surprising. Nothing more happened so I waited until this morning to call the GI clinic for an “update”. They told me if I got a fever, vomited or the pain got worse to go to an emergency room.
Guess the Christmas party this weekend is out of the question.