I will practice what I have learned going forward. Fingers crossed.
My lupus is pretty mild, which I attribute to a super healthy diet and low dose naltrexone. It's not because it started out mild mannered. My first flare lasted over a year and a half and was very difficult to get under control. I have had some flare ups in symptoms since my major flare in 2007, but most of my issues have been peripheral complications that I probably wouldn't have if it weren't for lupus. The most common issues involve my digestive tract. More specifically, I have a really hard time keeping the bacteria in my gut at a healthy balance.
April is when the first serious warning signs started to show up, but I explained them away. Periodically, I would have bright red blood in my stool. Because it was bright red, I wasn't overly concerned. If the stools are black or very dark, then I worry. That was the first really bad assumption. Then I started getting uncomfortable cramps in the descending colon area - but I've always had a tendency towards diarrhea and intestinal spasms, so I didn't think much of it. I even ignored the more frequent bowel movements reasoning that doctors just stuck me with the IBS label in the past without doing any bacterial/parasite testing, so why not just assume it's more of the same?
I made it until the third week of June before I got hit with a fever over 102F and started presenting with symptoms of appendicitis. My belly was extremely tender, especially in the right lower quadrant, even to the point of making my breath catch when I stood on my toes and then dropped hard on my heels. My neutrophils were through the roof, which is a strong indicator of bacterial infection. My doctor had me rush to North West Hospital and get a CT-Scan. They left the IV in operating on the assumption that I was probably going to get carted off to surgery, but the CT-scan was completely negative. My doctor had me do a bunch of stool tests and then start on a couple different antibiotics - ciprofloxacin just in case it was early appendicitis and flagyl just in case it was c. difficile.
The relief from the antibiotics lasted almost a month before the bleeding and severe cramping started again. The cramping was in a different area this time, so appendicitis was not suspected. Stool tests for bacteria were repeated and I was positive for c. difficile and put on vancomycin. Vancomycin is only used if Flagyl is not effective and is considered "the big guns" for c. difficile. I was concerned after four days with no improvement, and highly panicked after 8 days with no noticeable improvement. I still had severe cramping, frequent stools, and a low grade fever. Instead of extending the antibiotics, the gastroenterologist decided to do an endoscopy/colonoscopy. Fortunately, the doctor found no evidence of inflammation. Unfortunately, the cause of my illness was not addressed and the symptoms were back within a week and a half of the end of a 10 day course of vancomycin. I should have kicked up a fuss and demanded more antibiotics, but I assumed people knew what they were doing.
After the symptoms came back, I was retested for c. difficile. The test was negative, but my fever continued to climb and the intestinal cramping became unbearable. I was put on vancomycin again for 10 days. This time there was improvement within three days and it's been almost a month without bleeding or cramping up. I realize the bar is low if I'm excited about a lack of blood.
My gastroenterologist told me that it's pretty common for her to see patients with autoimmune who have palpable inflammation and digestive issues without showing positive results in any of the standard tests for irritable bowel disease. While biopsies didn't show signs of inflammation, there were actually inflammation masses around my small intestines. A camera endoscopy didn't show any abnormalities despite the swelling. My rheumatologist warned me to be cautious of doctors who blame lupus when they can't figure out what is causing the problem. While it is pretty common to have a low grade fever with lupus, it's not common to have a steady fever for six months, especially if there aren't other signs of disease activity. My blood work is "ideal" other than an elevated ANA level. The sedimentation rate, C reactive proteins, standard blood counts, and other measures were within the optimal ranges. My rheumatologist found it suspicious that I have positively responded to antibiotics and suggested that I test for SIBO (small intestinal bacterial overgrowth). I'm also retesting this week and doing a full stool panel to check for many different kinds of bacteria and parasites.
Symptoms have slowly been creeping up on me again. I am a special kind of tired right now - the kind of tired that makes you feel like your brain crawled in front of a fire, curled up under a blanket, and went into hibernation. It's not an uncomfortable feeling, but it can be frustrating, especially when you are expected to perform complicated tasks. "Complicated" is a relative term. For me it normally means advanced SQL queries and intelligent user interface design, but on days like today it means remembering not to submerge the meat thermometer in sudsy water while doing dishes. And failing. Whoops. There are some people with lupus who get insulted by The Spoon Theory, but I have to wonder if they are the folks who don't have fatigue (there isn't just one flavor of lupus). That being said, my friends and I have found it a helpful analogy.
I'm not sure what my test results will reveal, but if there is evidence of c. difficile again, I may switch to a gastroenterologist who is open to a fecal transplant. It's a fairly new procedure, but the results doctors have been having with the procedure are extremely encouraging. It's one of the only things that works with antibiotic resistant c. difficile. My husband, brother, and a coworker have already volunteered to go on my restrictive diet and test to see whether they are eligible to donate. C. difficile is a serious infection that can be life threatening. I am learning that it is extremely important to get it treated properly, and am finding my spine. I would rather seem pushy to a doctor than have complications from a ruptured colon. I am a bit discouraged - in addition to the antibiotics, I have been taking 10 billion unit probiotics, saccharomyces boulardii, oregano oil, and anything else I can find without much change.
Because I have had c. difficile in the past along with other food borne issues, I have been reevaluating how I handle my food. I had already been washing all of my produce, but have discovered that my stomach acid is too low and is no help in digesting meat or killing food borne bacteria. I have been supplementing with Thorne Betaine HCL and Pepsin (which I would never, ever recommend without testing first), and it seems to at least help with digesting meat. I have also been considering storing my toothbrush in the kitchen instead of the bathroom. Even though we close the toilet seat when we flush and wash the brush heads with food grade hydrogen peroxide, I suspect it isn't enough. We also moved the hand towels away from the toilet in the bathroom.
- Use of bleach wipes in the kitchen
- Use of bleach cleaner in the bathrrom
- Use of gloves when cleaning the bathroom
- Use of gloves when handling raw meat
- Washing hands to the tune of ABC's while vigorously scrubbing. Twice.
- Conscientious hand washing after handling laundry
- Wiping down door handles with bleach wipes
On the up side, I've figured out a good method for getting through colonscopy preparation. I suppose that's good for another blog post at least. I had a few good weeks of productive fiction writing and artwork, but I've hit a bit of a stall as things decline.
Many doctors and researchers theorize that autoimmune starts in the gut. It matches with my medical history, but does it ring true to you?