Regular readers of this blog and followers on social media know that I was diagnosed with an intestinal infection due to clostridium difficile (commonly known as “c. diff“) about four months ago. In my last post, I shared the treatment up to that point and that the next step would be to undergo a fecal microbiotia transplant (FMT) and promised to write an update after that experience. It gives me great pleasure now to do that and to announce that I have now tested NEGATIVE for c diff and am definitely on the path to recovery.
First, let’s review…
What is clostridium difficile and how does it cause problems?
Clostridium difficile is a bacterium found in the intestines. It is believed that healthy people can and often do have the bacteria in their guts, but that it is kept in check by a balance of other bacteria. When the balance is disrupted, usually by taking broad spectrum antibiotics, c. diff can overgrow and release toxins that attack the lining of the intestines, causing a condition called clostridium difficile colitis that is part of an inflammatory reaction, with a “pseudomembrane” formed by a viscous collection of inflammatory cells, fibron, and necrotic cells. The yellow gunk in this image is the pseudomembrane my doctor saw in my colon when my infection was active (yes, that is a picture of my actual colon!).
Side note, my doctor was actually somewhat surprised that my colon didn’t look much more inflamed when he did this colonoscopy. For that I credit my healthy real food “paleo”-inspired diet. Throughout all of this my Crohn’s disease did not flare up and while I did have often severe diarrhea, moderate anemia, and lost weight I couldn’t afford to lose, I was spared the fevers, fatigue, and severe abdominal pain that many with c. diff infections struggle with. For the most part, I was able to continue on with my life as normal – though after dealing with it for more than four months I was starting to get pretty weak and definitely ready to try a new treatment strategy.
Drug resistant clostridium difficile
As I wrote in my last post on the topic, after I was diagnosed in July my doctor prescribed first a 14-day course of vancomycin which seemed to help somewhat but then my symptoms came back shortly after stopping it. This happens in about 20% of patients – likely because the bacteria is spore forming and can lie dormant – so I wasn’t too concerned that I needed a second course. Unfortunately, this time I never had any relief and my doctor switched me to another antibiotic fidaxomicin. At this point my symptoms worsened even more, and it became clear that I was dealing with a drug resistant strain of the bacteria. This is an increasingly common problem, and the Centers for Disease Control has gone so far as to label it an “epidemic.”
The role of probiotics
A lot of people wrote to me on social media and in the comments of my last post that I should try probiotics, which I took throughout the entire time. The specific strain that has been studied and shown to be effective in some cases against c. diff is sachromyces boullardi. I was actually already taking that prior to my diagnosis in an attempt to rebalance the self-diagnosed gut dysbiosis I thought was the cause of my diarrhea and unintended weight loss.
My experience with a fecal microbiota transplant (FMT)
As I wrote in my prior post on the topic, fecal microbiota transplantation (FMT) is the process of transplanting fecal bacteria from a healthy individual into the recipient and it has been shown to be effective for patients suffering from relapsing c. diff infection. Considered experimental for other conditions, it has actually received United States Food and Drug Administration (FDA) approval for use in treating c. diff because of these studies. Because of this, my doctor was able to do the transplant in conjunction with a colonoscopy and bill my insurance (score!).
Step 1: Securing a donor
This is was actually quite easy for me. My husband has the constitution of a horse (that’s a compliment, sweetie!) and was an obvious choice. The best donor is somebody in good health who has not taken any antibiotics for at least 90 days. He was screened for infectious disease through a blood test and a stool sample before being approved.
Step 2: Bowel prep
Again, this wasn’t a very big deal for me because I’ve done numerous bowel preps for colonoscopies and surgeries relating to Crohn’s disease in the past. The purpose of the prep is twofold: to clean out the colon so that the doctor can get good visualization (see my picture above) and to flush out as much of the bacteria as possible. I was on a liquid diet the day prior and then drank the solution as provided in two parts – the night before and then the rest in the morning on the day of the procedure.
Step 3: The donor does his “job”
There are a ton of good jokes that can be made here… Essentially, my husband had to produce a stool that was as fresh as possible, so he tried to time his eating and activity so that he had a bowel movement as close to the time we needed to leave for the hospital as possible. He collected it in one of those “hats” and we brought it with us in the back seat (I admit… that was a little weird. I thought about how we would explain that if we got pulled over…).
Step 4: At the hospital, preparing for colonoscopy
Just like with any other colonoscopy, I was directed to change into a hospital gown and an IV was placed in my arm. At this point, my anxiety level was getting pretty high and I was very grateful for the versed and propofol that soon flowed in! I dozed off just as the nurses started preparing the donor stool off in the other corner of the procedure room.
Step 5: The transplant and recovery
This part I was asleep for, of course. My doctor said he used four syringes of donor stool mixed with saline solution and introduced them into four different parts of my colon so that the whole thing was coated in the new “healthy” bacteria. When I woke up, I was directed to try to avoid a bowel movement for as long as possible and was sent home to recover from the affects of the anesthesia.
Within just a few hours I felt a vague sense of well being that I don’t quite know how to describe. I just felt… good! The next day I had a business meeting and recall driving in my car and thinking the world looked a bit brighter. Perhaps that was all just wishful thinking, but it felt good.
However, my symptoms did not immediately disappear. I continued to have diarrhea and after two weeks a follow up stool test was still positive for toxin A, though I did feel like I was improving ever so slowly. My doctor prescribed another long course of vancomycin, but I resisted taking it. Instead, I asked him to give me some more time and also a prescription for Enteragam – a serum-derived bovine immunoglobulin/protein isolate (SBI) that is generally used for patients with diarrhea-predominant irritable bowel syndrome (IBS-D) or HIV-associated enteropathy to support their nutrition. This was a recommendation from one of my loyal readers – Thank you!
I went on vacation with my family, focused on some serious stress reduction and relaxation while taking the Enteragam and continuing the probiotics. I held onto the vancomycin “just in case” but did not ever take it as my bowel function continued to slowly improve.
Then, last week… almost exactly four months after my initial positive test, I finally got the results I was looking for. All three of the studied samples were negative for c. diff!
The road ahead…
Even though the c. diff toxin is undetectable now, I still have a long road to complete recovery. I need to regain about 20 pounds and I continue to have less-than-optimal digestion and absorption (most of that due to the borderline short bowel syndrome I was left with after my multiple surgeries). The good news is that my Crohn’s disease has not flared up (again, I credit that mostly to diet though I am also taking a prescription biologic).
What I eat now
I call my current diet “paleo-inspired.” I am strictly gluten-free and eat mostly whole and unprocessed foods of the highest quality I can find to continue to promote a healthy gut. That means grass fed meats, organic produce, fermented foods, organ meats, and lots of bone broth. I eat minimal nuts (I don’t seem to digest large quantities very well) and I am on the fence about whether or not I can tolerate dairy. Grass fed butter and cream appear to be fine but I seem to be completely unable to digest lactose now so fluid milk is out. Low-lactose cheese should be fine, but I haven’t experimented it much.
Because I am actively trying to gain weight, I place a lot of emphasis on making sure I get plenty of “safe” starches and carbohydrates in my daily diet. That means that I do eat white rice at least a couple times a week. I also started eating soaked gluten-free oatmeal several mornings a week in an attempt to get more soluble fiber to continue feeding the “good” bacteria my husband generously gave me! This is most definitely NOT PALEO and I definitely struggled with the decision to try it after being mostly grain-free now for almost two years, but it seems to be helping a great deal.
Another challenge I have is that I have difficult digesting large amounts of fat. Not only do I not have a gallbladder anymore, I also do not have the portion of my small intestine that reabsorbs bile acids. The standard advice given to most paleo folks without functioning gallbladders is to take supplemental ox bile so they can eat more fat, but I have to be careful here because it is super easy for me to take too much ox bile, which can cause diarrhea too. It is a constant balancing act but I have found that loading up fat-heavy meals with a corresponding amount of soluble fiber (like that found in oatmeal) really helps.
The lesson here… One size doesn’t fit all. The grain, legume, and dairy-free idea of “Paleo” is a template and one I encourage all people who want to optimize their health to start with, but then be open to customizing to meat your own unique needs.
My health continues to be a work in progress. I like to say that becoming Gutsy By Nature is a journey, and not a destination! I continue to research dietary factors, conduct self experiments, and work closely with my medical care team as I balance the natural healing I’ve found so helpful with the tools that conventional medicine provides.
I sincerely appreciate all the personal messages from you all and hope that by sharing my story here, I am helping someone else struggling with similar issues.
Thank you again for all of your support!
Yours in health,