Crohn's patient advocate of South Asian descent from New York, United States, describes
her lived experience with several bouts of Clostridioides difficile infection (CDI) while navigating multiple challenges with inflammatory bowel disease
(IBD).
I was diagnosed with inflammatory bowel disease (IBD), specifically ulcerative colitis
(UC), via colonoscopy in January 2006 at the age of 22. I had a mild case of inflammation
mainly in my rectum and sigmoid colon, diagnosed mainly because my father had passed
from Crohn's colitis turned colorectal cancer at a young age.
Once I was considered in remission in October 2007, I traveled to Mexico from New
York to celebrate my 24th birthday. During my travels, I ate mostly fruits and salads,
in an attempt to not aggravate my condition. And I unfortunately picked up what is
proverbially known as “Montezuma's revenge,” a type of traveler's diarrhea that is
transmitted in Mexico to which native Mexicans may be immune but tourists, like myself,
are not.
Returning home, my gastroenterologist prescribed a quinolone antibiotic named levofloxacin
based on my symptoms not resolving after a week. I never really felt like myself again
after that and within the next month, my condition flared badly. Come January 2008,
I was going watery, foul-smelling diarrhea 30 to 40 times per day and was unable to
return to work. I remember being hospitalized soon thereafter and being treated for
both a severe flare-up and an infectious disease called Clostridioides difficile infection (CDI).
I was told that CDI is a very contagious infection that could be caught in the community.
I was also told that antibiotics like levofloxacin can wipe out the gut flora creating
spores that can proliferate in the intestines known as CDI. I was later told that
a diagnosis of IBD can be associated with higher risk of CDI.[1]
I was initially treated with metronidazole but what I was left with was a very severe
flare-up of colonic and rectal disease courtesy of my IBD. Over the next several months,
it became clear that nothing would curb this flare-up. We advanced my medications
from 5-aminosalicylic acid to prednisone to mercaptopurine to infliximab.
It was colectomy surgery in July 2008 that finally gave me relief, but it was a major
decision and a tug-of-war ensued between my family and my physician regarding having
my colon removed and an ostomy placed. Concerns around marriageability surfaced so
I tried Ayurveda and other alternative therapies prior to colectomy and I worsened
significantly. I suffered many complications postcolectomy as I was very malnourished
dropping from 61 to 38 kg. Due to a fluid collection after surgery, I had been placed
on intravenous Zosyn (piperacillin/tazobactam) via a peripherally inserted central
catheter line for 2 months.
Within a few weeks of completing the Zosyn, I had CDI again, this time in my small
intestine with an ileostomy, which I was told was very rare.[2] Given the number of times I had to empty my bag, I became severely dehydrated and
was hospitalized again in October 2008. This time I was spending my 25th birthday
in the hospital with hazard signs around me instead of celebrating.
It was very challenging to get the CDI under control the second time. The infectious
disease specialist had to add vancomycin by mouth to the metronidazole I was already
taking. The CDI did eventually settle after a few weeks, but I remained terrified
knowing that CDI could return at any moment even in the small bowel.[2]
In February 2009, I went on to have proctectomy surgery and a j-pouch created along
with the ileostomy reversed. My doctors and I had decided to avoid antibiotics given
my CDI history. However, even before my takedown surgery to make the j-pouch fully
functional, I began to experience inflammation of the j-pouch, known as pouchitis,
leading to many of the symptoms I had with IBD prior to my colectomy.
This put my doctors and me in a dilemma, as I clearly needed the antibiotics. For
the next few years, I was mostly on antibiotics due to chronic refractory pouchitis
alongside fistula and abscess development in the perianal region. Given the perianal
fistulizing disease component plus granulomas beyond the j-pouch, my diagnosis was
then changed to Crohn's disease from UC. To prevent CDI, metronidazole was added to
ciprofloxacin to prevent CDI. This combination worked for a few years, but in 2013,
I was put on heavy doses of prednisone again with the development of erythema nodosum.[3] We started the conversation around putting me on biologics again and before we could
do that, CDI reared its ugly head again and that too in my j-pouch. This time I thought
it was food poisoning but that watery consistency and distinct foul smell made me
quickly realize what was happening.[3] I was again hospitalized in November 2013 and the tests kept returning negative
for CDI so I was transferred to a more sophisticated hospital where they said I was
definitely positive for CDI.
This third time with CDI was the most challenging. My j-pouch felt tired and weak
and I was suffering from significant rectal burning and rashes. My gastroenterologist
and I discussed fecal microbiota transplant (FMT), but he was concerned about how
effective it would be in a j-pouch patient.[4] I had to be treated several times with metronidazole and vancomycin. Even after
I tested negative for CDI, I continued to have a postinfectious diarrhea and was diagnosed
with IBS-D (diarrhea-prone irritable bowel syndrome). I was prescribed the following
in hopes of curbing the diarrhea: (1) making an enema out of VSL-3 DS powder and inserting
into the j-pouch once a day, (2) taking a couple packets of EnteraGam (bovine colostrum
powder) orally everyday, and (3) taking 2 pills of Saccharomyces boulardii daily. My physician said S. boulardii can bind to the CDI toxin, which could prevent recurrence and may help with the profuse
diarrhea.[5]
Fortunately that cocktail worked like a charm in slowing down the bowel movements
in early 2014. However, my IBD worsened after my third bout of CDI. Within weeks,
I developed hidradenitis suppurativa around my groin, which ultimately ushered in
multiple new rectovaginal fistulae and the excision of my j-pouch in late 2014.
Today, I remain CDI-free with a permanent ileostomy for the last the past 8 years
but I follow many preventative measures. I always eat hot foods and take warm drinks
especially while traveling to prevent traveler's diarrhea. I also take probiotics
and/or drink kefir regularly. Whenever I do need antibiotics, I follow it with a short
course of S. boulardii.[5]
Nowadays, there is a lot of hope for CDI patients. With the advent of new medications,
including fidaxomicin and bezlotoxumab for instance, outcomes have improved.[6]
[7] Additionally, FMT has emerged as a mainstay for CDI.[4] While I hope to never contract CDI again, it is important for us as patients to
know our options and advocate for the best therapies possible in our care.
The truth is that many IBD patients globally are struggling with CDI and/or other
gastrointestinal infections/mimics in addition to debilitating symptoms of IBD.[8] As patients, we do not anticipate such infections on top of an IBD diagnosis. Knowledge
could help with prevention and also with treatment and management. My hope is that
gastroenterologists can conduct more patient education to help patients and their
families understand how difficult it may be to diagnose and manage infectious comorbidities
and what signs and symptoms to keep an eye on for timely management.
