In Search of Healthy Poop

When we were first diagnosed with clostridium difficile (c. diff) last November, Cyrus's school nurse didn't want him to come to school anymore. I remember being frustrated and thinking it wasn't a big deal. He had to be on antibiotics and symptom free to come to school, and he had to have his own quarantined changing area separate from the other children. I remember feeling this was completely overboard. Now, eight months since Cyrus had his first c. diff symptoms, where we are STILL fighting this, I realize how very very wrong I was.

Because c. Diff sucks! It's incredibly contagious. Hospitals can't seem to get rid of it. Spores can live on surfaces for like five months. It's become antibiotic resistant. Hand sanitizer and most disinfectants won’t kill it either. The only thing that works for sure is heat and bleach. If you can’t get the diarrhea under control it can kill you through dehydration, or if it colonizes your colon it can kill you by causing your colon to burst. Approximately half a million people in the U.S. get it each year, and 29,000 of those people will die within a month of their diagnosis.

People are most likely to contract the bacteria when staying in a hospital or nursing home, especially if they've recently had a course of broad spectrum antibiotics because antibiotics wipe out your good bacteria in your gut, making it ripe for colonization by these c. diff spores. Having a g-tube is a risk factor for contracting c. diff as well because the invading evil bacteria doesn’t have to go through the soft tissue of your mouth and throat where your immune system is active. Instead, any of this bacteria that gets in his tube has direct access to his gut. C. diff is more likely to affect seniors over the age of 65, but there are now documented cases of it tearing its way through day cares too.

As mentioned last time, Cyrus had a second relapse of c. Difficile after his bout of pneumonia. This was attributed to his use of broad spectrum antibiotics. At that time, we were referred to a GI specialist at UCSF for exploring the idea of a fecal transplant. A fecal transplant is where they take the poop from a healthy person and insert it into your system. The idea is it will reset your gut biome by introducing it to all the good bacteria that should be there. It has been shown to be remarkably effective in treating a bunch of different gut issues and infections, including c. Diff. There is less research on the ideal gut biome for pediatric patients though, so they usually wait until your third relapse before they recommend the procedure.

In March, we met with that GI specialist and made a plan. She ordered the fecal transplant procedure so that it could be prior authorized in advance, but we waited to schedule it. In the meantime, he was put on another long-term course of vancomycin (we call it vanco), a narrow band antibiotic that targets c. diff. And we were told that if he ever had to take a broad-spectrum antibiotic he should take vanco at the same time.

He made it through that course, and lasted an additional nine days before his symptoms reemerged on a Friday evening no less. (Fridays are annoying because you can’t talk to doctors as easily). We made the executive decision to put him back on vanco because we still had refills left and letting it run unchecked is awful! And his symptoms cleared up by Sunday. I called the following Monday to schedule the procedure anyway because while these long vanco courses seem to keep things at bay, they are clearly not getting rid of the underlying infection completely. Then I messaged the GI doctor for further instructions.

She wanted us to take another lab test to confirm that his diarrhea was caused by c. difficile. (So annoying!!) She said we could try to test while Cyrus was still on vanco, but that if it came back negative, we should take him off, let symptoms reemerge and test again. All before our scheduled procedure, which is less than two weeks away at the time of these instructions!

I can't explain how panicked this approach made me. I don't want him to go through an unnecessary unpleasant procedure (it’s the same as a colonoscopy). But letting c. diff go unchecked scares the crap out of me! Blood in the stool is considered a severe symptom, and is a sign your colon isn't doing well. The first time Cyrus had blood in his diaper (December), I did research on this disease. That's when I learned that this can kill you. That once blood shows up it could be just a few days away from doing just that. Cyrus has gotten to that point twice now.

Not to mention that I have a three-month-old baby in the household as well and this stuff is so contagious! I already have separate changing areas and mats for both of them. I do their laundry separately. I’m constantly wiping counters and bins (and cell phones) down with bleach. Like I don’t want her to get this either, and letting him get to the point where he has symptoms puts her at risk too!

So, I really don't want to let this go unchecked, but I know from prior testing that if he's on vancomycin, the test will be negative. So, against my maternal instincts we took him off vanco, and I became an anxious mess. He can't tell me how much his tummy hurts or doesn't. I was smelling all his diapers (a particularly putrid strong smelling odor is a telling sign of c. diff apparently), obsessed with whether or not the smell is the same or worse than the day before.

Four days in, he had a stool that was so liquid we couldn't collect a sample because his diaper absorbed it all. That's got to be c. diff, right? But the next day, he has a blowout and it's definitely looser than normal, but not quite to what I would call diarrhea. It definitely is pungent though. We can at least collect a sample. He was also very cranky and lethargic all morning. (Does that mean his stomach hurts?!) I don't like it. But since we got a sample, we can put him back on vancomycin.

Which worked wonders! The next day he was happy, active, and his stool was more solid. And I was feeling loads better.

Only the freaking test comes out negative! (He had a positive test in March). I swear life is gas lighting me because now I'm doing nothing but questioning my perception of reality. Like his symptoms abating with the introduction of vancomycin, and coming back with its absence suggest that c. diff IS the culprit. Maybe I just collected a sample too soon? Or maybe he has something totally new that also responds to vancomycin? (Please, no!) Or am I being hysterical and seeing what I expect to see? (See! Gaslit! It sucks when you feel like you can't trust yourself).

Anyway, the GI doctor said we should proceed with the colonoscopy anyway to see what else could be going on that might explain his symptoms. She said that if it looks like there's damage caused by c. diff we could do the transplant at that time anyway.

Now I'm wondering (panicking) if I keep him on vancomycin and it is effective in suppressing the c. diff, will his colon look like it has c. diff even if it does. Should I take him off and let it run rampant just so that if he still has c. diff. his colon will look bad enough to warrant the transplant? Will he get a colonoscopy now, not get the transplant, and have symptoms reemerge later and need the transplant anyway? Like, I don't want him to have to do this twice if we could just do it once! It requires general anesthesia and a colon cleanse the day before, which many older people in my life tell me is not fun.

I'm just spiraling. And I hate c. diff more than ever. And the crazy thing is that this could kill him if I just let it go and it's not an infection that is even related to his disorder! Though apparently, he most likely picked it up at one of his various doctor's appointments, so maybe if he didn't have this disorder, he never would have been exposed to it, but that's not the point!

Anyway, I sent all my spiraling questions and concerns to the GI doctor after her latest set of directions. And her response was "We can do the transplant. No worries! ;)"

I feel so so so relieved. But also, why couldn't you just say that last time, so I didn't have to spend the last two days spiraling in anxiety! Or better yet, why require the lab test at all (apparently, I've been told by a certain beloved Infectious Disease Doctor that many doctors put too much trust in the lab test, and that the interaction with vancomycin is more indicative of a c. diff infection) when our original plan was to schedule a fecal transplant as soon as diarrhea showed up a third time?!

Anyway, I'm fine now. (Let’s pretend anyway). And Cyrus will hopefully be fine soon.

EDIT: I wrote this over the course of the last two days, and was just editing for posting today. And while I was editing, the GI doctor sent us a message basically trying to scare us into backing out of the procedure (apparently, someone died recently from a fecal transplant because they contracted e. coli from the donated fecal matter). I just wish that if she felt that this was the wrong decision, she would just say that and explain why, rather than trying to manipulate us into the decision she wants us to make. (New Edit: apparently, it's less likely she's trying to manipulate me, and more likely that she's freaked out herself because the FDA issued a warning about this the day before - story now linked). If she insists on a positive test and wants to postpone it until we can confirm that it is in fact c. diff, I’m open to that too! I just don’t want him to get a colonoscopy and NOT get the transplant. So, I’m back to spiraling. Yay…

...

General update:

Cyrus started the ketogenic diet six weeks ago. This normally requires a hospitalization, but they made a special plan for us to implement it slowly after struggles with pneumonia and having a new baby at home who doesn't need to spend ANY extra time in a hospital even as a visitor. So we’ve been introducing the diet slowly, and just three days ago made it to the full 4:1 ratio of fat vs protein and carbs.

Every time we’ve gone up on the ratio, Cyrus has reflux, irritable moods, and takes really long naps. After about three or four days most of those symptoms seem to abate. And the best news though is that his seizures have dropped from 2-3 per day, to 2 per every six days! He’s been so much more aware when he is awake (and has happy bouts in between the irritation) and I think him not having seizures everyday just allows him to be more present! It’s awesome.

In conclusion, the keto diet is definitely rough on his system (no constipation though! Maybe c. diff is helping with that…), but appears to be helping him neurologically a lot. We are cautiously optimistic, and are going to stay on the diet for 12 weeks and then reassess. (Some of Cyrus’s seizure treatments in the past have had a bit of a honeymoon period, only for the therapeutic benefits to wear off after 4-6 weeks).

Eliana is fourteen weeks old. I can say that as of three weeks ago she doesn’t have c. diff (yes, I had her tested after mucus started showing up in her stools). She's just broken 11 lbs and is capable of sleeping just over six hours in a row, but she thinks five is fine most nights. She's been busy experimenting with tactile sensation and textures and strange vowel sounds that mommy can't emulate. She's mastered the call and response part of conversation. She grabs everything and tries to put them in her mouth, though she's been mostly unsuccessful as her own hand gets in her way.

She enjoys watching her brother roll around all over the place and likes to sit with daddy while he's watching anime. She's decided that bottles aren't THAT bad if you let her take them on her side and baths are actually kind've fun... maybe. But mommy leaving for almost five hours to go to a graduation is absolutely unacceptable! Last week, she's figured out she can get out of tummy time by rolling to her back. And just yesterday, she started laughing!!