TMI about Diverticulitis

Pretty unusual topic here — but it’s one that (a) has been taking up most of my brain the last few days, and (b) will hopefully be useful search fodder for others who find themselves in a similar way. I spent a lot of time trying to figure out what the various stages were “really” going to be like. So away we go! I’ve tried to keep the “gross” factor to a minimum but some is inevitable. You have been warned.

How it started

Way back in the Summer of 2019 I landed in the emergency room with what I was pretty sure was appendicitis. I come from a proud family history of occasional stomach issues, but this hurt like crazy. It came on over the course of a few days — at first just crampy and “unsettled,” then painful, and then — pretty quickly — SERIOUSLY OUCH. The ER doc seemed to have a pretty good sense of what was up, but he played coy and sent me in for a CT exam anyway. Nestled amongst a bunch of “unremarkable” notations (I think my bladder is quite remarkable thank you) was the smoking gun:

Findings compatible with acute diverticulitis involving the distal descending colon with adjacent small volume of free fluid and 1.3 cm small area of likely phlegmonous change. No drainable collection at this time.

After nodding sagely at the report (and hopefully looking up the word “phlegmonous”), the doc explained to me that a ton of people over forty develop diverticula, little pouches or bulges in the colon. Nobody really knows why they show up, but they are more prevalent in the “developed” world, so it likely has something to do with our relatively fiber-poor diets. Typically they’re pretty benign — but for the lucky 5% or so diverticula can trap something on the way by, become infected, and turn into diverticulitis.

The inflammation that occurs from this infection has all kinds of awesome downstream effects, but in a nutshell it hurts like a mother. All things considered my case wasn’t that bad — on the extreme end the diverticula can actually burst and … well … you can imagine how things go from there. Yikes.

Thankfully, back in 1928 Alexander Fleming discovered antibiotics. A cocktail in my IV and an Augmentin prescription for home and within about a day and a half I was pretty well back to normal. Whew.

How it went

It turns out that the location of diverticula play a big role in whether a first case of diverticulitis is likely to recur: a recent study found 8% on the right (ascending), 46% on the left (descending) and 68% in the sigmoid (last mile). For some reason they rarely develop in the transverse section, again unclear why but hey, biology! Mine were in both the descending and sigmoid sections, so I was referred on to a surgeon to have a “chat” about options. Eek.

I showed up at my appointment with visions of colostomy bags dancing in my head. And indeed, I got a ton of information about the various ways diverticulitis can play out, up to and including a permanent bag. But on the upside, it turns out that many folks can manage the condition quite well through less invasive means. The surgeon suggested I see a gastroenterologist to give those a shot, which I dutifully did. Dr. RL was awesome and basically gave me a three-part strategy:

  1. Preventive. Eat a bunch of fiber but avoid “trappable” stuff like seeds, popcorn husks, etc.. I have become a loyal Metamucil patron and kind of freak out if I miss a day. Truth is, though, even my doc admits this is pretty anecdotal — more playing at the edges than making a huge difference. That’s ok, it’s easy to do and why tempt fate, right?
  2. Treat the early signs. More on this later, but if you do suffer recurrent attacks they get pretty easy to identify: low-level gassiness, cramping and/or constipation. There is some evidence that people can head off larger attacks at this point by using a four-part approach of: (a) warmth (heating pads or hot baths); (b) temporarily switching to a low-fiber diet; (c) walking and moving around a lot; and (d) taking OTC laxatives. I think this worked maybe once or twice for me, so not super-effective. But again, what idiot wouldn’t try it?
  3. Antibiotics. We all know the downsides of taking a ton of antibiotics and the serious risk of resistance. But when the only alternative is surgery, folks have gotten much more accepting of antibiotics as a way to knock back an attack. And they largely do work. Once Dr. RL got comfortable with my ability to distinguish an attack, she made sure I always had a course “in hand” so I could start the regimen as soon as possible.

The next 2+ years passed more or less benignly, with treatable attacks about two or three times a year. The pattern became very recognizable — generalized discomfort that would steadily focus into the lower-left side of my torso, exactly where those diverticula showed up on CT and by colonoscopy. I find the mechanics of it all both fascinating and disturbing; we really are just meat-based machines at the end of the day. Once the pain settled into its familiar spot and my fever started to spike, I’d start the antibiotics and usually it’d do the trick.

The most common antibiotic used for diverticulitis is apparently Levofloxacin, but since I’m big-time allergic to that it wasn’t an option. Next up is Augmentin, a combination of amoxicillin and clavulanate potassium that is designed to inhibit the development of resistance. Unfortunately by mid-2021 this particular cocktail became ineffective for my case and I ended up in the ER again:

Moderately severe acute diverticulitis is seen centered in the distal left descending colon, near the prior site of diverticulitis seen on the 2019 CT. Circumferential mucosal thickening extends over approximately a 6 cm length with the more focal inflammatory process centered on a single medially located diverticula. A moderately large amount of pericolic soft tissue stranding is seen as well as a small amount of free fluid seen in the left paracolic gutter and dependently in the pelvis.

Dammit! But the breadth of antibiotic development is remarkable, and there was another arrow in the quiver. Combining the antibiotic Bactrim (itself a combo of sulfamethoxazole and trimethoprim) and the antifungal Flagyl (metronidazole) is a bigger gun but was very effective at taking care of attacks. Amusingly we just came across Flagyl for our new puppy Copper, who used it to tamp down a case of Giardia he picked up with his litter — things we can bond over!

Alas, this all seems to be an arms race and my easy treatments were not to last. In the summer of 2022 while visiting my son in Denver, I developed an allergy to the Bactrim with some seriously weird side effects. No anaphylaxis thank heaven, but together with the traditional hives and itching my skin became like tissue paper — any rubs or cuts became open sores overnight. Super unpleasant and no longer a tenable option to be taking multiple times a year. Dammit.

Unfortunately, this left the antibiotic cupboard a bit bare. And frankly left me a bit freaked out — it’s harder to be blasé about attacks when there’s no obvious treatment in play. Luckily Dr. RL is awesome and got on the phone after hours to discuss next steps. Seriously people, when you find a good doc in any specialty, hold on and don’t let go!

How it’s going

The nut of our exchange was — probably time for surgery. Another referral and disturbingly-detailed conversation about my GI tract, this time with Dr. E, a colorectal surgeon affiliated with Overlake. As it turns out she was fantastic, taking a ton of time to explain the options and get into pretty grotty detail about how it all worked. I particularly appreciated the sketches and notes she left me with; a chaos of scribbles that felt exactly like a whiteboard session on software architecture. I had found a colorectal nerd — hallelujah.

Beyond the non-trivial pain involved in an attack, the big risks are that the diverticula develop (in order of increasing awfulness): (a) abscesses, in which pus gets trapped in the infected diverticula, making them more painful and harder to reach with antibiotics; (b) fistulas, which are abnormal “tunnels” between abscesses and surrounding organs/tissue … passing fecal material into, you know, maybe the bladder; and (c) perforations, where the stuff just dumps into the abdominal cavity. Look, I warned you.

As yet I’d been able to knock down attacks before any of these developed, but without a good antibiotic option that was no longer a slam dunk. And once they’ve occurred, surgery is way more risky, way more disruptive, and way less predictable. In Dr. E’s words, “like trying to stitch together wet tissue paper.” And almost certainly involving “the bag.” All of which made me quite disposed to appreciate the elective option — more formally in my case, “robotic laparoscopic low anterior colon resection.” Less formally, “cutting out a chunk of my colon and stapling it back together.”

In this exercise, the placement of my diverticula was actually an advantage. It turns out that — and again there are theories but nobody really knows why — you can improve outcomes dramatically by removing the part of the colon starting just above the rectum (the, I kid you not, “high pressure zone”). Unfortunately I can’t find a good link for this online but Dr. E clearly knows of what she speaks. Because my diverticula were in the sigmoid and lower descending colon, this made for a nice continuous piece to remove. Cool.

Prep for the surgery was pretty uneventful — some antibiotics (neomycin and flagyl, deftly avoiding the nasty ones) and a bowel prep just like for a colonoscopy. May I never see lemon-lime Gatorade again thank you very much. An early call at the hospital, quick conversations with Dr. E and the anesthesiologist, way too many pokes trying to get IVs into my dehydrated veins, and it was go time.

The last mile (I hope)

The surgery itself is just a technological miracle. Thanks to OpenNotes I was able to read the play-by-play in complete detail. Paraphrased for brevity and apologies if the summary isn’t perfect, but:

  1. They brought me into the operating room and put me under. I remember climbing onto the table, that’s about it.
  2. I was prepped, given a urinary catheter and some meds, and moved into low lithotomy position.
  3. They paused to double-check they had the right patient and all that — appreciated.
  4. They put five cuts into my abdomen, flipped me upside down into Trendelenburg’s position and inserted the various robot arms and stuff. Being upside down lets gravity move most of the “stuff” in the abdomen out of the way for better visibility. Inflating me like a CO2 balloon also helps with this.
  5. She said nice things about the attachment of my colon to the sidewall and made sure my ureters (tubes from kidney to bladder) wouldn’t get nicked. Also appreciated.
  6. She moved the colon into position and cut first at the top of the rectum, then in the mid-left colon just above the adhesions and diverticula. The removed section was placed in a bag and — get this — “left in the abdomen to be retrieved later.” Just leave that over in the corner, housekeeping will take care of it overnight.
  7. Here’s where it gets really amazing. The two open ends of colon were joined together using a stapler. I’m not sure this is the exact model, but it’s pretty close — check out the video (also embedded below because it’s so cool). Apparently this join is strong enough that that very day I was allowed to eat anything I wanted (I chose to be conservative here). Stunning.
  8. They closed me up (and did remember to remove the old piece of colon). Apparently my omentum wasn’t big enough to reach the repair site; typically they drape it there to deliver a shot of immune cells. My one big failing, ah well.
  9. The anesthesiologist installed a temporary TAP block to reduce the immediate need for opiods.
  10. They woke me up and shipped me off to recovery. The whole thing took about three hours, way less than expected.

I vaguely remember the very initial recovery being pretty painful, mostly in my back which I assume was from being in that weird upside down position for so long. I remember only shadowy flashes of my recovery nurse “Dean” who IIRC seemed amused by my demeanor … apparently I was effusively apologetic? Anesthesia is some weird sh*t my friends. By that afternoon I was in my room for the night and the pain moved into my gut (probably the block wearing off), but a little Dilaudid in my IV helped out quite a bit.

After this phase I won’t say the pain was irrelevant — it’s six days later and I still feel like (again Dr. E) “somebody stabbed me five times” — but it was totally manageable. Most importantly, when I would lay still there was almost no pain at all, so it was easy to catch my breath. The difference between pain-when-you-do-something and pain-all-the-time is night and day different. I took no opiods after that first night and really just 1000mg of Tylenol 3x per day was enough. No judgment for those who don’t have it so easy, I think I was super super lucky here — but at least as one data point it was pretty darn ok.

Milestones for going home were basically (a) walking around independently and (b) end-to-end bowel action. I was walking that first night, and it actually felt really good to do so — stretching out the abdomen (and my legs) was a great distraction from just sitting around. Getting into and out of bed was painful; the rest was no sweat. I was able to do this on my own and think the staff was probably pretty weirded out by the unshaven guy dragging around his IV pole all night like Gandalf’s wizard staff. Overlake has really nice patient wards and I must have looped around the 5th floor South and East wings a hundred times.

Bowel action was a little less quick to happen. Apparently with all the trauma the intestines basically shut down, and it takes some coercion to wake them back up. Walking helped, as did small bites of food (I had basically no restrictions, but kept it to cream of wheat and yogurt for the first bit anyways). Being able to limit opiods was also a plus here, so by day two there was a lot of rumbling going on. My first “experience” was distressingly bloody — more ew, sorry — but that was pretty much a one shot deal, and things improved quickly from there. A lot of gas, a lot of diarrhea, that’s just part of the game for a little while. Getting better every day!

I was able to head home the third day, and have just been taking it easy here since then. Nice to not be woken up for vital signs in the middle of the night. I do get exhausted pretty quick and have been sleeping a lot, but am confident that by Christmas I’ll be back in full eating form again. Jamon serrano, I’m coming for you!

All in all

I’ve been a caretaker on and off for many years, and worked in health IT a long time. But I haven’t been a “patient” very often; just a few acute incidents. It’s humbling and not super-pleasant, but a few things really made it bearable and I daresay even interesting:

  1. Great providers. I can’t say enough about Dr. RL and Dr. E (linked to their real profiles because they deserve the kudos). They answered all my questions — the ones where I was scared and the ones where I was just curious. They explained options. And they know their sh*t. Such a confidence boost. I should also mention in particular Nurse Wen of Overlake South 5 — I wish I got her last name! Her sense of personal responsibility for my care — not to mention ability to multitask — was remarkable and I am very grateful.
  2. Open information. I’ve gushed about OpenNotes before, but I can’t overstate how much better it is than “patient education” pablum. I read every note side by side with Google to help me understand the terms — and felt like I actually knew what was going on. Make sure you sign up for your patient portals and read what’s there — it’s good stuff.
  3. Letting folks help. They say you get emotional after general anesthesia, so I’ll blame that. But I still get a little teary thinking about all the people who’ve been there for me with help and texts and whatever. Especially Lara of course. I guess it’s OK to be the caregiv-ee once in awhile. Thanks everyone.

Still awhile to go, and there’s no guarantee that I won’t develop some new little buggers to deal with in the future. But so far so good on this chapter. If you found this screed because you’re on your own diverticulitis journey and are looking for real-world information, hooray! Feel free to ping me via the contact form on the site, I’m more than happy to provide any and all details about my own experience. Just remember, I’m a sample size of one.