I survived surgery! I’m now about a month out from surgery so as promised in my previous post, here’s a second post to share the lead-up to and recovery period after gallbladder surgery! Again this will include a lot of detail to hopefully help others who are going through this, but also to share my experience with anyone who knows me and is curious.
Warning: This post will be more gross that the last one, and will include pictures of surgical incisions, my giant gallstone, and discussion of gross medical stuff including poop. Read at your own risk!
The Gastroenterologist
I didn’t actually get to speak with a gastroenterologist doctor until 4 days before the surgery. Last fall, after my ultrasound, my GP referred me to the gastroenterology office, and I met with the Physician’s Assistant (PA) there. She is the one who recommended a HIDA scan and upper GI x-ray series. After the HIDA scan, I reported back that it triggered a gallbladder attack that evening, and based on that and the discomfort I felt she referred me to surgery.
Meanwhile, I had to go back and forth with the gastroenterology office about the upper GI x-ray because they kept asking me why I hadn’t done it yet and I kept telling them that they were referring me to a place that doesn’t have the equipment to do that imaging. I finally had the imaging done in January, and I had to share the radiologist’s report back to gastroenterology myself because apparently doctor’s offices just are incapable of communicating with each other. The imaging was negative, but I asked to do a follow up with someone from gastroenterology anyway because I had some lingering questions that I wanted to ask prior to surgery.
Twice they scheduled me to meet with someone, only to realize that the person didn’t take my insurance, so they had to push back the appointment. Finally they tried to schedule me out into June and I told them, no, my surgery is May 10 and I want to speak to someone before that. (Remember, this is the office that referred me to surgery, they should have known that I had surgery scheduled, but apparently the surgeon’s office didn’t tell them) They finally squeezed me in with the actual doctor on May 6. I feel that it is worth mentioning that when I showed up on the 6th for my appointment, they still didn’t know why I was there. The nurse asked me “So, you’re here for GERD?” (Gastroesophageal reflux disease – which is my official diagnosis for my reflux issues). I had to remind them that, no, I am here to talk about gallbladder surgery which I am having in 4 days, because your office recommended it.
At this point, I was pretty much sure of surgery: my gallbladder had been acting up over the last month much more than usual, which was actually reassuring about the right course of action, and I had read the research that said large stones come with an increased cancer risk. But I had a bunch of questions about the specifics of my symptoms, and I was also just looking for some reassurance. I’ll go through the questions that I asked and his answers (feel free to skip ahead to where I talk about surgery if you don’t want to read all of this):
Why are my attacks so intermittent?
He said that larger stones often have very intermittent symptoms – sometimes they shift and block things, other times they don’t. Whereas small stones can actually get stuck in the duct, so that you get immediate and extreme pain.
For a long time I mistook my rare attacks for bad gas because they do come with gas. Why would a gallbladder attack be associated with gas?
Basically he said you get gas when undigested stuff gets farther down your digestive tract where bacteria can break it down. So whether it’s fiber, or lactose (if you’re lactose intolerant), or fat if your gallbladder is not releasing bile properly, that can be a source of gas.
A few years ago I changed my diet to have more fiber and it seemed to reduce the frequency of attacks. Likewise I’ve notice that when I’m on vacation and eating out all the time and having a lot of fatty food but also walking around a lot, I usually don’t have attacks. Could gut motility be related to gallbladder attacks?
He was pretty skeptical of this, and suggested that it pointed to a possible overlap between gallbladder issues and IBS issues. He also said that having symptoms 3+ hours after eating sounds a lot more like IBS than gallbladder.
For what it’s worth, I think he’s wrong on this. I think there is a difference between “textbook” gallbladder attacks caused by small stones blocking the bile duct and large-stone gallbladder attacks that are more of a cramping or spasm due to the gallbladder having to work too hard to release bile around a big fat stone. This isn’t just a hunch, the HIDA scan showed pretty clearly that my attacks are a delayed gallbladder reaction. I had only mild discomfort when they injected the CCK during the scan, but that evening I had an attack because my gallbladder was fatigued and started spasming.
What should the HIDA scan feel like for someone without gallbladder issues?
He said that for people with normally functioning gallbladders, there should be little to no discomfort, so the fact that during the scan I was saying that “maybe” I was feeling something similar to my attacks, that suggests there’s an issue. When I asked why I would have an attack later that night though, he literally said “That one, I think I’m gonna have to take a pass.” But again, I personally think it’s the distinction between textbook gallbladder attacks and large-stone or hyperactivity attacks.
My HIDA scan showed an EF of 79%, could that be thrown off by having a large stone taking up a lot of volume in the gallbladder?
He seemed skeptical of this idea but I’m not sure I explained it very well. Basically, my thought was that if I have a big golf ball taking up half the volume of my gallbladder, then if my gallbladder ejects a large fraction of its available volume, maybe that is equivalent in terms of bile released to a gallbladder without stones ejecting a smaller fraction. And likely having to work a lot harder to do so. That might be an explanation for why I have digestive symptoms of having too little bile but a high EF.
He also briefly mentioned the relatively new diagnosis of “hyperkinetic” gallbladder, which is generally considered to be EF of 80% or higher, so I would be right on the borderline. He said that there isn’t a lot of data about that yet, but bottom line you can have issues if you’re releasing too much or too little bile.
My suspicion is that my gallbladder was sort of “acting” hyperkinetic because the large stone made it have to work too hard to release enough bile.
I read that something like 10% of people have “post-cholecystectomy syndrome” with long-term digestive problems.
He said that 10% sounds like a “fantastically high” number, and that likely what happens is that in the medical literature, there is a bias toward over-reporting because it’s better to report something that is unrelated than to not report something that is related. In other words, false positives are better than false negatives. So he said that it’s more rare than the literature would suggest.
But he also said that diarrhea after fatty meals is not uncommon, especially in the first couple of months, and that some people if they continue to have issues take medication pre-emptively if they know they are going to have a fatty meal, similar to how someone who is lactose intolerant might take a pill if they know their upcoming meal will have lactose in it.
I have a family history of Crohns/Ulcerative Colitis, and I’ve read that having the gallbladder out can increase risk for intestinal cancers, should I be scheduling a colonoscopy sooner than usual?
His answer on this was kind of unclear, he basically said that if he had seen me earlier, he would have ordered an endoscopy and colonoscopy before going forward with surgery, just to have a full picture of what is going on in my upper and lower GI. But then he also said that I can probably wait until age 45 before doing a colonoscopy. So I’ll probably bring this up with my GP when I go back to him for a regular checkup and see if I should get checked sooner.
All in all, although I got some answers to my questions, I was disappointed with this visit with the gastroenterologist. I was hoping for more reassurance about surgery, but instead got a noncommittal “yeah, you should probably do the surgery, but don’t be surprised if it doesn’t fix everything”. I also didn’t love the apparent tendency to diagnose everything as IBS when the HIDA results indicated pretty clearly that it was my gallbladder even if the reaction was delayed from what it is “supposed to” be. I really did not appreciate the statements about “well, if I had seen you sooner, I would have ordered XYZ additional tests before going forward with surgery.” As if I had not been seen by his own physician’s assistant 6 months ago, as if this last minute appointment was my fault and not the fault of his office’s scheduling incompetence.
Anyway, let’s get on with the surgery.
Surgery Prep
In the lead up to surgery, the main things that needed to be done were a pre-op phone call, some blood work, and washing with special soap. The pre-op phone call was simple enough, they just asked me about medical history and what medications I was taking, and gave instructions about what I could eat when. I had just received a pre-surgery info packet in the mail when they called, and there were some differences in instructions. An important one was that the packet said no food or drink after midnight, but the nurse on the phone said that clear liquids were fine up until a couple hours before check in. This meant I could have some apple juice the morning of the surgery to keep my blood sugar up.
The pre-op bloodwork was super easy, just walked into the lab, they took one vial of blood (thankfully, I got a skilled tech and barely even felt the needle), and they handed over the packet with pre-op instructions and the special soap.
The soap was pretty weird. You have to use it the night before surgery and the morning of surgery. Each time, you’re supposed to thoroughly wash yourself with regular soap, then turn off the water and wash with the special hospital soap that feels and smells like a combination of hand soap and hand sanitizer. Then wash yourself again with it without rinsing! Then finally rinse. The idea is to super thoroughly disinfect your skin to reduce the chances of infection. I doubt I’ve ever been cleaner than the morning of my surgery!
Surgery: Pre-Op
My surgery was scheduled for 12:30pm, so I had a relaxed start to the day. We got the kids off to school, went for a walk, then I did my shower with super-soap and changed into my comfy day-of-surgery clothes. I got some supplies set up for my recovery “nest” by the couch in the den, picked out some possible low-fat meals to eat during recovery, and then it was time to go.
At the hospital, we checked in and I was given a tracking beacon (which I handed off to the pre-op nurse) which would automatically update my status, so my wife could tell where I was in the process just by looking at screens posted around the hospital, so for example if she wanted she could go get lunch in the cafeteria and tell when I got out of surgery. Pretty cool, though we didn’t need it too much.
The nurse led us back to the pre-op area where I had to change into the very stylish hospital gown, socks, and hairnet. They even had a pre-heated blanket to get under!
They did the usual height, weight, blood pressure stuff, and got me set up with an IV. My veins are easy to see under my skin, so you would think I would be easy for stuff like blood draws and IVs, but I think I am often dehydrated, and my veins tend to slip away from the needle so I’ve had issues in the past. Unfortunately, the restrictions on eating and drinking before surgery didn’t help with this, and my main nurse was unable to get a good vein despite some painful digging around. She ended up calling over a different nurse armed with an ultrasound machine. Even with the ultrasound they had to poke around a bit, but finally they got the IV placed and secured. In retrospect, I should have hydrated a lot more while I was allowed to before surgery to help with placing the IV.
The lull while we waited for the ultrasound to show up was the perfect opportunity to ask the question that was most on my mind during pre-op: Can I please keep my giant gallstone? (And could they please take some pictures of my gross gallbladder after removal?) The nurse asked around and told us that likely they would have to send everything to pathology and then I could pick it up from pathology in a couple of days.
Then there was a bunch of paperwork to sign to show that I was who I said I was, that I understood what surgery I was there for, the associated risks, etc. The anesthesiologist came by and I talked to him for a bit about potential nausea, and he gave me some medication ahead of time and adjusted the IV medication to hopefully prevent nausea afterward (I was worried about throwing up with fresh incisions in my abdomen). He said that nausea from anesthesia tends to correlate with how prone to motion sickness you are. I am not very prone to motion sickness, and I ended up having basically no nausea after my surgery or from my pain meds so this seems to be anecdotally true.
Then the surgeon came by and did a quick rundown of what the surgery involves, where the incisions will be, and what to expect for recovery. He asked if I had any questions and I felt like I should have some, but didn’t so he went off to get ready.
There was a lot of waiting around. My surgery was slightly delayed because the previous surgery took a little longer than planned, but even if we had been on time, there’s a good amount of down time. I was worried that I was going to be super-anxious on the day of surgery but I was actually not too bad. Because I am a huge dork, I kept thinking of this line from Lord of the Rings:
Essentially, all of the decision making and researching and worrying was done, so on the day of surgery it was just my job to show up and go with the flow.
I have had a very similar feeling before when a major milestone or event is coming, and at a certain point you just have to kind of surrender to the passage of time and accept that it’s going to happen. I got this for major deadlines and milestones in school (such as qualifying exams, PhD defense, etc), and I still get it sometimes for work deadlines. At the end it’s just a sort of relief: “well, this thing is going to happen and then it will be over.”
The main thing I felt while sitting around waiting on the day of surgery was not so much anxiety but a surreal feeling. It’s just really hard to mentally accept that in an hour, someone is going to cut holes in your abdomen and remove an organ and then supposedly you’re just going to go home and be fine in a week. This was part of the reason I asked them to not only let me keep the stone, but take a picture of my gallbladder once it was out. Just a little additional piece of evidence to say “yes, that is a thing that actually happened, they really did cut that thing out of me.”
Surgery
Finally the time came for surgery. They wheeled my bed out of the pre-op area, let me hug my wife goodbye, and then wheeled me down the hall to the Operating Room. Along the way, they kept me talking, making small talk about being a scientist and that maybe one of the nurses had seen my public talks in years past. Pretty obviously doing their best to keep me distracted. As we chatted, one of the nurses pushed some medication into my IV which made me extremely sleepy in a matter of a minute or so.
I only saw the operating room briefly. My main impression was that there was a ton of equipment in there, including giant TV monitors showing test patterns. I was too out of it to really understand at the time, but in retrospect those must have been the screens they used to view the video feed from the laparoscopic camera. I also was struck by how many people were involved in the surgical team. I am not sure what I expected, but there’s really a whole team involved, it’s not just one surgeon and one nurse.
They wheeled my pre-op bed up right next to the surgical table, and I had to shuffle myself over onto the table. At that point I was already quite out of it. I remember being surprised at how irresistibly heavy my eyelids were, and trying my hardest to open my eyes and just being unable to do so. They told me they were giving me some oxygen with a mask and I remember thinking “this mask is on crooked” and that’s all.
Post-Op
Next thing I knew, I was back in the pre-op area, waking up from what felt like a very deep sleep. My wife was there, as was a nurse or two. My memories of the immediate post-op period are very hazy, but pretty soon after I woke up I know my wife was excitedly telling me that she had my stone! No delay for pathology, they popped the big gross stone in a sample jar and gave it to her! There were also some pictures of my gallbladder in my body, after removal, and after the stone was removed, all taken with the laparoscopic camera. They also said that I apparently had a few more smaller stones that were hidden by the big one on the ultrasound (this was apparently not accurate, no other stones were listed on the pathology report when I got it at my follow up appointment).
Ok, are you ready for gross pictures?
Last chance to turn back!
Top Right and Bottom Left: Gallbladder after removal, you can see the stone is lodged in the neck.
Bottom Right: Stone removed from the gallbladder.
My post-op pathology report said that my gallbladder showed signs of “chronic and acute inflammation” but thankfully no indication of “neoplasms” (i.e. cancerous growths).
There was not much to post-op. Nurses came by and gave us instructions about recovery, what to do and not to do. (Do not: overdose on painkillers, lift heavy objects; Do: walk as much as you’re able, stay hydrated, eat bland food at first) My incisions were all glued shut, so there was essentially no wound care to worry about. They basically said just don’t soak in the tub (showers ok) and let them come loose naturally in a couple of weeks. (I am now 1 month post op and the final bits of glue just came off this week)
I had read about people in recovery having to stay until they showed that they could walk, or until they urinated, but I don’t remember any such tests. They basically gave us our instructions, had me change back into my clothes, and sent us home. I was wheeled out to the curb in a wheelchair and then climbed into the car and we went home.
Recovery: Pain
I remember very little of the rest of that day. I think basically I took pain meds and slept.
I was and am surprised by how little my incisions hurt. The most incision pain was from the large one under my sternum where they took the gallbladder out, and the general path from there to where the gallbladder was. Presumably that’s where the most internal bruising and damage occurred. All the rest of my incisions have been pretty darn near painless.
More painful than any of the incisions was the gas pain. I had read about this beforehand, but it’s very strange. Basically, when they do laparoscopic surgery, they need to be able to see what they’re doing inside your body, so they kind of inflate you with carbon dioxide. At the end of surgery, they expel as much of this as possible, but there’s often a bit left. This left over CO2 can irritate the phrenic nerve, which is the nerve that controls your diaphragm. This nerve connects to the spinal cord up in your neck, and so when it gets irritated by gas, even though the gas is in your abdomen, the pain can manifest in the right shoulder. For me it was behind the right collarbone and for the first couple of days it was a pretty persistent and unpleasant ache.
Even though I knew it wasn’t actually something wrong with my shoulder, I kept rubbing it as if it were a tense muscle or a cramp that might go away. I had heard that walking helped with gas pain so I took a very slow and uncomfortable walk around the neighborhood but it didn’t seem to help all that much. Maybe it actually did help the gas dissipate, but at the time it felt like it just made the pain worse because I had to breathe harder.
I found that I was most comfortable sitting in a recliner with a bed pillow across my abdomen and an electric heating pad around my shoulders. Sometimes, I would put an ice pack under the pillow on my abdomen to keep swelling down.
Between the gas pain and the pain from the big incision, I had trouble taking a deep breath for the first couple of days but once the gas dissipated and I had healed a bit I felt much better. If I hadn’t gotten sick I would have been feeling pretty good by day 3 or 4.
Strep Throat? Really?!
That’s right, about three days into my recovery, I came down with strep throat. At first I was afraid I was getting a cough, which would have been very painful for my incisions. But instead, it developed into the worst case of strep throat I’ve ever had. Very quickly, my tonsils were far more painful than anything relating to my surgery. Like being stabbed in the throat every time I swallowed even saliva or water. At the peak, I woke up in the night in significant pain and with a fever. I was quite grateful that I had pain medication from the surgery, which I took at night to help fall asleep with the strep throat. My 4 year old also came down with strep at the same time, which for him manifested as a sore throat and vomiting. My poor wife was stuck taking care of a vomiting child and a useless sick adult. She is the best.
I don’t know if the strep is something my kid brought home from preschool and it just wiped me out because I was already weak from surgery, or if it’s something that I caught at the hospital and brought home. In any case, another lesson learned is to wash hands super well after being at the hospital because you really don’t need to get sick while recovering.
When I went to the doctor for the strep, they warned me that the test can take a long time to show a positive result, like 20 minutes. 5 minutes later the doctor came in and said “yeah, your test is already clearly positive. The nurses are very impressed.” The bright side of having strep is that it responds pretty quickly once you get medication. It still took nearly a week to feel all the way better as my throat healed but the worst of it was over in a couple days once I had some antibiotics.
Recovery: Sleep
Back to surgery recovery. I was really worried that sleeping on my back instead of my side would be really difficult but I didn’t actually have much trouble. I held a second normal bed pillow across my abdomen and rested my hands on top and was able to sleep decently. I was generally just very tired, usually going to bed early and waking up early, and taking naps in the afternoon. I sometimes napped back in my bed, but also often dozed off while reclining on the couch. Between the surgery and the sickness, my body was just wiped out.
Recovery: Food and Digestion
TMI warning: This section is going to talk about poop. It’s kind of an unavoidable topic when it comes to gallbladder issues and surgery.
One of the main things I have been worried about with this surgery has been whether I would be trading being able to eat anything I want with only rare (once or twice a year) pain, for a lifetime of low-fat food and chronic diarrhea. At about two weeks post-op I was feeling pretty good and thought I could basically go back to normal, but unfortunately I’ve gotten worse since then.
In terms of food, I tried to take it very slow, starting off with things like white rice, plain bread with honey (no butter), low-fat soups, applesauce, bananas, etc. I also stayed hydrated with a lot of gatorade and water. Slowly, I graduated up to small servings of low fat meals like chicken breast, tuna, etc. My appetite was pretty low for a while after surgery, which I think is normal. Being unable to swallow anything without pain due to strep kind of messed up my progress and I was living off soft stuff like broth, soups, applesauce, and yogurt for a while, but once that cleared up, I started slowly adding fat back in and for a little while was fully back to normal.
I was given stool softeners to take to counteract the constipating effects of anesthesia and narcotics, and they told me to start taking them immediately the day of surgery. It took a few days for my digestive system to “wake up” and once it did I did have diarrhea and soft stools for maybe a week. Then as I shifted my diet back to normal, I was back to normal for about a week and was optimistic that I had avoided the chronic diarrhea that I had heard about.
Unfortunately that brief period of feeling normal was temporary. I now always have loose stools and gas and have to go to the bathroom urgently within 30-60 minutes of eating. The most confusing thing is that I also get the urge to go sometimes when I don’t actually have to. Apparently all of this is due to the effects of the constant trickle of bile into my intestines. Bile acts to stimulate the gut to contract and also causes fluids to be released into the intestine – the result is a laxative effect.
I’m still experimenting with diet to see if I can make things better, but so far it’s very hard to figure out. All the advice out there says to stick with low fat, but if there’s too much bile, it seems like I would want to eat some fat to “use it up”. There is also advice that you should eat more frequent, smaller meals, so I am going to be trying that out in the coming days. Basically a Hobbit system: Breakfast, second breakfast, afternoon tea, dinner, supper, etc.
Conclusion
All in all, the surgery and recovery were much easier than I anticipated. I am really amazed at how well the incisions have healed. One of the holes is taking a little longer because there is a bit of the internal stitches sticking out, but it’s not painful, just a little itchy. My abdominal muscles are almost entirely back to normal, though I have been trying to be careful. Lately I have been having some more aches and pains in the gallbladder area, so I’m not sure if that is still some healing going on or if it is due to the digestive issues.
A couple weeks ago I was very optimistic about the digestive recovery, but now I am less so. The thing I was most worried about with this surgery was that I would go from being able to eat anything with only rare symptoms to having constant diarrhea and having to stick to low-fat foods. So far it is looking like the latter is exactly what is happening, which is very disappointing. I’ve heard that this is pretty normal for the first couple of months so for now it’s just a matter of experimenting with diet and hoping that things improve.
Leave a Reply