Why does my stupid body hurt so much?
May 14, 2015 10:37 PM   Subscribe

After years of mysterious pains in my side, treatment for colon cancer in 2014 and a colonoscopy yesterday, last night I ended up in the ER howling in agony for hours. My doctors aren't really sure what happened. YAobviouslyNMD, but I'm hoping the smarties of Ask Metafilter can offer some ideas about what the hell is going on with my stupid goddamned body.

So. I've had pretty much endless health troubles, many of them abdominal, as long as I've been an adult. I have bad IBS, which may be relevant to some of this. The last few years I've had this dull pain that comes and goes, along the bottom of my ribs on the right. A few times my doctors thought it was my gallbladder, but they'd do ultrasounds and everything was clear so they'd say it was probably cartilage inflammation and/or IBS. Last year I was diagnosed with colon cancer (due to a rare genetic condition that makes me have lots and lots of polyps) and I had a partial colectomy. The recovery was rough, but I survived to tell the tale.

In early 2014, a few days after the colonoscopy/endoscopy that diagnosed my cancer, I ended up in the ER with a pain in my lower back/beneath my right shoulder blade, on the right. It was an unbelievable cramping feeling, and I thought something had been punctured during the test and I was dying. They gave me morphine and a few hours later I left feeling much better. I figured it was a case of killer gas because they'd pumped my guts full of Co2 during the tests.

A few months ago I had another colonoscopy for my ongoing post-cancer monitoring, and a few days later I got the awful cramps in my lower-right back again. It wasn't as bad this time, and I didn't go to the ER and it got better. Flash forward to two weeks ago, and one morning I woke up with an awful pain beneath my right shoulder blade, another dull cramp. The pain kept moving over to my ribs and up between my shoulder blades. It came out of nowhere and just got worse, not unbearable but bad enough and scary enough to send me to the ER. They did blood work and a urine culture and everything looked OK. They had no idea what was wrong.

After a few weeks of feeling relatively normal, yesterday morning I was scheduled for yet another colonoscopy for my cancer monitoring. I did the fasting and the prep, and a few hours before the test I got a pain in my ribs, right back and shoulder blades. I also had a really bad headache and some neck pain. The head and neck thing felt like maybe dehydration related to the prep, but coming as they did with the other stuff I was worried again about my gallbladder. I had the colonoscopy and they removed a few more polyps. They also did an ultrasound, to check out my gallbladder. I was expecting to experience some bad cramps a few days later, as has become a tradition at this point.

Instead, about eight hours after the test my back/shoulder/rib pain became a sharp, astonishing pain, like being literally stabbed over and over for hours. I ended up in the ER, screaming in agony. It took a lot of morphine to control the pain. They did blood work and a CAT scan. The ER doc said I do have gallstones, but he was confident those weren't causing the pain. (Apparently my gallbladder didn't look inflamed and it looked like the stones weren't lodged anywhere bad.) My WBC was elevated and I guess my colon looked irritated, so he was kind of guessing it was some sort of colon infection and put me on some major antibiotics. I spoke to my gastroenterologist today and he said he doesn't know what's wrong but he doesn't think it's the gallstones either. He guessed it was a bad reaction to the polyp removal and/or reaction to the Co2. I was in some pain today, not too bad, but tonight it has been ramping up again. I took some Vicodin the ER doctor prescribed but I am really scared about ending up in unbearable agony again and having to back to the ER just to get some more morphine.

Every theory about what this could be is like a bad flow chart, each one hitting some point that doesn't work.

My idea, that it's my gallbladder: So, so many ways this would fit. I have like nine out 10 symptoms for a gallbladder attack. But my doctors insist it's not that, for the reasons above.

It's a reaction to the colonoscopy/polyp removal/Co2: Well, my previous reactions happened a few days after those procedures, and that was a cramping pain. This was just a few hours later, and the pain was sharp, sharp, SHARP. Also, I was in the ER two weeks ago with pain in these same areas, well before the colonoscopy/polyp removal, and I was feeling pretty bad yesterday BEFORE the colonoscopy/polyp removal.

It's an infection: Well, when I was in the ER two weeks ago, my bloodwork looked fine. (They didn't do any CAT scans then, so I can't say if my colon looked weird or not.) Also, these same areas have hurt plenty in the past, leading me to think this is some longstanding problem, not a new infection, and it's kicking into high gear lately.

I expected to feel much better today. I did wake up feeling better, but as I write this I am in serious pain again despite taking Vicodin. At least (knock wood) so far it's not as bad as it was last night. I am going nuts here, and any ideas or reasonable speculation would be welcome. I am at the end of my rope, and can't live like this.
posted by Ursula Hitler to Health & Fitness (24 answers total) 1 user marked this as a favorite
Why can't they treat the gallstones, even if they don't think that's the source of the pain? I mean, you're not supposed to have gallstones, and removing them could certainly be indicated, even in the absence of pain. If these doctors won't do it, maybe you can find some doctor that will. Your theory makes a lot of sense, and seems worth trying.
posted by 3491again at 10:49 PM on May 14, 2015

Dude my two ultrasounds (one at an ER visit) a CT scan and HIDA (gallbladder function test) were all normal. They yanked my gallbladder out and sent it to path and it was NOT normal. Look up Funtional Gallbladder Disorder and get a general surgeon to get that thing out.

Not medical advice just my exact experience. This sounds like classic gallbladder.
posted by Crystalinne at 11:27 PM on May 14, 2015 [5 favorites]

And as an example. I printed out the criteria for Funtional gallbladder disorder and went to my doctor letting them know I had all the symptoms and I was on the surgeons office the next day and getting it taken out the following Monday. The gastro never even suggested that it was gallbladder and just kept adding more ibs drugs. Sorry for the rant I just really think the gallbladder is a nasty and sly organ that causes more problems than doctors seem to think. (And don't get me started on people telling me it was just the IBS. I had that exact same extreme cramping pain in the lower right.)
posted by Crystalinne at 11:34 PM on May 14, 2015

My brother was recently diagnosed with Epstein-Barr (mono). He was hit particularly hard with right-side back pain and thought he might have gallbladder problems based on my own experience and that of his GF (both of us ended up having our gallbladders removed after similarly excruciating back pain). For him, it ended up being an enlarged spleen from the mono that caused his suffering. Hope you feel better soon.
posted by a lungful of dragon at 11:42 PM on May 14, 2015

Response by poster: 3491again and Crystalinne, the ER doc and my gastroenterologist were both absolutely certain this wasn't my gallbladder, and as much as that feels counter-intuitive to me, my gastroenterologist is kind of a big deal in the field (God bless Obamacare!) and he gives lectures at medical conferences and stuff. He also seems like a genuinely compassionate, decent guy and he's listening to me and spending quality time on my case. If I can't trust him, I don't know who to trust. He says he doesn't know why I feel so lousy, but he is really sure it's not my gallstones. They say it could be several things - an infection, a reaction to the colonoscopy/polyp removal, etc. - but while they are vague about what it is, they are frustratingly certain it's not my gallbladder.

It feels really likely to me that this is a gallbladder thing and soon I'll end up needing the damn thing taken out. But for now my doctors are not on board with that at all and they say I should take the antibiotics and watch this for now. I'm trying to do that and I can cope well enough when the pain isn't bothering me so much, but when the pain hits it can be off the scale.
posted by Ursula Hitler at 1:28 AM on May 15, 2015

It sounds just terrible, I'm sorry :( Is the Mayo Clinic an option for you?
posted by cotton dress sock at 1:29 AM on May 15, 2015

Welcome to my horrible, painful world, friend. I am not a doctor. I just live with a very painful stomach.

Firstly, have they given you an endoscopy? Gastritis/ulcers can produce terrible, terrible pain, with symptoms much like your describe. Have you tried ranitidine or a proton pump inhibitor like zoton or somac etc? Worth a shot.

Secondly, gall bladder disease can encompass many things beyond gallstones. Crystalline mentioned one thing but there are lots of others, eg sphincter of oddi dysfunction. These things are more unusual than gallstones, but someone has to have em! There is also a phenomenon with rather small stones that can block the gall bladder periodically, involving terrible pain, but it doesn't show well on a scan (though you would have expected some inflammation in general if this was the case).

Thirdly, an ultrasound/scan should have picked it up, but pancreatis (and other disorders of the pancreas) can also involve profoundly intense pain.

More abstractly, there are some liver conditions that can also cause this kind of pain.

That's all I got. It's a long road friend, but you will get there, I believe. Remember that, for gastro issues, diagnosis is 80% of the battle. Best of luck, buddy, I'm thinking of you.
posted by smoke at 2:11 AM on May 15, 2015 [2 favorites]

Honestly I wonder if it's not gas. You're not the first person I've heard describe this kind of sharp, intense pain after a colonoscopy or a laparoscopic surgery where C02 is used. I've read that the C02 can irritate the phrenic nerve, which can refer pain up from your abdomen into the shoulder. The fact that your blood work is normal, your symptoms seem to subside within a relatively short time, and you seem to primarily experience this kind of pain in the setting of a scope makes the gas pain theory seem reasonable. Trapped gas can cause excruciating pain.

Are you able to take some short walks at this point? The narcotic pain meds you've had recently might prolong your problems a bit because they have the side effect of slowing gastric motility, but some physical activity might counteract that.

Your history of IBS and having had a colectomy might make you more prone to this painful problem. It sounds like you have a good GI doc, which is helpful. Before your next colonoscopy, I would talk with him about whether there is any way to perform the procedure that minimizes the use of C02 or if anything else can be done proactively to reduce the chance of this pain occurring. Hope you feel better soon.
posted by little mouth at 6:31 AM on May 15, 2015 [1 favorite]

Can you correlate the pain with what you eat? I had my gallbladder out years ago. There was a two-week gap from when I got the diagnosis to when the surgery was done. My GI doc told me to avoid anything fatty during that period. Well, one night I just flat-our forgot, and had pizza. I really paid the price, with a terrible gallbladder attack that night.

I hear you that you have a great doctor, but nevertheless, I think you should get a second opinion on possible gall-bladder removal.
posted by merejane at 7:20 AM on May 15, 2015

I came here to mention all the things smoke mentioned, plus to caution you, as merejane did: If they do say it's the gallbladder, make sure they're damn certain they're right. Sometimes a cholecystectomy can cause scarring and issues with the biliary tree, plus leave you unable to really eat anything with much fat in it at all for months or years. And sometimes once they remove the gallbladder, you find out the problem is actually sphincter of Oddi dysfunction. And then sometimes, if you get an ERCP to check that out and try to fix it, it can give you pancreatitis, and that can cause even more pain. I know way more than I ever wanted to know about this stuff, and it can be a terribly rough road. I'm sorry you're having this occur—just be sure you consider all the angles, even if the pain is telling you to hurry up and make a decision. The progression I outlined is kind of a worst-case scenario, but I know someone who's been through it all, so it's definitely not outside the realm of possibility. Take care.
posted by limeonaire at 7:48 AM on May 15, 2015 [2 favorites]

I had one episode in my life when I fainted with unexplained excuciating stomach pain, was rushed to the ER in an ambulance in utter agony, pumped with nausea-inducing drugs and still hardly able to bear the pain, and some hours later discharged home after none of the tests turned anything up and the pain slowly died down. Their best theory? Gas.
posted by Dragonness at 7:50 AM on May 15, 2015 [1 favorite]

I don't have a lot of time but I can give you some quick thoughts:

As smoke said, there are a bunch of different "gallbladder problems", and knowing the differences between them is going to be useful for you if you want to have a productive conversation with your doctor about them as possible diagnoses. Cholelithiasis is gallstones. Biliary colic is pain from gallstones. Cholecystitis is gallbladder infection and inflammation. And then there is also the sphincter of Oddi dysfunction that's been mentioned - the sphincter of Oddi is sort of the valve that lets bile out of your gallbladder into your GI tract. Look these up online for more information.

You know you have cholelithiasis, from the sounds of things, and you know you DON'T have cholecystitis (negative ultrasound). What is less clear is whether the pain could be biliary colic or related to the sphincter of Oddi - and by the way biliary colic is much more common than a sphincter of Oddi problem.

If your doctors know that you don't have cholecystitis (no inflammation, no infection, gallbladder doesn't need to be emergently removed, etc), how can they determine if you have the other two problems? First of all, by the history. When does the pain happen? Pain from gallstones ought to occur after eating fatty meals, because eating fatty meals is what causes your body to say "OK, need to digest all this fat, let's put out some bile." It shouldn't just randomly happen here and there. And it shouldn't have any relevance to a colonoscopy. So that's probably why your docs are saying they doubt it's gallstones giving you pain.

Yes, your episodes of pain happened at different time periods after the colonoscopies. But they ALL happened after colonoscopies. That seems to be a key piece of evidence pointing away from gallbladder and towards gas as a potential culprit.

Taking the approach that "it sounds like it could be gallstones maybe, so find other doctors who will take your gallbladder out" - that's foolish. Having your gallbladder out is a major abdominal surgery and any doctor who would do it without a clear reason probably isn't a very good doctor. limeonaire points out only a few of the potential complications of the procedure. There are other tests that could be done to look more at your gallbladder function, like a HIDA scan. But I doubt even this test would be recommended unless you ever have the pain and it's NOT after having a colonoscopy. Pain in your right flank could also be caused by a kidney stone. But why would kidney stones always happen after colonoscopies? It would be awfully coincidental. Pancreatitis typically causes pain around the midline just under the ribcage that goes through to the back, but I can promise you that when you went to the ER, lab tests were checked for pancreatitis. It's part of the standard workup for upper abdominal pain.

Final thought - I've seen tons of cases like what Dragonness describes. The majority of people who come to the ER with abdominal pain (so presumably pain bad enough that they feel it may be an emergency) don't get a specific diagnosis. That means there are a lot of things that can cause abdominal pain that's pretty bad, but where the cause is not life threatening and is never determined. Given the temporal relationship of your pain with colonoscopies, and the fact that with your familial condition, you're going to need to keep having regular and frequent colonoscopies, you should talk to your GI doctor about any ways to potential reduce the possibility for post-procedure pain and for them to help you be prepared with pain medication if you do get such pain. Hope that is helpful.
posted by treehorn+bunny at 8:41 AM on May 15, 2015 [4 favorites]

Response by poster: But they ALL happened after colonoscopies.

All of them except the episode two weeks ago. That's what complicates this for me. That one was totally random, my bloodwork was all clear and the ER doctors had zero idea what it was about. They guessed it was a pre-shingles outbreak, because of the location on my back and because I'd had that before, but they were very open about that being a wild guess. That pain was bad, but it wasn't anything like this thing the other night. If that ER visit two weeks ago was maybe a 6-7 on the pain scale, enough for me to groan without screaming, the more recent visit went up to 11. If birth hurts that much, nobody would ever have a second kid.

I don't know if fatty food aggravates this or not, and right now I'm honestly too scared to experiment.

Is getting the gallbladder out really that bad? The reading I'd done made it sound like a quick laproscopic deal and you were home the same day. Given some of the stuff I've been through I wasn't too worried about a surgery like that, but now I'm worried I should be worried.

(Note to mods: Apologies if this is thread-sitting or chatfilter-y or whatever, but I am at my wit's end over this mess and the advice here is helping. I feel like the more I answer people and clarify things, the closer we may get to some answers. Hopefully some of the back-and-forth here will be helpful to others with similar mysterious ailments.)
posted by Ursula Hitler at 10:40 AM on May 15, 2015

Everyone says it isn't a big deal, but it can be a big deal. We're just saying be cautious.
posted by limeonaire at 12:00 PM on May 15, 2015 [1 favorite]

Is getting the gallbladder out really that bad? The reading I'd done made it sound like a quick laproscopic deal and you were home the same day.

Most gallbladder removals are laparoscopic. If there are complications that prevent that kind of surgery, they will need to open up the patient, but that was rare (~5%), as my surgeon told me a couple years ago. I had the laparoscopic surgery, was brought in around 7 am and was out of the hospital around 7 pm. Healing time from the three small incisions was about 3-4 weeks. The first two days of recovery were painful due to the CO2 used to inflate my insides during the procedure.

Some doctors (including mine) may say that this surgery is no big deal, and you might avoid such people. There can be issues (post-cholecystectomy syndrome) that affect ~10-25% of patients, depending on whose research you read. A competent surgeon should be able to discuss all post-surgery issues and advise honestly on risks, complications and symptom management. You might also want to coordinate post-surgery care with a GI specialist before any procedure is done.
posted by a lungful of dragon at 12:26 PM on May 15, 2015 [1 favorite]

If you read up, you can find some disturbing statistics about how many people have symptoms that aren't resolved after gall bladder surgery, how many get new symptoms and side affects. I think they're is a tendency to view it like an appendectomy or something, but it is far from the slam dunk it's often portrayed as.
posted by smoke at 3:57 PM on May 15, 2015 [1 favorite]

Any chance you were eating some "sugar free" foods/candies? Those sugar alcohols can give you screaming gas pain (I was once hospitalized from the pain due to some sugar free chocolate).
posted by saradarlin at 9:07 PM on May 15, 2015

When they found that I had a gallbladder "full of rocks" (as they said), I also had pancreatitis and that was what was causing the pain that sent me, after three days of it, to the ER. They had to wait for my pancreatitis markers to come down before they took out the gallbladder, but the surgery itself wasn't bad at all - I've had the "high scope" colonoscopy several times and the cholecystectomy wasn't any worse; in fact, I think it was easier. I had to eat a gentle diet for a couple of weeks but since then have no trouble at all digesting fatty food (surgery was about 8 years ago) other than some occasional diarrhea or constipation, but still not as severe as it was before the surgery.

Your situation may not be at all similar and I'd trust treehorn bunny's advice absolutely - just wanted to note that my own experience was 1) supposed IBS, 2) pancreatitis and gallstones and unbelievable pain, 3) successful surgery with much improvement.

Oh - and the pancreatitis pain was right between my shoulder blades, not on the left side where I'd expect it. I've also had a kidney stone, on the left side - I'm not sure which hurt the worst, but I was more than happy to see an injection of Dilaudid headed my way each time.

Hope you're feeling better soon.
posted by aryma at 2:12 AM on May 16, 2015

Response by poster: Thanks so much to everybody who's responded. I have been freaking out in a big way over what happened to me this week, and it is so great to have a place like this where smart folks are there to offer their expertise, anecdotes, speculation and advice. As of now my doctor wants me to take antibiotics and wait and see what happens, and so far I'm still having some pain but I haven't been back to the ER. If my situation changes in a major way (if I end up back in the ER and they end up operating on me, for instance) I'll update here. Otherwise I'm trying very hard to trust my doctors and ride this out.

Ugh, the body is a prison.
posted by Ursula Hitler at 10:18 PM on May 16, 2015 [1 favorite]

do you think the pain that occurred a few months after the colonoscopy was the same thing as the other episodes? One thing that could make your situation more confusing would be if you had two different problems, each very painful and in the same general vicinity. For example, the post-colonoscopy episodes are due to gas, and the other episode could be a kidney stone. Kidney stones often give a clue of some blood on your urinalysis, but not always.

if it helps, pain from air in the abdomen (irritating the diaphragm) classically radiates to the shoulder. Pain from a kidney stone is classically in the flank, and can change position over time as the stone moves. Unfortunately, a lot of things in medicine are not absolutes.

just a thought. Talk to your GI doctor, they are your best resource. Relative to other surgeries, a gallbladder surgery should be quite straightforward. But even straightforward surgeries carry risks of infections, blood clots, risks of anesthetics/airway trouble, etc. Why would you take even a small risk of a serious downside if it might be for nothing? Try to rule out other potential causes first if it's just a "hey, it might help, who knows" thing.
posted by treehorn+bunny at 8:41 PM on May 19, 2015

Nthing "Gas pain can make you feel like you're being horribly murdered". Bear in mind that people can get that type of pain without having recently been medically inflated. Since you have been pumped full of CO2, which seems to correlate to having triggered episodes, is it possible that the one anomalous (i.e. not linked to a procedure) episode was from "normal" gas, possibly in combination with a stressed-out nerve being ready to spasm, or in some other way the procedures and situation made you more prone to this sort of pain from "normal" gas?

Given that it's a gastro-related issue, you may want to start keeping a food diary (rather than, at this point, changing your diet) to see if there is any correlation with fatty foods or any of the other possible food triggers others have mentioned.

Also, please please confirm with your doctors that there is no concern with the type of cancer to which you are predisposed having metastasized. I recently lost a friend of the family to what everyone thought was a spleen injury, and it turned out to be pancreatic cancer, which can apparently be incredibly aggressive. It sounds like you're being monitored already and have conscientious doctors, but given your other health issues, it can never hurt to ask and keep asking.

And good luck!
posted by sarahkeebs at 9:38 PM on May 19, 2015

Response by poster: Update: I've had ongoing low-level pain since I last posted, and my situation is more confusing than ever. A few days ago my gastroenterologist told me that he didn't think it was my gallbladder, because my GB showed no signs of inflammation and GB pain doesn't usually go on for day after day like this. But then the other night I had an episode of awful, cramping pain in my upper abdomen, and it lasted about 45 minutes. I told my gastro about it, and now he thinks I should talk to a surgeon about the risks and benefits of GB surgery. So it looks like I'm probably headed for surgery after all, even though we're still not 100% sure what's going on.

Sarahkeebs, in recent months I've had blood work, ultrasounds, x-rays, CAT scans and a PET scan of my abdomen. If this was more cancer, I sure hope at least one of those tests would show it!
posted by Ursula Hitler at 3:37 PM on June 5, 2015 [1 favorite]

I was just looking back through my recent answers, and since this is still open and it's only been a month, I was curious: Did you ever get a HIDA scan, Ursula Hitler? That's one of the ways they can test your gallbladder and biliary function, but they usually like to do it when you're having the sort of episode you describe, so they can see what's happening in there in real time during the scan. But that can help actually confirm whether something is going on, gallbladder-wise.

Anyway, I hope you're doing OK! If there's any further advice we can offer while this thread is open, please let us know!
posted by limeonaire at 10:53 PM on July 13, 2015

Response by poster: Thanks for asking, Limeonaire! It's hard to post an update about this without it turning into a long mess.

I have not been given an HIDA scan, nor has one been mentioned to me. My understanding is that when I went to the ER and was in a ton of pain, they did some scans that showed no inflammation in the GB and the stones weren't lodged anywhere they weren't supposed to be.

I have not gone back to the ER, but while I have generally been feeling better I still have bad times. Right now my doctors say that they would be OK with removing my gallbladder if that's what I wanted, but they couldn't guarantee that will make this pain go away. At some point I may need to have some hardcore surgery relating to my cancer situation, and the recommendation is that I hold off on any surgery, see how this goes, and if I ever have the hardcore surgery they could just take out my gallbladder as part of that.

A number of people from Metafilter have reached out to me about this, and I am so touched by that. I've had some hard times these last few months, and your compassion and advice has been much appreciated. Mefites rule!
posted by Ursula Hitler at 12:36 AM on July 14, 2015 [2 favorites]

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