Gall Bladder removal
Had cholesytectomy 4 months ago,for past 3 months have intermittent pain,right side under ribs,also travels to left side going up under ribs. I dread wakening up in morning for what lies ahead, usually loud gurgling especially right side of body,then the pain starts,my son picked up on hoarseness in my voice a few months ago when he phones me,were thinking acid reflux during night cause burning in my throat first thing,Had CT Scan on 17th Jan,I have to wait 10 days for result but the technician did say I had quite a bit of scar tissue.Doctor has put me on omoeprasole and peptac liquid ,Now I've hadph call saying my thyroid is very underactive, I've had hypothyroidism for 40 yrs a no d it's checked once a year and hasn't needed much tweeking, but I've just read that this latest medication I'm on interferes with the thyroxine I'm on!!!!!! I'm 76yrs of age and I don't want to spend the yrs I've got left in this pain,,wish I hadn't got my gallbladder out I never had problems with my stomach before that?
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Wow. It is really like reading exactly what happened to me. I've never spoken with anyone that had these exact same symptoms before.
Yes, same here on the athletic ability. My endurance fell off a cliff. I think I said it in one of my posts above, but I was a runner. Five miles every day without fail for years before. After my surgery, I tried to get back to it. Even two weeks post-op I tried. At first, I chalked up my lack of endurance as just recovering from surgery. However, I never got it back. Like you, my muscles felt weak, almost to the point of giving out. I was also in the best shape of my life going into the surgery.
I also told my family that I felt I had aged 2-3 decades in the space of a month or two. And I've never really recovered since then. I've tried and tried to get back into running. I still force myself to walk daily and I still weight train, but it's nowhere near what I could do before.
Like you, I had a lot of stress in my life, but only AFTER the surgery. I wasn't stressed at all prior to the surgery. The stress after was because I kept trying to push myself to keep up with what I used to do. That caused a lot of stress, along with the fact that I felt a lot worse. Eventually, I had to stop doing that because I just couldn't keep it up. I definitely know I went through a lot of physical and mental stress in the months following the surgery. I also lost about 30 lbs (and I was already normal weight) because I couldn't keep food down. I ended up with gastritis and bile reflux after.
Additionally, I'm a writer. The cognitive effects have had a massive impact on my career. My imagination is totally gone. I've been to a lot of doctors and specialists about the cognitive fallout. I also had an brain MRI. Nothing abnormal. And yet, there is a clear difference in before and after for me.
I've also suspected it has to do with sleep. I'm not sure what exactly is happening and none of my doctors know either. Like you, the constant gaslighting from doctors after left me with no answers. Most of the time I don't bother even telling them these issues any longer because they all say it isn't related to the surgery. Yet, I had none of these things before and all of them directly after and nothing else in my life changed.
I've had a lot of CT's (with and without contrast) since, so I suppose that could be an issue. I'd never had one before. So THAT is also something that changed. Plus the exposure to anesthesia. Though, I'd had some light anesthesia about 15 years ago when I had my wisdom teeth removed. I didn't have issues following that procedure. So perhaps the radiation or the contrast? I'm not sure.
Exactly like you, I can't tolerate caffeine AT ALL now. Prior to the surgery I was a caffeine fiend. I love hot tea, and always drank it clear up until bedtime...fully caffeinated black tea. Yet, never had issues with sleeping or the caffeine. Now, I can't drink even a cup in the morning. I'm jittery, my heart rate goes up, and I can't sleep at all that night. So, that's another similarity.
Scans:
Prior to the surgery: Never had a CT, MRI or anything but an Xray in my life. Like I said...I was healthy.
After my surgery: I've had a bunch of CT's now (with and without contrast)...probably 10-15 total. Doctors trying to figure out the issue. I had a brain MRI without contrast, but that was only this past year and I had ALL those symptoms prior, so it definitely isn't that. I've had anesthesia now 3 times: once for the gallbladder removal and I've had two endoscopes since. I've had some ultrasounds was well.
How I manage now:
I was taking a Bcomplex for awhile and that was helping some of my cognitive symptoms. I did test low in B12, B1, and vitamin D as I said before. Plus, phosphate, which is really rare to have a deficiency in. The Bcomplex seemed to help with the tremors I have and help my brain function a bit better. However, about a year in, my hands started going numb. It took about 3 months to find out that I cannot take B6 because it causes the numbness. Now I take B1 several times a week and B12 every other day. I take vitamin D every day. And, I take prescription phosphate about 3 times/week.
All of those things help, but they are not a cure. They haven't solved my issues, but they have improved my symptoms slightly.
I also have to take a bile binder (cholestyramine) because of the bile refluxing into my stomach. It causes gastritis if I do not take the bile binder. So I take half a packet at night and half a packet in the morning. I know it isn't the bile binder causing my issues because I did stop it for a little over a year. Nothing changed excepted I struggled more with gastritis.
My cognitive symptoms started immediately after surgery. I tried to write the following week and I couldn't. Again, I thought I was just recovering.
Again, personally, I think it is changes in digestion, nutritional absorption and a combination of things they don't understand yet. Just like the gut microbiome. They know that can even affect our serotonin levels and they know an imbalance in gut bacteria can cause depression (which I don't have), so I suspect that the microbiome is the key to our issues. Constant exposure to bile permanently alters the gut microbiome. It also alters our metabolism.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6352247/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8118133/
I think I am going to ask my doctor about an Indican test. I doubt they will do it because they won't run anything that isn't a super common test. I know that my bun levels have been low, which has to do with protein. I eat plenty of protein and I mix my own protein shake most days. So I'm not sure why my body doesn't seem to be absorbing it correctly anymore. I'm assuming THAT is the key to our issues.
See, elevated indican levels can be associated with low stomach acid and also poor production of bile. Well, I literally have to take a bile binder, but even when I wasn't...I don't think my body is producing the bile it needs. From what I've read, the gallbladder concentrates the bile, making it stronger. Without it, the bile isn't as efficient at breaking down nutrients.
Anyway, I've written a book here. Sorry. It's just you are the first person that I've found that shares my symptoms almost exactly.
I regret every day I had gallbladder removal. I had constant pain in my upper stomach area. Doctor said my gallbladder had sludge and needed to be removed. Fell for that. It never got better and digestion is a million times worse. Still have pain only more. If I would have gotten another opinion, I probably be fine. What the issue is, is I have a hiatal hernia. Now with the gallbladder gone, acid is backing up so much worse. New Gastro Doctor said the problem will get better, but will resurface and need more meds. Lifestyle as far as eating has to change. Sleeping on a bunch of pillows for elevation created neck issues. I bend over to do anything the acid is up in my throat. I bought a $5,000 bed to sleep elevated. So, GET SECOND opinions. FYI, Medicare allows it. A few hours of investigating other opinions may save you a lifetime of misery. Now I have a lifetime of extra issues now. My later years of my life are tossing and turning, getting up all night drinking water and expensive pills.
I have a hiatal hernia as well. I got it after my gallbladder was removed from vomiting so much. I was throwing up a lot of bile after. Anyway, for over a year I struggle...taking a PPI, sleeping with my head elevated and all that. I even bought the $5000 bed to sleep elevated too. It is uncomfortable as heck. The GI doctor kept telling me to treat the acid. Meanwhile, I NEVER had acid issue prior to removal.
Finally, after struggling for a long time, a doctor suggested I try cholestyramine. It is bile binder. I stopped the PPI entirely and started taking cholestyramine. I take a half a packet right before laying down for bed and a half packet in the morning. That clears the bile out of my stomach. THAT has given me my life back a little. It was bile refluxing up...not acid. And a PPI actually relaxes the sphincter between the stomach and the intestines, which increases the bile moving into the stomach making the problem even worse.
If I were you...I'd give that a go. I can now sleep flat again. That awful reflux is mostly gone. And things are a lot better. I really hope this helps you.
This article is an interesting read:
https://www.sciencedirect.com/science/article/pii/S2161831322002952
"The gut microbial influence on tryptophan metabolism emerges as an important driving force in modulating tryptophan metabolism. "
"Tryptophan is an essential amino acid being utilized for protein synthesis and, thereby, affecting the growth and health of both animals and humans. In addition to serving as a nutrient, accumulating evidence has revealed that changes in the gut microbiota composition affect the GBA by modulating the tryptophan metabolism (10., 11., 12.). "
"On the one hand, tryptophan serves as a sole precursor for the biosynthesis of the neuroendocrine transmitter serotonin and, subsequently, a pineal hormone called melatonin (21)"
"The tryptophan availability can be altered in a vitamin B6–dependent manner, as evidenced by an impairment of the tryptophan metabolism after a vitamin B6 deficiency (24)."
One thing it says is that tryptophan is cleared from the body via the liver by it producing an enzyme called IDO. People with inflammatory bowel disease often OVER produce IDO causing more tryptophan to be cleared from the body than it should be.
Another interesting this is the B6 issue. Funny enough, I was diagnosed with high B6 after a blood test, yet I am low in all other B vitamins. So I think that's some hint that this is the right tract.
In short, I think that our gut microbiome was affected and it did mess with the tryptophan pathway, which also affects melatonin and serotonin, which is causing most of the symptoms. But that's just a theory and I can't prove it. I thought I'd share the article though.
"Another interesting this is the B6 issue. Funny enough, I was diagnosed with high B6 after a blood test, yet I am low in all other B vitamins. So I think that's some hint that this is the right tract."
B vitamins are used in combination in metabolic processes so a deficiency in some can result in buildup of others. Sadly, I didn't get a complete blood test while I was having the worst symptoms, but several months later. A regular blood count test didn't show anemia or anything else. Months later, when I got a test that included vitamin B12, B1 but not B6, I had a buildup of folate and homocysteine. Both of these require B12 to be metabolized to other essential amino acids, so their buildup would indicate a long term B12 deficiency that interrupted this process. It's possible B6 was high, but I'll never know that. The neurological symptoms I've had match B12 deficiency as well as B6 toxicity, but also serotonin and dopamine imbalances.
When I mention neurological issues to my gastro, he says he doesn't know anything about them and that for those, I should work with a specialist who does. When I asked him which specialist would that be, he didn't have any suggestions. When I tell the neurologist about the nutrition deficiencies, she tells me that I should discuss that with gastro. It's been discouraging, and I've had to rely on my own research and experimentation for the most part. Gastro neurologists exist, but I haven't been able to find one yet.
I have learned so much about vitamins and digestion in the past two years, sometimes I feel I know a lot more than the specialists I'm talking to. Gastro wants procedures, like colonoscopy, and not complex digestion cases. Neuro has imaging and EMG and if nothing shows there, well, nothing's wrong, and these symptoms must be psychological. I understand to some extent as what we know about our bodies is just the tip of the iceberg at this point in time.
The problem in my case is that I had so much going on during that period of time, so I can't say it's POCD due to anesthesia, or it's metabolism, or some of each. At least I know it's not Parkinsons, MS, or ALS :-). I've gotten a lot better, and if I hadn't gone into this as strong as I was, I think my life would have been over.
I noticed an unusual symptom immediately after the surgery that seems uncommon, and I can't find any reference to it. Normally, when we empty our bowels, we have a feeling of satisfaction, most likely some surge in serotonin or dopamine. It feels good. Well that went completely away. I brought it up with Gastro, and he said it could be due to the bowels not emptying entirely. I am going to hunt this down and see if I can do the pill camera test that measures the function of the entire digestive system, starting with stomach acid, time to empty, bowels motility, etc.
That's where I am today. I am still not losing hope that we can figure it out and that I will get my life back.
Hey, I was wondering if your symptoms got any better or completely went away? I am 2 months post op from gallbladder removal at first I experienced full body numbing, euphoria & a delirium like state, that went away now I feel better but still feel like mentally I cannot focus the same and I am constantly fatigued. My attention spam is not great either I still get dizzy out of random & I have a 6 month old baby and an almost 3 year old toddler. This has got to be the hardest thing to deal with by far. I just want to get back to being my old self I'm only 21 years old.
Hi @kellysv, and welcome to Mayo Clinic Connect! It sounds like you have your hands full with beautiful kiddos while trying to heal your body from surgery at the same time. The feelings you are having are scary and make it so, so much more difficult. You can do this!
I thought I’d follow up and tag @terri9, and also invite @garrison to hopefully provide an update on their journeys.
I relate to some of what you describe and have made the most progress once I found a doctor willing to walk through my symptoms with me. It sounds like you have seen a surgeon as well as a OB/GYN recently. Do you have one in particular you trust, or knows the most about you?
Hey Janell, unfortunately I don't. I recently moved and have a new PCP they just did blood work last week. I'm still awaiting the results I'm hoping their are findings so that I can get a prescription that will make my symptoms better or if possible get them to fully go away so that I can go on with the same quality of life I had beforehand. Anything in specific that made your symptoms go away?
It sounds like you have a lot of change happening @kellysv, just what you don’t need when you are trying to heal your body and find a groove you can maintain. Finding a new PCP is a step in the right direction!
I have not had my gall bladder removed so I’m not 100% confident we are dealing with the same thing. I know you are wanting a straightforward fix and I do hope your doctor helps you find that. For me, it has not been easy. It has taken persistence in my diet and activity level combined with medications to make slow and steady progress. I’m not there yet, and I could not do it without finding doctors committed to helping me.
I hope your new PCP becomes a great resource for you! Have you learned anything from testing yet?