Post-cholecystectomy or gallbladder removal surgery

Hello everyone,

What happened:

On July 4th, 2020 I had a cholecystectomy. I was 36 years old and never had a health problem before other than pernicious anemia (low B12). I was very active and healthy overall...normal BMI. I went to the hospital with sudden onset pain. I thought it was a kidney stone or my appendix. They did a CT and said it was my gallbladder because it had a few stones. I ask if I had any kidney stones or issues with my appendix. They said no to both. They said I needed to have my gallbladder out or it could burst. I ask them if there was any other medical tests they could run to see if it was my gallbladder. My pain was down toward my belly button (not in the upper part) and I'd never had digestive issues of any kind before. I also had a lot of blood in my urine, which I could see for myself just visually. They said there was no other tests they could run. I trusted them and let them go forward with the removal. I ask them about possible bad outcomes. The doctor said 1% get permanent loose stool. I thought 1% was pretty good odds that I would be okay and I was willing to take that risk.

After:

Directly after surgery, I had HORRIBLE pain in my stomach. Easily a 10 on the pain scale. The nurses all said they had never seen that before. The pain slowly eased to bearable over a few days. Two weeks later I went back to the ER because the original pain I'd gone to the hospital for was still there. The doctor there looked at my previous CT and said I did have a kidney stone and THAT was what was causing my pain. I was pretty angry that they took out my gallbladder for no reason.

About three weeks later I developed reflux. I didn't even know what it was at the time because I'd never experienced it before. I had an endoscope done and the doctor said I had reflux now.

A year later I was diagnosed with Sjogren's disease, which I'd never shown symptoms of previously.

Issues after:

1. My biggest current concern is I feel awful all the time. Before my surgery I woke up with a ton of energy everyday. Now I feel like I've aged 20 years. I have no energy.

2. My mood/brain isn't right. I was always anxious before my surgery for my whole life. Now, that anxiety is completely gone. However, now I struggle with depression. I was never "down" before and I don't even feel like it's a mood thing. It feels like a health issue. I even feel changes in the way I think. I used to be pretty intelligent. I have a MS in psychology. I used to watch documentaries for fun and read medical journal articles on pub med just because I liked it. Now, my brain feels like it can't process fast enough. I can't understand things like I used to. I also was a writer in my spare time. I can no longer write. It's like my imagination is gone completely. My brain just isn't working like it did before.

3. My skin is orange. I used to be very pale with a pinkish undertone. Now, I look like I have bad self-tanner on all the time. My relatives and friends have commented on it. Nothing seems to make it better. I've ask my doctors and they say they have no clue. They've tested my liver function and said it's good. All my tests come back fine. Yet, my skin color is this awful orange. I considered adding photos to show everyone.

4. I have bile reflux I assume. After the removal I started getting reflux. I was diagnosed with gastritis. A bile binder seems to help with this. However, it doesn't fix the issue.

5. Adhesions- my stomach feels tight all the time. Like I have scar tissue there, so I assume it's adhesions. I'm not sure if this could be contributing to my other issues.

6. Weight gain - I have always been really active and have eaten a fairly healthy diet. Yet, I'm gaining weight. I've had to increase my exercise and I still struggle to keep it under control. This is absolutely horrible.

7. I suddenly developed allergies. I'd never had allergies a day in my life. The onset was within a month of getting my gallbladder out. Suddenly I was having all sorts of issues with my nose.

8. I've noticed changes in my hormones. I checked with my gyno and they say it's not menopause or any other issues. I was 36 when I got my gallbladder out and my period had been 100% reliable and normal my whole life. After, my period was suddenly lighter than it used to be. On top of that, I started having hotflashes. It happens just occasionally. I'd never experienced any of this before.

So, does anyone have any idea what could be wrong? Especially the mental issues and skin color?

My theory is that it has messed up my gut microbiome. Or maybe some sort of metabolic issue? To me, it feels like my body homeostasis is messed up.

I'm also VERY angry with doctors. First, I now know there is a HIDA scan to test gallbladder functionality. I asked about another test and they told me they didn't have one. Second, I ask about risk factors or possible complications after. I made it VERY clear I wanted to know everything to make an informed decision. Then I find out there is all sorts of issues that came up. I should have been made aware of these possibilities. I also feel railroaded into the surgery. I was scared because this was my first health issue I'd ever had. I had to go to the hospital by myself because of COVID. Then I was told I needed this surgery ASAP or my gallbladder could burst. At the time, I thought I would die if I didn't go through with it. Yet, later I find out it's an elective surgery and people can live years (or longer) with problematic gallbladders. I told the doctor and nurses I didn't really want this surgery and was upset.

Anyway, could anyone give me any tips or ideas on what to do? I feel awful every single day. I tried talking to a GI doctor around where I live. There is only one GI doctor in the area. He refuses to do anything except the endoscope. Basically he says that I could just take a PPI for the reflux. I tried that and it made me really sick. He wouldn't even prescribe a bile binder. I had to ask my GP. At least it really helped with the reflux. The GI doctor doesn't want to investigate why my skin is orange or why I'm feeling so bad. It worries me.

Any ideas/thoughts?

Hi Terri, welcome. Boy, you've got a lot going on. To help connect you with other members, like @empoulin @wisco50 @woodsiechris @astaingegerdm @lilmo and others, I moved your message about issues after cholecystectomy or gallbladder removal surgery to this existing discussion:
- Post-cholecystectomy or gallbladder removal surgery https://connect.mayoclinic.org/discussion/post-cholesectomy-gallbladder-removal-chronic-back-pain/

As you read through the previous posts, you'll see that you are not alone.

Terri, you mention that there is only one GI doctor in your area. Have you considered traveling to seek a second opinion at a large medical facility?

Thank you Colleen!

Well, I moved to Alabama a few years ago for a job and my insurance is based within my state. So my only large medical facility option is UAB in Birmingham. I did get a referral there and saw a GI doctor. However, it turns out that the GI doctor there was a student of the doctor I see locally. He said just backed up what my local doctor said. Basically, they think nothing is wrong with me and refuse to address any of my issues.

I paid for a special telephone appointment for a second opinion from a GI doctor at Cleveland Clinic. I used to live in that area and trust the physicians there. The GI doctor there said it sounds like postcholecystectomy syndrome and gave me a lists of tests that my local GI doctor should run. I took that list to my local GI doctor and he basically said it was nonsense and that I didn't need the tests.

So I am basically stuck until I move I guess. It concerns me because I feel really bad every day and I'm worried about damage to my body. My skin is orange and that makes me worry about my liver. So I just am at a loss.

My gallbladder was functioning at 8%, doctors said no stones were found. Had gallbladder removed 4 weeks ago. The pains are 10 times worse now than before it was out. It feels like my whole right side of stomach has been stabbed and the knives are wigging around inside constantly. Can not sleep for long because lower right back pain kicks in. Was told tylenol and ibruprofin mixed every 6 hours would help with pain(It does not). Now today doctor says to try omezeprole for 2 weeks. I am sure its not acid causing the problems but we shall see.

Most doctors just don’t want to be bothered if it involves anything other than what they want to hear. I hope your new meds help.

This is me too! Right side mostly by lower ribs and aches so much, worse with wind after a fizzy drink or too much chocolate.

Mines exactly the same as yours… mine thinks I need to get my bowls checked. 😬🤦🏻‍♀️

What doctor told you that, you GI?

I had both surgeries a month apart. Six inches of my colon was removed. Since then, I have only had one normal bowel movement. Prior to defecating, I had a lot of pain—like IBS or gas. I also have a rectal discharge that is viscous and orange. Am very concerned. Defecate smaller amounts several times a day sometimes.

I was sick with gallbladder pain and sickness from January until June this year. I had seen at least 12 different doctors. Finally a surgeon in a no name hospital in podunk VT knew what I had was hyperkenetic biliary dyskinesia. I stopped eating almost all foods in April. I lost over 30 pounds in 2 months. I am about 7 weeks post cholecystectomy. My pain started to be alleviated and I was able to start eating again for maybe about a week before I started feeling awful again. I'm back to not being able to eat anything and stabbing, gnawing pain in my right shoulder, right ribs/abdomen, under my sternum, now on the right side of my back. I am losing more weight again. I've seen almost all of the gastroenterologists in my area. Dartmouth is giving me such a hard time and will not help. I am waiting to hear from a 4th gastroenterologist that is an hour away from me to see when they can get me in to see me. I think the next step is an ERCP. I do not want to be on pain pills, or any pills for that matter if I can help it. I just want to be able to eat again. My quality of life is significantly diminished as well as my mental health at this point. I am very very very scared and just don't know what to do anymore.