Monday, September 27, 2021

The Unexpected After Surgery


When my CT scan showed gall stones in 2017, I expected I would require surgery to remove my gall bladder at some point. I didn't have a time frame in mind for this so I didn't quite expect it to be required by 2021 but within this time frame my many small gall stones changed into innumerable medium sized gall stones. My GI specialist theorized that my gall bladder was worsening my symptoms of chronic nausea and abdominal pain and it was time for removal. It was after receiving this news that I started to have increased pain, bloating, early fullness, and loss of appetite including difficulty eating solid foods - again contributed to my gall bladder. 

My doctors agreed that it was time to remove my gall bladder and my GI specialist and surgeon urged for sooner rather than later. My main concern was increased diarrhea without a gall bladder as I already have Short Bowel Syndrome and had 20+ stools a day. 

My GI specialist warned me of the risks if I decided to delay removing my gall bladder:

  • Gall stones dislodging and blocking a duct and gall stone attacks which could require emergency surgery
  • Inflammation and infection
  • Gall bladder fusing to the liver which would further complicate surgery
  • Gall bladder cancer
I also discussed bile salt supplements with my GI specialist as I had researched them as a possible treatment to improve digestion and reduce diarrhea after gall bladder removal. My GI specialist advised that I would likely not require bile salt supplements and to revisit this as a possible treatment if needed in the future. He stated that bile salt supplements allow the liver to become "lazy" by doing the liver's job for it of releasing bile salts and that the liver will likely function well on its own without assistance. My body was already functioning as though it didn't have a gall bladder so he, and my other doctors, suspected little changes to my bowel habits with the gall bladder being removed. This would also mean that I wouldn't likely start becoming deficient on Vitamins A, E, and K although my GI specialist approved if I chose to start taking these over the counter vitamins. I am already deficient of Vitamin D and presently prescribed Vitamin D3 by my nephrologist. 

Originally, I thought I would delay this surgery until January 2022 so that I would be able to use my Flexible Spending Account (FSA) for the cost. I had already used all of my FSA funds for the year and would be able to delegate the full amount to be contributed for the 2022 year if I waited. My symptoms continued to become more bothersome though so I thought I would schedule surgery for the end of September. Ultimately, I decided I didn't want to wait if possible and was able to schedule the surgery for two weeks after my surgical consult - August 26. 

Due to my medical PTSD and mistrust of medical providers, I was extremely nervous about electing a surgeon. My GI specialist provided me a list of possible surgeons to choose from. Between my familiarity with a couple of the surgeons due to working in the medical field and researching the possible surgeons, I made my selection and I feel that I made the correct choice. He has been extremely attentive to my concerns and my PTSD. 

My surgeon advised that he would attempt laparoscopic surgery to remove my gall bladder but due to the extent of my adhesions from my previous 7 surgeries, I would likely require an open surgery. He stated while gall bladder surgery is typically an outpatient surgery, he wanted to keep me overnight to monitor me even if he was able to complete the surgery laparoscopically - partly due to my medical complexity but also to monitor my pain control as I advised him that morphine is not an effective pain medication for me. In high school, my post surgical pain was controlled by Demerol, however, this is not a standard pain medication preference by doctors and we were uncertain how I would respond to other pain medications. If the surgery would be open, I would require a 3-5 day admission. 

We planned for an open surgery while hoping for the best outcome of it being laparoscopic. Due to increased Covid19 cases and hospitalizations, I was only allowed one person with me at the hospital so my boyfriend, Mike, went with me.

The surgery went better than expected and my surgeon was able to complete the surgery laparoscopically. He created 5 incisions across my abdomen - 2 on each side of my belly and one along my midline. He removed my gall bladder, a small mass on my liver, and another section of my liver for biopsy due to my liver becoming increasingly enlarged - resulting in 3 biopsies. While he provided me the option to stay over night following surgery, we ultimately decided for me to return home that day.

A few of my gall stones

The pathology results showed that my gall bladder had FAP polyps with dysplasia without malignancy - meaning my gall bladder was precancerous. I knew that FAP polyps could develop anywhere in the GI tract resulting in additional GI cancers outside of the colon but I didn't realize that included the gall bladder. The FAP polyps in my gall bladder hadn't been detected prior to removing the gall bladder so I was fortunate it was removed when it was as gall bladder cancer is difficult to treat. 

The mass on my liver was scarring and my liver biopsies were negative for any other issues. My surgeon recommended yearly imaging to monitor my liver due to the enlargement and scarring - which my GI specialist had already planned for follow up imaging in 6 months.

Following surgery, I suffered from lack of appetite and thirst resulting in dehydration. This further decreased my strength and energy levels and also caused my blood pressure to drop risking falls and fainting. I also experienced, numbness in my face, chest and under my ribs - particularly while using this restroom. This was concerning to my surgeon which prompted an office visit within a week of my surgery rather than two weeks afterwards. He ordered blood work that showed elevated liver enzymes and therefore ordered a CT scan. The CT scan results were unremarkable. He stated my elevated liver enzymes could be caused by surgery and ordered repeat blood work for the week after along with my 2 week post op office visit. I was able to discontinue my pain medication within 3 days post surgery and these symptoms have since subsided. However, I also periodically experienced such an intense heart beat that I could physically see and feel my stomach and chest moving with each pulse. It lasted for at least an hour each episode and it caused me to feel fatigued and the constant jarring is upsetting to my stomach. My doctors haven't been concerned about it and if it were an abdominal aorta aneurysm, it should have been detected on the CT scan. This intensely pulsating heart beat in my abdomen finally stopped occurring about 3 weeks after surgery.

Another concerning symptom following surgery for me has been a change in bowel habits. Prior to surgery, I had 20+ stools a day and while this number hasn't specifically changed post op - I was unable to feel as though I fully voided my intestine when using the restroom for about 3 weeks after surgery. I have also experienced significantly increased gassiness since surgery even with medication such as Gas-X. About half of my restroom trips are due to the gassiness rather than the actual need to use the restroom. My appetite remains suppressed which has allowed me to lose weight that I've been trying to lose for the past few years. I become full rather quickly and I haven't truly felt hungry since surgery. Rather, I eat something because the taste of a certain food will sound appealing not because I'm actually hungry. I have been eating one meal a day typically and on occasion I will have a snack. Surprisingly, I have been able to tolerate every food I've eaten post surgery including greasy foods. Various foods haven't increased my urgency to use the restroom or my abdominal pain. I am no longer having nausea and have been able to discontinue to medications to reduce chronic nausea and abdominal pain when eating. The chronic nausea and increased abdominal pains that I started having in 2015 were thought to be caused by my increased adhesions. However, I am left to wonder if these symptoms were not brought upon by gall stones entirely or at least partially. Additionally, my surgeon was required to remove adhesions in order to remove my gall bladder so the combination of removal of adhesions and gall bladder would have helped to address both of these issues. 

I returned to work 2.5 weeks after surgery as I felt comfortable enough to do so. However, after returning to work I started having new pains. My incisions hurt periodically and I have near constant pain under my ribs, on the sides of my torso, and up my back. The severity of this pain has varied and I've required resting in bed and Tylenol or Ibuprofen to help manage the pain. I've also required taking time off work each week in order to recover so that I may continue working the rest of the week. My surgeon is concerned by these new pains, especially as they have continued at a month after surgery. He and I both believe the new pains are a result of increased activity since returning to work and these pains were likely unavoidable. Since he ordered a CT scan one week after surgery that was unremarkable, he is waiting to repeat the CT scan or order additional testing. If my pain continues to worsen or doesn't improve by my next follow up appointment, he may decide to order more testing. 

I also met with my GI doctor for follow up post surgery and he explained that my liver was shown to return to normal size after my surgery. He further explained that my gall bladder was causing chronic inflammation and likely a chronic low grade infection resulting in my liver becoming enlarged. He agreed to complete a liver ultrasound in a year to continue monitoring my liver due to the scarring found on it during surgery. 

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