Monday, November 8, 2021

The Continued Mystery of My Post-Surgical Chronic Pain

chronic pain

I was hoping my health would have improved after experiencing chronic pain complications after returning to work following my 8th surgery; but alas, there has been none. 

Where I've Been Having Chronic Pain since 9/13/21
Not only has my pain continued throughout the majority of my torso, since 9/28/21 my incisions have
started feeling as though they are ripping from the inside out whenever my abdominal muscles are strained or stretched in the least bit. 

I returned to the surgeon on 10/6/21 and he decided to order another CT scan without contrast as my pain hadn't improved. My latest CT scan on 10/14/21 revealed a small hiatal hernia and everything else remained the same. I was distraught upon reading these results. I fully expected to require additional surgery in my lifetime but I didn't expect the possibility of another surgery so soon. I contacted the surgeon's office asking to speak to him about the CT results as I was very upset. He contacted me via phone that afternoon and the information I was provided was even further upsetting to me. I had been crying nearly non-stop after reading my CT results and was actively crying when he called me. The surgeon told me that he believed:

  • My hernia wasn't causing or contributing to my pain even the upper stomach pain
  • My pain isn't new
  • I've had this hernia all along
  • He was releasing me to my GI and PCP as he has nothing to offer me or idea what is causing my pain
I wasn't fully processing the information he stated and only managed to repeat the exact things he said but in a question form. To this, he simply repeated the same information without any elaboration of his conclusions or advice for going forward. Afterwards, I realized that the information he stated didn't make sense. The more I thought about it, the more I became enraged. The next day, I left a voicemail for his office explaining that I was confused by his statements for the following reasons:
  • Upper stomach pain can be a pain symptom of hiatal hernia
  • The pains I've been reporting since 9/13/21 are new, I didn't have them before surgery and the issues I was having prior to surgery, I'm no longer having
  • I have had multiple, repeated testing that includes the ones used to diagnose a hiatal hernia and none of those tests ever showed a hiatal hernia until this one
His Medical Assistant called me back and stated "He told me that none of this changes anything, he has nothing surgically to offer you but if you want to see him in the office to discuss it, you can". 
This further enraged me as I felt my trust in this doctor had been betrayed, my concerns and questions dismissed, and I felt frankly abandoned. I thought he understood my medical complexity and that my body has never followed the medical textbook explanations for anything. I felt he had indicated he would follow through with trying to identify the issues I've been having since surgery and now, he was giving up on me. Furthermore, why should I pay this surgeon a copay to finally get answers to the questions I posed when he should have explained his conclusions when he was on the phone with me the day before especially when I'm going to have to pay a copay to consult with my GI and PCP anyway. I figured, I might as well obtain a second opinion from another surgeon, pay that person my copay, and have all my questions answered in one. And, at this point, with confidence and trust lost in this surgeon, I wouldn't feel able to fully believe anything he says going forward.

I immediately followed up with my PCP, GI, and sought a second opinion from another surgeon.
My PCP advised she didn't believe my hernia was causing my pain due to the large scale of my pain not being consistent with symptoms of hiatal hernias. Instead, she thought my pain may be caused by gassiness from my probiotic or esophageal spasms. She advised to stop my probiotic for 1-2 months to determine if my pain would improve. I had stopped taking my Bentyl after surgery as I no longer have been having the abdominal pain it was controlling but resumed the Bentyl as it may help with esophageal spasms. I have not noticed any improvements to my pain with either of these medication changes thus far.

My GI ordered lab and stool tests as the surgeon hadn't checked my blood tests again after my pain started, only before my pain started. Tests showed that my liver and pancreas enzymes are high, white cell blood count low, and there continues to be blood in my stool and the calprotectin levels measuring inflammation in the GI doubled since 8/3/21 - from 58 to 117. Both of these levels remain in the borderline range, however, 120 is the threshold for elevated. He also ordered an abdominal ultrasound, however, no issues were identified by the ultrasound. He suggested the new pain may be due to adhesions. Although, I don't understand why abdominal adhesions would cause pain everywhere other than the abdomen especially considering I just had adhesions removal and the adhesion pain I had prior to this, has stopped. He started me on Carafate for possible Bile Gastritis and I will see him in the office for a follow up on 12/2/21. I remain in regular contact with him and his office though, so he may order additional tests in the meantime.

My Nephrologist advised she believes my torso pain is caused by dehydration and my high liver enzymes are likely due to my medications. Neither of these suggestions make sense to me and my GI reviewed my medications following my test results for possible contraindications with the liver and found none. 

I also scheduled with another surgeon. I obtained the images of my 3 CT scans from this year for him to review and I brought all my paper medical records I have for him as well. The moment I stepped into his office building, I began to cry and continued to do so until he met with me. This was due to my high level of fear and mistrust in new medical providers due to my medical trauma. I felt confident in him prior to our meeting as his reputation as a surgeon is well known and a friend is his patient for hernia repair as well. He spent an hour reviewing my records and talking with me. While he agreed that I am a complicated medical case he explained to me that:
  • He isn't convinced I even have a hernia. If I do have a hiatal hernia, it is "tiny". 
  • He doesn't believe my possible hiatal hernia is causing me any issues
  • He doesn't recommend surgery at this time as he doesn't believe it would benefit me and would only worsen my health issues
  • He believes I have recovered well from the surgery itself and my incision pain is likely due to adhesions. My abdomen is also not likely to ever feel "normal" due to all the surgeries I've required so the abdomen issues I'm having are likely to be my normal. (Honestly, I figured as much so I wasn't surprised)
  • He doesn't know what is causing my pain and believes my other doctors are "throwing darts" but recommends scopes if gastritis is suspected and to have a Bravo pH test done at the same time to measure my stomach acid 
With my 2nd opinion complete, I feel comfortable in trusting that my possible hernia isn't the issue and I can now relax about the hernia. I don't believe my probiotic or dehydration is the culprit. I don't believe I'm having esophageal spasms and perhaps it is bile gastritis but not convinced there either. Honestly, I'm hoping the Carafate isn't effective as I don't want to take this medicine for the remainder of my life. 

I'm required to take the Carafate 1 hour before meals or 2 hours after meals or I will have an intestinal blockage, which I am already prone to due to adhesions. I typically only eat 1 meal a day in the evening and it is usually only when I'm with Mike for dinner 4-6 times a week. Without him, it's debatable if I will eat anything for the day. When I do eat outside of my daily meal, it is typically a very small snack and often it is late in the day. Therefore, timing when I can safely take the Carafate has been a nightmare. I also am beginning to think the Carafate may be causing me to feel worse. I've noticed I've started feeling feverish (even though I don't have a fever), nauseated, sick to my stomach, symptoms of low blood sugar, and the like sometimes within 30 minutes of taking it. 

I continue to have pain from pressure placed on my abdomen including from clothes or bending. A physical abdominal exam causes severe, post surgery like pain for 1.5-2 days after the exam. I haven't noticed any improvements to my torso pain since it began in mid September, but I do believe I am starting to tolerate it better most days. I suppose that's something. Unfortunately, OTC pain medications are no longer dulling the pain and having my muscles massaged causes intolerable pain. I don't want to start taking prescription strength pain medications for multiple reasons either. At this time, I just hope the pain will improve over time or I will continue to at least improve in my toleration.

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. 

Wednesday, August 4, 2021

When One Thing Becomes Many

medical test questions

I undergo an upper and lower GI scope every two years presently due to my Familial Adenomatous Polyposis. My FAP polyp growth is slow enough at this time to not require more frequent screening. 

I continue to have a carpeted stomach of fundic gland polyps and recurring duodenal FAP polyps - typically just one or two of them. However, this year I asked my GI specialist one medical question in particular for this year's scopes - can he determine what is causing me to have needle like pain in my intestine, near my ostomy reversal connection site. 

My GI specialist was unable to determine any cause for this pain during my lower GI scope and ordered a CT scan for further evaluation. My last CT scan had been in 2017 so he figured another one was due anyway. This CT scan spawned a battery of tests to follow.

My CT Scan this year discovered:

  • My enlarged liver grew another 2 cm
  • My enlarged pancreas returned to normal size
  • My normal sized right ovary doubled in size and now has multiple cysts including one measuring 6.4 cm cyst 
  • I continue to have sub centimeter cysts on both kidneys
  • I now have innumerable gall stones that have also increased in size
These results led to:
  • Surgical consult for removal of gall bladder
  • Recommendation for liver biopsy
  • Pelvic ultrasounds
My GI specialist advised my needle like pain may be due to my adhesions. He referred me to a surgeon to discuss gall bladder removal due to my innumerable gall stones and recommended for me to have a liver biopsy during the surgery. He stated my gall stones may be contributing to my chronic nausea.

My Nephrologist was pleased that my renal cysts remain less than a centimeter and didn't require my annual kidney/bladder ultrasound this year due to having the CT scan. She also was in agreement with my GI specialist recommending gall bladder removal stating that I am essentially living without a gall bladder presently, it's just still in my body. 

My gynecologist ordered pelvic ultrasounds and determined she wasn't overly concerned about my ovarian cysts and recommended pelvic ultrasounds to be performed in another year to monitor the larger cyst. My ovarian cysts were classified as simple cysts which are common for women to develop during the menstrual cycle and are often symptomless. Ovarian cysts often cause the ovary to become enlarged and ovary size also changes throughout the month during the menstrual cycle. It is common for ovarian cysts to develop and go away on their own. She did not think the enlarged ovary was contributing to my GI symptoms.

My surgical consult is scheduled for the middle of this month and I have also requested another appointment with my GI specialist to further discuss my concerns and questions about having my gall bladder removed. I have accepted that my gall bladder will require removal at some point, however, I still have questions and concerns I want to discuss. I've also decided that whenever I do decide to have my gall bladder removed, I am going to have at least a week of celebrating greasy foods before the surgery.

Thursday, July 22, 2021

Finding My Person

This year I turned 36 and I received an unexpected surprise to celebrate my birthday.

I previously shared how birthdays turned from once an enjoyable experience to one of emotional devastation along with other milestone holidays. 

When I turned 35 last year, it was my first birthday to celebrate with my boyfriend, Mike. It remained a difficult day for me but Mike and my coworkers did their best to help me celebrate. However, it was the best birthday I had experienced since 2015 when a close friend of mine came to visit from out of state and took me on a full day birthday celebration. I learned that my birthday could be a day to look forward to with Mike. 

This year's birthday was even better. Not only did I not feel alone but I also wasn't consumed by my usual emotional turmoil surrounding milestones. I attribute part of this to the unanticipated healing experience I encountered through a Reiki session in April. I've noticed since this Reiki session that I have significantly reduced the frequency of time I fixate on my life expectancy and my fear of losing my parents. This reduction was helpful to allow me to focus on celebrating my birthday rather than focusing on negative and fearful thoughts. 

After my divorce, my views on relationships and marriage greatly changed. I never expected to allow myself to feel deeply for another person again after my divorce. I unexpectedly found a great love again after my divorce that would end after a year together. While this break up was a painful experience, it taught me that I could indeed love deeply once again. With this knowledge tucked away, I remained open to finding love again in the future although I didn't let relationships overly worry me.

Me and Mike

I happened across meeting Mike through a dating app and didn't expect much of anything to occur. He seemed nice and a week after our first date, he started asking to see me a couple of times a week. I encountered a few emotionally difficult incidents which were complicated by the sudden departure in my life by a couple individuals who I had thought cared for me. Mike, however, stood by me and was extremely supportive. Within a month, we decided to become exclusive and we found ourselves falling in love with one another. He soon began to collaborate with me on Life's a Polyp by creating designs for Life's a Polyp Shop and brainstorming ideas with me. His son even inspired two characters that are featured in my children's book about Familial Adenomatous Polyposis that is being published in 2022: Life’s a Polyp with Zeke and Katie

Before I knew it, our relationship reached our one year anniversary and we were talking about spending our lives together. I am opposed to marriage and Mike is indifferent to the idea of marriage. We agreed we would some day exchange commitment rings when we were ready to commit our lives to one another but we would not seek legal marriage.

To celebrate my birthday this year, Mike surprised me with a commitment ring. So, of course, I provided him a ring in return. 

I'm thrilled to share that I found my person!

3 rings
Our 3 Rings Together

When we shared with Mike's son about our commitment rings, he asked for one of his own too!

Wednesday, June 16, 2021

Turning age 95 with Familial Adenomatous Polyposis

95th birthday celebration

Carleton Myers turns 95 this June. He has Familial Adenomatous Polyposis and has had an ostomy since about 1948. He has seen a lot in his years and a lot of changes in the management of this rare disease and ostomies. 

Carleton's mother likely had FAP as she died from colon cancer in 1928 at the age of 28. She was adopted so there is no further family history of his mother available. His father lived to be nearly 105 with no history of colon cancer or FAP. Carleton's only sibling, Elmer, was first diagnosed with colon cancer and FAP and Elmer's first son also had FAP and died in his mid 30s. Carleton and his wife, Sheila, 91, have 5 sons who have all tested positive for FAP. Two of their grandchildren also tested positive for FAP.

This is an interview with Carleton conducted by his son, Kevin.

    What were things like when you were growing up with FAP?

    I managed it very well; it was right before I went into the service. I didn't have too much trouble then; it was after that when trouble started. When I learned we could have an operation to take the large intestine out completely, I did that, and it was successful.

    When did you first find out that the operation could be done?

    It would have been probably around 1948. That's when I knew what had to be done because my brother (Elmer) had it done in the early 1940s. He was out in the South Pacific and they sent him back because of it. He had a lot of trouble and hospitals. He managed to survive it. He died when he was 42. Other problems that this brought on, I guess. He had a lot of trouble before it. I didn't, I was fortunate enough to be younger than him and they were learning more and more about it and what they had to do and that saved me.

    How did you find out about Henry Ford Hospital and Dr. Block?

    I went there when Elmer found out that he had cancer. In two months, I went in and had the whole rectum system out because that's where it started growing in my brother. Because he had his intestine out before me. I didn't know which way, but I had good doctors. Just as soon as we found out that my brother had cancer, I had everything taken out.

    You never expected to live into adulthood when you were a teen, is that right?

    I was hopeful about getting into my 40s. That's what I was shooting for, that I could get that far. I got that far, and I kept going. What they did to me originally was taking all of the polyps that were left after they took out most of my large intestine, they left about 6 inches and the rectum. I had to go in many times to get polyps removed. Once Elmer found out he had cancer, I went immediately and found a doctor and had the rectum taken out - it was about three months after that. All of you (my children) were look at in your teens.

    Do you have any recommendations for anyone now that has FAP?

    I don't know what the doctors are doing now. I was just so glad to be living.

    What was it like knowing about FAP?

    Sheila - Scary. I knew it was going to be a battle.

    Carleton - My brother wrote me a letter right away and I immediately got a doctor to do it. My brother raised me because my mother was dead so didn't have much choice. 

Myers Family
Carleton and Sheila in the middle
Their son, Kent, and his wife at top left
Their son, Keith, below Kent on left
Their son, Kevin and wife next to Keith
Their son Kory on bottom left
Their son Kurt on bottom right

Carlton and Sheila at their 75 Wedding Anniversary
Carleton and Sheila 
75th Wedding Anniversary
Carleton passed away at age 96 on 10/16/2022 after viewing the Autumn leaves changing with his son, Kevin, and daughter in law. By all accounts, he died peacefully.

Carleton had an ileostomy and in recent years had surgery for an urostomy as well. He had Diabetes and some difficulty walking without mobility aids but in general was doing well with only rare intestinal blockages and maintained a well intact memory until Sheila's death in June 2022 - afterwards his health began to decline rapidly, per his son, Kevin. 

Michigan started a Familial Adenomatous Polyposis Awareness Week each year during the week of June 16 to honor him. Find out how to help further honor Carelton's legacy and FAP/AFAP patients where you live with the FAP/AFAP Awareness Week Proclamation


Updated 10/20/2022