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

Monday, May 31, 2021

Ostomy Reversal Anniversary - 20 Years

stomach scars from ostomy reversal
It's hard to believe it, but this is my 20th anniversary of my ostomy reversal!

I had my colon removed at age 9 due to Familial Adenomatous Polyposis. I was expected to have my ostomy reversed into a Jpouch a few months later. However, this is far from what would happen.

I suffered complications from my colon removal resulting in having an ileostomy for 6 years before it would be reversed. My small intestine wrapped around itself and my surrounding organs resulting in my Jpouch dying from lack of blood supply. I required emergency surgery to remove the dead small intestine and move my stoma from my left side to my right side. I would have 5 surgeries that year including one to start a Straight Pull Thru. However, my surgeon refused to complete the Straight Pull Thru reversal. 

I experienced a very difficult time trying to adjust to my ostomy. I hated myself, my body, and those around me who I felt I could blame my ostomy on - such as my parents and medical providers. It wasn't until high school when I entered counseling that I was able to start processing the medical trauma I had experienced and learn to cope with my PTSD, depression, and anger. It would still take another decade at least before I felt truly comfortable in my own skin and began to appreciate my body.

My 2 Stoma Scars and
7 vertical Surgery Scars
Six years after my first surgery, when I was in high school I found a surgeon willing to attempt
completing the Straight Pull Thru. I had longed for an ostomy reversal every day of those 6 years. It wasn't even considered an option until I told my GI specialist that I had been having the urge to have bowel movements in spite of having an ostomy. She explained that this urge was caused by mucus in my small intestine but because I had the urge to excrete it and was able to do so, perhaps a reversal would be possible after all.

Due to my Jpouch dying requiring part of my small intestine to be removed, I didn't have enough small intestine left to create another Jpouch. I would have to create my own reservoir in my small intestine. This was done over the span of a year of performing Kegel exercises while an inflated Foley catheter was inserted into my anal canal. This exercise would create my own reservoir and strengthen my sphincter muscles that hadn't truly been used since I was age 9. I had my heart set on a reversal so I faithfully completed these daily exercises.

My GI specialist and surgeon warned me that while the reversal would be attempted, there was no way to know if it would be successful or not. I may go through surgery only to wake up with my ileostomy being permanent. I didn't care though, I had to try for the reversal.

My parents agreed to give me a thumbs up or down sign as soon as I opened my eyes from the attempted reversal surgery so that I wouldn't have to wait to know how the surgery went. I refuse to talk when I have a NG tube inserted so I wouldn't be able to ask them the outcome. Fortunately, my parents gave me the thumbs up sign and I was able to relax and drift back into my medication induced sleep. 

Due to having 6 surgeries by this point, my adhesions started to create a stricture around my small intestine resulting in surgery the following year to remove adhesions. I wasn't sure if this 7th surgery would affect my ability to maintain my reversal or not. I fear of any future surgeries as well due to this risk. 

This was my second surgery to remove adhesions and each new surgery creates more adhesions. I now have chronic pain, nausea, and increased risk of intestinal blockages due to my adhesions. I fear that I will require another surgery in the future to once again remove adhesions and place my reversal in risk. Fortunately, my symptoms caused by my adhesions are not severe enough to require another surgery at this time. However, I continue to develop polyps in my duodenum that may require the Whipple procedure at some point.

My Scars In All Their Glory

A Straight Pull Thru and the extended length of time I had an ostomy both have affected my ostomy reversal in general. I have Short Bowel Syndrome resulting in 20+ bowel movements a day. I also often experience urgency with bowel movements that is worsened by not having a rectum and the amount of time my sphincter muscles weren't regularly used while I had an ostomy. In spite of these obstacles, I manage to function well most days and I'm able to participate in the majority of activities of my choice with the aid of anti-diarrhea medications when necessary. Due to my Short Bowel Syndrome, I do have flare ups causing me to require the restroom every minute or so and these flares can last for hours at a time even with anti-diarrhea medication. 

I try not to dwell on the possibilities of the future that may or may not occur and instead focus on enjoying the present status of my health. I remain amazed that my Straight Pull Thru has managed so well for me to reach 20 years. I hope for many more years with my reversal.

Wednesday, May 19, 2021

The Evolution of Myself with Chronic Illness

finding myself

When I look back on my life, I am drastically different now than how I was as a child and even how I was when I started Life's a Polyp in 2012. My views about myself - physical and emotional have greatly evolved over time to culminate in a wonderful sense of self-acceptance. This was not achieved by myself though. It was a painstaking process lasting a couple of decades with immense support of others - including yourself. 

As a child, I was painfully shy. I didn't talk to strangers and barely to those I did know but wasn't particularly close with. I didn't start to become social until I forced myself in 7th grade after experiencing bullying the year prior. My shyness was exacerbated by the surgeries I underwent when I was in 5th grade and by having an ostomy. I had no self-esteem and judged myself harshly for the appearance of my surgery ridden body. Truth be told, I hated myself, my body, and those I blamed for my health condition. Changing my social habits wasn't easy but I found it necessary for my emotional survival and so I pushed myself to expand past my comfort zone. 

From 7th grade onward, I acclimated to the new, more social self I created and haven't been without friends since. In high school, I was able to have my ostomy reversed. This improved my self-esteem and I was no longer ashamed of the physical appearance of my body. I still wasn't ready to share about my day to day symptoms, particularly my GI issues caused by my rare diseases - Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome

High School with My Central Line
My health became unstable after my ostomy reversal resulting in frequently missed days from school
due to illness and hospitalization. I became known around my school for being sick. I had a central line for TPN for about 6 months. My central line was prominently visible as my school allowed an altered dress code for me due to regular clothing causing pain and irritation of the skin around my central line. I even unabashedly showed off my scars. However, in spite of my social acceptance, it would still take several more years before I would have the confidence to share my medical story with others.

In 2012, I found a community page on Facebook for FAP and I interacted with others through this page. The administrator reached out to me and asked me to start a blog about living with FAP. I agreed and Life's a Polyp was born. However, I still was not ready to openly share my medical story so I created Life's a Polyp anonymously. I didn't share my identity at all until a reader from Michael's Mission contacted me about how to grow the impact of Life's a Polyp. With her prompting and encouragement, I finally revealed my identity to the world. She gave me the push I needed to no longer hide in shame of my medical experiences. Over time, I became more and more willing to become an open medical book. I became more open with friends and romantic partners not only regarding my medical past but also my current health issues and symptoms.

This push is what has helped Life's a Polyp expand from a blog to a Youtube channel, a Shop, and enter the world of social media. It has allowed me to have my medical story accepted for publishing in a book and the creation of my own children's book about FAP. 

I never would have guessed as that excruciatingly shy young girl that my life would become so public medically. That I would willingly tell others the intimate details of life with FAP and Short Bowel Syndrome. I never would have expected others to be interested in what I had to say or what I experience with these diseases. The readers of Life's a Polyp continue to provide me encouragement to continue my advocacy efforts. I'm not sure when I would have found such a deeper level of self-acceptance about my health conditions and my body if it wasn't for readers such as yourself. With the expansion of social media, I have found an online home amongst others with FAP in groups across various platforms. I never dreamt such acceptance by myself nor by others to be such a possibility. 

Our words have a profound impact on others and it can mean the difference between suffering alone and enduring together. If you're struggling with self-acceptance, don't give up hope. It doesn't typically occur over night but each day can mean progress. You are worthy of self-acceptance and love. May we all strive to help one another find self-acceptance.

Friday, April 9, 2021

How Reiki Affected My Mental Health

reiki meditation and mental health

My boyfriend, Mike, sent me to his massage therapist for a massage last year due to my stress causing shoulder and back pain. His massage therapist also does energy work, including Reiki. Out of curiosity, Mike also purchased me a Reiki session. I didn't have any knowledge or expectations about Reiki other than it was energy work with Chakras. I don't hold any beliefs toward energy work or Reiki but decided to go to the session with an open mind and figured at the very least, it would be relaxing.

Reiki is often referred to as energy healing, targeting the energy fields around the body. It was started in Japan in the late 1800's. Reiki involves transferring universal energy from the practitioner's hands to the client in order to improve the flow of energy around the body and remove energy blocks thereby allowing relaxation, speed healing, and reducing pain and other illness symptoms. 

I scheduled my Reiki session for Saturday, April 3rd in the mid-morning. Little did I know, this would be the perfect day for a Reiki session. I awoke that day early and started practicing for a speaking engagement I had next the day about my experiences with doctors dismissing my reports of pain as a child. For the last two months, I have also been writing my medical story to be published in a book and writing my own children's book about Familial Adenomatous Polyposis. I have been working on these projects related to my health and Life's a Polyp quite vigorously without allowing myself mental breaks. This particular morning, all of the reliving of my medical trauma became too much for me emotionally. I was crying and distraught this particular morning before my Reiki session. 

When I arrived for my Reiki session, I was instructed to lie on a table face up. The room was dimmed and relaxation music was playing. She wafted some scented oils into the air and over my body. She occasionally laid her hands on me, primarily my feet and shins. Throughout the session, she held her hands hovering over my body and moved them back and forth in various motions. At one time, she was moving her hands lightly over my arm and it felt as though something was being spread over my arm or stretching the skin of my arm. 

She checked the flow of my energy in each of the 7 Chakras with the use of a pendulum. She said my 6th Chakra, the Third Eye, was very strong and indicated that I am very intuitive. I noticed that the pendulum moved over this area more than it did any other area. I was unable to see her hand causing movement in the pendulum. She advised I had a block in my 3rd Chakra, the Solar Plexus. The pendulum did appear to move less over this Chakra than it did over the other six. This Chakra is in the upper abdomen and holds our self esteem and confidence. It is believed that blocks in this Chakra are often experienced through digestive issues, which embodies my diseases of Familial Adenomatous Polyposis and Short Bowel Syndrome. 

She told me that she felt I was hanging on to past regrets and not fully loving myself or allowing myself to fully feel emotions. She told me that I'm a very serious person, a teacher to others, and I don't allow myself to fully feel joy. She explained that my life's purpose is to teach and help others and particularly help others learn compassion and understanding. I agreed with this description of myself she provided.

She asked me why I limit my experiences of joy and I shared my extreme fears of losing my parents and my desire for them to outlive me. To remove this block, she instructed me to imagine a large sunflower over my abdomen and to push all the built up sludge from this area into her hands that she moved lightly over my abdomen and sides. She did this for a long period of time. I began to physically feel light and when I expressed this, she stopped. Then she told me to imagine my body suctioning a yellow, shimmering light from her hands to fill my body. After awhile, my stomach began to feel full and when I expressed this, she stopped. 

She spoke about the energy field that surrounds the body. She explained that those with amputations having not only physical phantom pain of their missing limbs but may also experience an energy phantom pain. I told her about my phantom sensations of the stoma I had on my right side for 6 years before having my ostomy reversed. She again used the pendulum and began to spin it rapidly above my body. I was instructed to imagine this vortex acting as a suction over my previous stoma site. After she did this for awhile, I noticed that I began to feel extremely relaxed. At this point, she stopped.  

The Reiki session lasted 2 hours and I found it to be extremely emotional. I cried often during the session while she told me what she sensed about me and asked me questions about my fears of outliving my parents. She told me that the work we had done during the session would help with my mental health. She also encouraged me to set aside a specific time frame a day to think about the negative, fearful thoughts I frequently have rather than thinking about them throughout the day. She suggested allowing this set time to be when I'm working on Life's a Polyp projects so that I may channel these thoughts and energy into something productive. I had no idea what to expect from this Reiki session but it was perfect timing to help me cope with my medical PTSD triggers.

I decided I would set boundaries for my negative and fearful thoughts, as she suggested, and resume daily meditation exercises. The rest of the day I remained melancholy but by the next morning, I awoke refreshed with a much happier disposition. 

Is there something to Reiki and energy work? I don't know, but I do know that I enjoyed my 1st Reiki session and I am in a much better place mentally since experiencing Reiki. Would I do it again? Sure, why not?

Tuesday, March 16, 2021

Vertigo and Physical Therapy

I started having chronic nausea in 2015 after my first hospitalization since 2007. My chronic nausea has persisted in spite of a mix of medications and Peppermint Oil. These treatments are helpful in managing my nausea but they do not cure it. A couple years ago, I started noticing visual triggers to my nausea and over time the number of visual triggers began to expand. Strobe lights and the movements of others or objects easily trigger my nausea. It was then that I was diagnosed with Vertigo that was worsening my nausea. I rarely felt dizzy but at times the room would spin and I felt unsafe to drive until the dizziness dissipated. A friend recommended physical therapy to me in an effort to help reduce the Vertigo and so my GI specialist sent me to a local physical therapy center.

Although the Vertigo was the primary focus of my physical therapy, my therapist also wanted to include core strength and range of motion for my neck as additional goals. My core remains weak after 7 abdominal surgeries and I have chronic neck pain with limited range of motion due to degeneration in my neck. My therapist explained that my limited movement had not only contributed to the development of Vertigo but was also worsening my symptoms.

A common cause of Vertigo is Benign Paroxysmal Positional Vertigo (BPPV) that occurs when tiny calcium particles become dislodged and enter the inner ear. My therapist explained that my limited head and neck movements were creating these particles and caused them to wrongfully enter my inner ear resulting in my dizziness and nausea. 

Not only does Vertigo cause dizziness and nausea but other symptoms may include balance issues, abnormal or jerking eye movements, headache, sweating, ringing of the ears or hearing loss.

The physical therapist completed an evaluation of my Vertigo symptoms and found that I also presented with the abnormal, jerking eye movements. The evaluation included a dizziness questionnaire and movements of my head to try to invoke nausea or dizziness. She would later use the technique to determine the presence of jerky eye movements to help determine the effectiveness of physical therapy on my Vertigo. My physical therapist also performed whole body movements on myself to help move the calcium particles in my inner ear into the correct locations. 

VOR Exercise
I completed 8 sessions of physical therapy before being released. I completed several different exercises to improve my balance which would also help reduce my Vertigo. I started with single leg stances on each leg. First, these were completed with my eyes open and then as I progressed it was changed to eyes open, moving my head in all four directions, and finally using a bosu ball. In addition to completing single leg stances on the bosu ball, I also had to turn the bosu ball upside down and complete squats on it. This was like doing squats on a see-saw. I also did an exercise called Vestibular Ocular Reflex (VOR) that is completed by keeping my eyes on a fixed object in front of my face and moving my head from left to right while maintaining my focus on the object. This exercise helps to recalibrate the eye, inner ear, and brain. The remainder of my exercises focused on core strengthening and on stretching my neck to improve my range of motion thereby reducing the development of these calcium particles and their risk of entering my inner ear.

After a month of physical therapy, my therapist felt as though I had reached the maximum level of benefit physical therapy could provide me and I should continue my exercises on my own at home indefinitely. I'm hesitant to say that my Vertigo is cured. However, I have noticed less use of my Vertigo medication and increased ability to tolerate visual triggers for longer periods after the completion of physical therapy. 

If you suffer from Vertigo, I would highly recommend requesting physical therapy as part of your treatment plan for the Vertigo. 

Wednesday, February 17, 2021

Understanding Dehydration

Dehydration occurs when more water is lost from the body than the amount of water that is taken in.

Dehydration is a common struggle for those of us who have required colon removal. Without the colon, water is not absorbed properly and typically results in liquid stools. Many of us without a colon are also diagnosed with Short Bowel Syndrome. SBS further worsens the absorption of nutrition and water due to damage to or significant removal of the small intestine resulting in frequent diarrhea. Some individuals with SBS require lifelong TPN in order to meet their nutrition needs.

I was diagnosed with Short Bowel Syndrome as a child after part of my small intestine died from surgical complications of my colon removal. My SBS causes me to have a minimum of 20 stools in a 24 hour period - more if I am having a flare up. During a SBS flare, it is common for me to use the restroom as frequently as every 2-5 minutes for several hours at a time.

It is common for those with an ileostomy or Short Bowel Syndrome to experience stools soon after ingesting liquid further complicating our ability to take in adequate amounts of water.

Later, when I was in high school, it was discovered that I had a hole in my small intestine. As a result, I was placed on an NPO diet and started on TPN for my nutritional/hydration needs. I became accustomed to not drinking fluids due to the NPO diet while my intestine's hole was healing. I began to only drink fluid when I felt thirsty, which wasn't often. As an adult, I started being followed by a nephrologist a few years ago due to the discovery of cysts on my kidneys. While this could mean that I have Polycystic Kidney Disease, my nephrologist thinks it may just be due to years of dehydration. This has prompted me to truly make an effort at achieving and maintaining a state of hydration. In spite of my efforts of at times drinking 100+ ounces of water a day, my nephrologist states I remain in a dehydrated state.

For those with colon cancer causing conditions such as Familial Adenomatous Polyposis or Lynch Syndrome may also experience dehydration worsened by cancer treatments. Chemotherapy and radiation treatments may cause side effects including diarrhea, vomiting, and excessive urination that may result in dehydration. 

My Nephrologist advised me that becoming hydrated requires several days - nearly a week - of continuous increased fluid intake for the body to fully become hydrated. One or two days of drinking well isn't going to be enough.

What are the signs of dehydration?

Common signs of dehydration include:

  • Headache
  • Dizziness or lightheadedness
  • Fatigue
  • Decreased urination
  • Dark yellow/amber colored urine
  • Decreased skin elasticity 
  • Dry mouth and mucous membranes (such as lips, gums, nostrils)
  • Muscle weakness
Severe signs of dehydration include:
  • Low blood pressure
  • Lack of perspiration
  • Sunken eyes
  • Increased heart rate
  • Fever
  • Delirium
  • Unconsciousness

Risks of Dehydration

If dehydration is severe and not rectified, an individual may experience:
  • Hypovolemic Shock - a reduction in blood volume that drops the blood pressure and amount of oxygen in the body. 
  • Increased risk to heart and cardiovascular system - blood volume decreases cause the heart to work harder and faster which increases blood pressure and heart rate. Sodium is also increased in the blood from dehydration resulting in blood thickening that over works the heart. 
  • Seizures due to electrolyte imbalance
  • Kidney issues such as kidney stones, UTIs, or even kidney failure. Water helps to remove toxins in the blood via urination. Dehydration can result in the build up of toxins and acids in the body.
  • Heat injury - ranging from mild cramps, heat exhaustion, heat stroke
  • Coma, Organ failure, and death may result from untreated dehydration

Diagnosing Dehydration

Several physical factors may be examined in addition to laboratory tests to identify common electrolyte changes associated with dehydration may be utilized for diagnosis. This may include:
  • Mental status exam
  • Vital signs
  • Temperature
  • Skin and mouth examination
  • Blood tests and urinalysis
  • Infants may also be examined for a sunken, soft spot on the skull, sucking mechanism, and loss of sweat and muscle tone

Treating and Preventing Dehydration

The U.S. National Academies of Science, Engineering and Medicine recommend men to drink 15.5 cups and women to drink 11.5 cups of water a day. It's recommended to limit or avoid caffeinated drinks.

An individual may need to adjust their daily water intake due to exercising, environment, overall health, and if they are pregnant or breastfeeding. 

IV fluids may be required for severe or recurring dehydration. This is common for those with malabsorption issues. 

There are several hydration products available to help prevent dehydration. Simply search for hydration drinks. Compare the amount of electrolytes and sugar in a drink when shopping. Some hydration products include:

Saturday, January 30, 2021

Continent Ileostomies

ostomy bag

If you're like me, you haven't heard a lot about different ostomy options for colon removal. Individuals frequently hear about the typical ostomy option - the ileostomy (even though many incorrectly refer to ileostomies as colostomies thinking colostomy is the general term for an ostomy). The conventional ileostomy has an external stoma with a wafer and pouch system and involuntarily releases gas and feces into the pouching system worn over the stoma. However, there is another kind of ileostomy called a continent ileostomy that is created internally allowing for gas and feces to be eliminated by inserting a catheter through a stoma into an internal pouch or reservoir that collects gas and feces.

The continent ileostomy is created from the end of the small intestine and another segment of intestine that is telescoped into itself that creates a nipple valve. The stoma created for a continent ileostomy is flush with the skin whereas a conventional ileostomy stoma protrudes from the skin. A small covering is recommended to be worn over the continent ileostomy stoma to absorb mucus from the intestine. The nipple valve is self sealing to prevent gas or feces from exiting the stoma involuntarily. 

The first continent ileostomy was devised by Dr. Koch known as a Koch Pouch, sometimes spelled Kock or referred to as a K-Pouch. The technique was later revised by Dr. Barnett and is known as a BCIR - Barnett Continent Intestinal Reservoir.

The Koch Pouch has an increased risk of a fistula developing due to a triangulated suture line. A fistula can occur due to breakdown in the internal pouch wall that allows waste to leak out that occurs until an abscess on the surface of the skin appears. The BCIR reduces the risk of a fistula developing due to a lateral internal pouch design that has a single longitudinal suture line.

The BCIR changes the direction of the nipple valve in comparison to how it is with a Koch Pouch. This change in direction allows for the muscle contractions to direct waste and mucus toward the internal pouch rather than the stoma. An intestinal collar is also created by the BCIR that tightens as the pouch fills with waste. This collar tightening helps to prevent the nipple valve from slipping.

According to WebMD, following the creation of the continent ileostomy, an indwelling catheter will stay inserted into the internal pouch to allow for continuous draining for 3-4 weeks. The catheter will need to be irrigated several times a day as well with an ounce of water. Once the internal pouch heals and matures, the pouch will need to be drained several times per day. Without draining, the pouch will fill and risk tearing or the nipple valve slipping or leaking. 

Draining the internal pouch can be accomplished by relaxing the abdominal muscles before lubricating the catheter and inserting it through the stoma to the preset mark on the catheter. Once continuous drainage use has been discontinued, it is recommended to drain the internal pouch every 2 hours during the day, upon awakening in the morning and before going to bed. It is recommended not to eat or drink within 2 hours of bedtime and the catheter can be set to constant drainage during the night. Over time, the time in between internal pouch drains can be lengthened resulting in the ability to drain the pouch 4 to 6 times a day and irrigated twice a day. It is also recommended to drain the internal pouch anytime feeling full or bloated and before exercising or going to bed. 

A conventional ileostomy and a continent ileostomy both are life saving and allow an individual to continue living with minor adjustments to activities. An ostomy of any kind does not have to limit an individual's lifestyle and can allow for increased quality of life. If you are facing surgery to remove your colon for any reason, a continent ileostomy may be another option for you to discuss with your doctor.