Post Concussion Syndrome

This has been a story in the making for over a year now. I am now released from worker's compensation and feel able to share my story with Post Concussion Syndrome (PCS).

In 2015, I fell at work and hit my head due to my blood pressure bottoming out. I didn't have a concussion from that fall, and it wouldn't be until 2022 that I would come to understand how so many of my health changes stemmed from that single fall that caused me to develop Abdominal Migraine.

In early February 2023 I fell on the ice at work injuring my head and my right knee. I didn't even land on my knee but yet I twisted it in the process. At first, I didn't think anything about it really. I immediately hurt from my fall, as I would expect. I called my neurologist's office to let them know I had hit my head so that they were aware and that I was feeling alright except for the expected pain from a fall. However, within a few hours, things started to change. I started having pressure in my head, headache, my concentration and speech were off, I felt funny. There was such a remarkable difference in my speech alone that when I called my neurologist's office back, I was told that I definitely needed to go the ER for evaluation.

My mom took me to a small, local ER. In spite of being there for concussion symptoms, the ER doctor was only concerned if I was vomiting and if I had hurt my knee and neck. He ordered a knee x-ray and a neck CT scan - both were unremarkable. He said I scored a 15 on some scale (which was really good evidently), I wasn't vomiting, and I had hit the back of my head so he wasn't concerned about a severe concussion and therefore he wouldn't order any imaging of my head. I didn't realize until after I was released that I don't think he asked me if I was having any other symptoms other than pain and vomiting. The only reason that the ER doctor explained why he wasn't worried about a severe concussion and would even use the word "concussion" with me was because I kept asking every staff member that came into my room why I wasn't having any imaging tests of my head. Word got back to the doctor, and he decided then to say anything about a concussion to me. Even then, he would only say "you might have a mild concussion". Might my ass. And the only instructions I was given were by the nurse who warned me about increased symptoms if my heart rate increased over the next couple weeks and to take Tylenol or Ibuprofen. A day or two later, I realized that I hadn't advocated for myself at all like I normally would, and this wouldn't be the last time either when dealing with my concussion, unfortunately. 

To say that I have been completely confused and scared, unlike myself in so many ways, is an understatement. A friend told me to not look at any screens and to follow up with my PCP. I told her about it and asked about any precautions/restrictions I needed to take. The only thing I was told was to limit screens. 

The night of my fall, my entire body hurt - every single joint and major muscle group was flared. I hurt almost as badly as did following my gallbladder removal surgery when my nerve pain kept me bedbound for 4 months except for the time I went to work. Four days later and looking at screens still triggered or increased my headaches. Since my injury occurred while at work, I was followed by worker's comp and bound to their rules and recommendations. With my symptoms no better after the 4 days the ER doctor wrote for me to be off work, I was directed to 3-4 different nurse practitioners to manage my care at an urgent care contracted with my worker's comp. I wasn't assigned to one nurse practitioner, so I never knew who was going to be the one to manage my care that week when I would return for each follow up visit. The time I was allowed and restricted from screens changed every week. But by my 2nd visit back, there was concern about my knee that I twisted in my fall and was referred to physical therapy. There the physical therapist told me I likely had an injury to my outer meniscus and was allotted 6 sessions of physical therapy to strengthen it as it healed. 

In the meantime, I was still experiencing headaches, memory loss, loud noises bothering me, excessive crying at sometimes nothing at all and other times if I was overwhelmed in the slightest, misreading signals so I thought everyone was mad at me with absolutely no evidence, numbness, difficulty concentrating and forming sentences when my headaches were really bad. I differentiate between how noises bother me - usually when a noise bothers someone it hurts their ears but for me, noise hurts my brain. One day, I had the worst headache I've ever had in my entire life. My entire head hurt immensely and every few seconds it felt as though I was being forcefully struck on the top of my head repeatedly for about an hour. It took Tylenol 45 minutes to start to lessen the pain. I struggled with my short-term memory for a long time, and it was very upsetting to me. I couldn't remember things like where I had found a coffee I liked. One week, I bought a to-go drink from somewhere that I sipped on for several days. By the end of the week, I looked at this generic cup and realized I had no recollection of where I had obtained this cup from. While most of the things I couldn't remember weren't significant it was the mere fact that I couldn't remember that was extremely upsetting and would lead to crying spells.

There were so many days that I was completely convinced that Mike was ending our life partnership with absolutely no reason to think this. The most frustrating thing? I wasn't even feeling depressed and yet I was more emotional and crying more frequently than I think I usually do when I am depressed feeling. It literally was as though I suddenly lost all of my coping skills. I could only handle feeling overwhelmed, overstimulated, stressed for about 5 minutes max before I would break down into tears - and sometimes I couldn't stop crying for 2 hours or more. My neurologist told me that I needed to address this in my mental health counseling or as my brain heals from the injury "it will get stuck like that". Great, like that didn't add even more stress to me during this. My counseling had to be placed on hold though as my cognitive behavioral therapy was virtual so there were times I couldn't be on the computer, and it was unsafe to undergo EMDR therapy due to risk of seizure with a concussion. 

After a few weeks, with symptoms not improving and probably only because I had a crying spell with one of the nurse practitioners, a brain MRI was ordered but didn't show any explanation for my continued symptoms and then after a couple more weeks, I was finally referred to a neurologist. The majority of this process I felt completely confused, no idea what to expect, no idea if what I was experiencing was normal, and feeling terrified this would be how I'd be for the rest of my life. So, to finally be allowed to see a neurologist was a large relief...except though of course, my anxiety of providers I'm not familiar with and my fear of being dismissed and overlooked, misunderstood as a rare disease and medically complex patient. 

The earliest availability with the neurologist I was referred to was mid-July. My case manager and adjuster both agreed this was too long of a wait for me to be seen by a neurologist and asked if my neurologist would accept worker's comp and see me instead. My neurologist, a saint of a man, agreed as a favor to me because he knows me well and is aware of my mistrust and fear of new providers. 

With all the approvals in place, I was able to see my neurologist who advised my brain looked good and cautioned me to only use analgesics 2-3 times a week, not daily, as it could worsen my headaches. Instead, he wanted to focus on preventing my headaches and prescribed Topamax for me to try. It would take up to 6 weeks to become fully effective and has some bothersome side effects and so it's recommended to take it at night so that one sleeps through the side effects. This, of course, had to be approved by my worker's comp team before I could obtain the medication though. My neurologist also recommended that I discuss with my adjuster the logistics for me to have a reduced work schedule to allow time for my brain to heal. He told me that my brain hadn't been getting the time it needed to heal and jumping straight back into work and usual activities hinders the healing process following a concussion. Additionally, he advised me that my difficulty to remember words, using word salad, saying phrases backwards and even repeatedly saying the same thing over and over were all a signal that my brain was needing a break, it was working too hard. 

I indeed did experience side effects from the Topamax - namely numbness. Both of my arms became numb, and it was bothersome, but I was willing to withstand it if it would help my brain. However, by the 3rd night on the Topamax my legs became numb and were hurting. I could barely sleep that night from neuropathy like symptoms in my legs. I thought perhaps taking a hot shower would help my legs feel better. That was the wrong move though as I nearly fell more than once in the shower due to the severity of numbness in my legs and I couldn't feel how hot the water was, so when I got out of the shower my body looked like it had a severe sun burn. I called my neurologist that morning who immediately switched me to Candesartan. Migraine prevention is one of the off-label uses of Candesartan as it is actually a high blood pressure medication. Again, he instructed for me to take Candesartan at bedtime in case it made me drowsy, and it would take a while for it to build in my system. He also advised he wouldn't want to test if I no longer needed the Candesartan for at least 6 months and possibly not until a year. I also required worker's comp approval to try this medication and then again, each month to obtain a refill.

Let me tell you, I am in love with Candesartan. It is an old medication, and I don't have any negative side effects. It doesn't make me drowsy but if I take it at the right time, it allows me to actually sleep well throughout the night. I have never slept as well, especially continuously, as I do with the Candesartan. It doesn't leave me feeling groggy the next day either like all other sleep aids/medications do. And of course, the very best thing about it is it does help reduce my symptoms to a tolerable level. I have not recovered to how I was prior to my fall and am not anticipated to return to that baseline either. I did require my dose to be increased as one missed dose caused a several day flare of my symptoms and one missed dose shouldn't lead to such a long recovery. 

Loud noises, overstimulation, and the decreased frustration/stress tolerance levels have been extremely difficult to navigate as they feed off one another and would then trigger a Migraine headache. Loud noises start to overstimulate my brain, as I become more stimulated the less I can tolerate and the more emotional I become the more likely I am to cry and every one of these things trigger headaches for me. There are also times that the slightest noise is too much for me and I need complete silence. I have been unable to find headphones that cut out 100% of noise but I do have noise cancelling ear buds and headphones that Mike got me to help reduce this cycle. There are times that I require using both my earbuds and headphones simultaneously as the noise is too bothersome with just one. Certain sounds and frequencies are at times more bothersome than others and at times they're not, there is no 100% consistent predictability to what will trigger my Migraine headaches. To make it worse, when I can't escape noise, it has triggered a form of anxiety in my brain that has at its worst required me to use all my strength to not smash my head into something to try to make my brain stop hurting. There have been plenty of days that I come home from work, and I message Mike "I'm lying down, leave me alone until I get out of bed" and he knows that means my brain is requiring complete silence and darkness to recover to a functioning level again.

In the midst of all these events transpiring, I was crying at nearly every turn due to my anxiety and fears coupled with my loss of coping skills since my fall. Once I was able to resume counseling, my counselors started working on identifying the root cause of my emotional distress and loss of coping skills. And we came to the conclusion that while a symptom of PCS is a lower tolerance level for stress and frustration and increased emotionality, trauma was also contributing to my increased emotional state. It was as though I had been transported back in time to when I was 9 starting with my first surgery. As a 9-year-old, I didn't have any coping skills, everything was new, confusing, and scary. Which was exactly how I'd been feeling. I didn't have any providers I trusted then or in the beginning of my concussion. It'd been a week-by-week trial and error for me and Mike trying to fine tune the best things for me and him to do to help me. And it's during this that I realized I need Mike and I truly don't know how I would be navigating all of this emotionally without him. Perhaps that's why I was convinced he was leaving me even. I was letting him closer to me than I ever had before, something that is scary to me, something against the vow I made to myself following my divorce. It was all too much at once and I felt vulnerable on all fronts. 

Mike's been really great though throughout. He makes every effort to answer my calls or call me back as soon as he can because he knows that I'm calling because I'm spiraling, and I need him to help walk me through it into calmness. He pays attention to all the random, useless information I tell him so that when I forget something, he can help remind me and prevent a spiraling episode. When we're in person and I start to spiral, he physically makes me stop and just breathe with him. And it was working! Slowly, over time I've required less time to calm even by myself and lengthened my tolerance level for stress, frustration, and overstimulation. Over a year later and all my symptoms are still not at the level I had pre-PCS but it's much closer at least and much more tolerable. Sometimes I'm able to go almost two weeks without crying from my decreased stress or frustration tolerance level and increased emotionality. I no longer feel insecure about my relationships with others, and I can tolerate loud noises for longer periods before requiring noise cancelling headphones. 

Once my symptom improvement maintained but I was no longer seeing improvements, my neurologist and I agreed that I had achieved maximum medical improvement and not anticipated to ever return to my baseline. My worker's comp then scheduled an Independent Medical Exam by another neurologist at my 1-year mark of my injury to determine if I still required the Candesartan. 

I finally received the notice that my worker's comp case was being closed as the independent neurologist found that I have achieved maximum medical improvement and my medication and any other future claims related to my injury would no longer be covered under worker's comp. Simply put, my PCS won't get better and even though I have only improved as well as I have because I am taking Candesartan, worker's comp has cut me off and doesn't find that Candesartan is needed to maintain that improvement. However, I expected their ruling and while it does suck to have to pay for my medication for the rest of my life it also means that I don't have to jump through any of the hoops that's required by worker's comp to obtain the continued care I need for my PCS. 

I hope I never have another fall again. I am particularly careful now when walking as my brain can't handle continued injuries. This is my second fall as an adult with a head injury that caused a new life-long condition. 

If you or someone you know receives a head injury, I implore you to take it seriously. Concussions are no joke. Seek out the care of a neurologist for monitoring and possible treatment options. 

La Mémoire Noire

La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.

When You're Eager for Medical Testing

 

I don't think I've ever been so excited to undergo medical testing as I have this last year. I felt like I was literally begging for any medical test to be ran and I wouldn't even say I felt that way during the 6.5 months I spent seeing 7 specialists to ultimately diagnose my Abdominal Migraine. Sure, I was willing to do any test, but I didn't realize at the time that I needed tests to be done...I didn't have any idea of what needed to be done to determine why I was having debilitating pain that kept me bed bound for the day except for my time spent at work. But this year has been different. In fact, everything has been different ever since my gallbladder removal in August 2021 and I believe this present issue stems from that surgery as well.

My gallbladder removal exacerbated my undiagnosed Abdominal Migraine and I believe it also kickstarted something else - what exactly is yet to be determined. Let me back up and I'll give a brief timeline for understanding. 

• August 2021 - gallbladder removal, chronic debilitating pain starts following surgery. I'm started on Lyrica in December. After surgery, I begin losing about 10 pounds a month until February because I have no appetite and Mike forces me to eat one meal a day. In March, I started to gain a small amount back and then hold steady as my appetite improved a bit.
• April 2022 - diagnosed with Abdominal Migraine, Amitriptyline medication is added to the Lyrica. Sometime between April and July, I start noticing that not only do I feel full easily and quickly but I also feel like I need to vomit.
• July 2022 - I start vomiting whenever I feel too full. It literally feels like I have food all the way from my stomach to the back of my throat. If I don't vomit, I continually regurgitate it and swallow it on repeat until I lean over, open my mouth, and squeeze my stomach. This is not vomiting caused by nausea. This will begin to progress to increase in frequency and ease to the present day. My weight continues to incrementally increase again until by January 2023, I have gained back almost all of the weight I lost following my gallbladder surgery. 

This entire time, I'm keeping my GI specialist informed. I started asking for an EGD, even though I wasn't due for another one until 2023. He tests me for C. Diff, he's monitoring my labs but everything keeps coming back fairly decently. In spite of vomiting up to 3 times a day, I'm maintaining weight. Some days I don't vomit at all. Most of the time when I do vomit, it's not immediately after ingesting food or drink and I don't always eat healthy foods. So my body is still able to get enough calories and nutrients to sustain itself. We try adjusting PPI dosages and trying different PPI medications. I undergo a food test study where I eat a meal with radioactive substance that is recorded in a body machine to determine the rate my stomach empties into my small intestine - to determine if I have gastroparesis. It shows my stomach empties food faster than someone with gastroparesis. 

In December 2022, I finally undergo an EGD...but it's pretty normal, some mild gastritis but no unusual acid found, no bile seen at all, esophagus looks good, my usual polyps are found, no sign of a hiatal hernia. I ask to complete a SIBO test, just in case. It came back as suspected SIBO...but I question the accuracy because I think I may have skewed the results by doing my baseline breath sample twice because I was uncertain, I had done it correctly at first. But either way, I completed a round of two antibiotics for SIBO. Nothing changes. 

The only thing that reduces the vomiting, not eliminate it, but reduce it is not ingesting anything. However, I discovered during a partial blockage that when I don't ingest anything...my body will make me vomit bile - and that was one of the most, if not the most, awful taste I've ever experienced. 

I undergo an EGD with Bravo Test to check the PH level of my stomach acid. For 10 days before the attachment of the Bravo test capsule to my esophagus, I had to stop my PPI. This resulted in vomiting bile that tasted of pure lemon juice. At least it was better than regular bile taste. My throat becomes inflamed and irritated though from the vomiting of bile without the protection of my PPI. The Bravo test comes back with significant acid reflux and esophagitis. I'm still not sure why I needed to complete this test because I've been diagnosed with GERD since my colon removal in 1995. However, my GI assured me that it would be helpful in identifying what may be going on and what steps to take. Oddly enough though, the surgeon I went to in 2021 for a second opinion about my hiatal hernia following my gallbladder surgery recommended an EGD with Bravo Test. The reason he did, I've since forgotten because my hiatal hernia was so small at the time, he wasn't even positive I had a hernia. And I wasn't having the urge to vomit or uncontrolled acid reflux. But fast forward, and I'm going to have that test done anyway. Fine by me, just as long as we're doing something to identify the cause for my vomiting and can attempt to resolve it. 

The next test to complete is an Upper GI Series with Small Bowel Follow Through. Essentially, I drink barium contrast and images are taken as my body digests it to help evaluate for small bowel obstruction. In my experience, this hasn't been very helpful except to say yes, I do have adhesions or in the case of when my small intestine wrapped around itself. But this type of test was unable to determine there was a stricture around my small intestine from adhesions resulting in my near death from excessive vomiting and diarrhea. That was only discovered through exploratory surgery. However, I am willing to undergo this test. It is just one step closer to something else being done and a checkmark for insurance requirements for further testing. My GI wants to do this test though due to my history of a stricture around my small intestine caused by adhesions. He thinks that small bowel obstruction could be contributing to my vomiting, and it very well could be, that is what caused my vomiting in high school after my ostomy reversal. 

The following week I will undergo an Esophageal Manometry. I had a PTSD related panic attack once I looked up this test. A tube must be inserted through the nose into the stomach and then the patient swallows while the tube measures the motility of the esophagus to test for different conditions. I absolutely want to do this test but I'm terrified of being awake while this tube is placed. I think this test is necessary as I've thought all along that there is something wrong with my esophagus. Fortunately, my GI agrees to place the tube under sedation and to allow my dad to be with me during the test to help calm my trauma responses. This is scheduled for May 11. Just like the EGD in December 2022, I am 100% ready to do this test. I am excited, eager, impatient to do this test. In fact, let's do any and every test that may possibly answer why I'm vomiting so it can then be treated. 

In all reality, I anticipate I'm likely facing surgery to resolve my vomiting at some point in the future. The Esophageal Manometry can help to diagnose or rule out a few conditions, majority of which can be treated with surgery. I accepted a long time ago that I would likely have future surgeries and at this point, if surgery is what will help resolve the vomiting...I'm eager to undergo surgery too and the sooner the better. I just want to identify the source and work on a treatment plan to resolve it. 

My New Diagnosis: Abdominal Migraine

After 6.5 months of chronic pain that was only improved but not cured by Lyrica, consults with 7 types of doctors, a multitude of tests and an absorbent toll physically, mentally, and financially - I finally have a diagnosis: Abdominal Migraine. 

All of my tests have come back normal from my various specialists except for my pancreas enzyme and platelets that were elevated. I underwent 2 CT scans, abdominal ultrasound, MRCP, 3 MRIs, EEG, sleep deprived EEG, EMG, nerve condition test, and a neuropsych test with all unremarkable results that provided no explanation for my new symptoms and pain. With these normal results, my neurologist came to the conclusion that I likely have abdominal migraine which is a type of migraine. 

My doctor explained that migraine is a chemical imbalance in the brain and depending where at in the brain determines what type of migraine and mine happen to be abdominal. He stated this would explain my trunk pain, chronic nausea, dizziness, scalp sensitivity, hearing sensitivity, headaches, lightheadedness, brain fog, appetite loss, and chest pain. Through our discussions and medical history review, we came to the conclusion that my abdominal migraine started in 2015 after I fell and hit my head. A couple days after the fall, I had a sudden, intense headache that pain medication was unable to treat and after that I've had chronic nausea ever since.

The only medication that's been able to manage my chronic nausea is Compazine, which is an abortive migraine medication to break through migraine symptoms. And Zofran can actually trigger a migraine and hasn't been effective in managing my nausea. To treat my abdominal migraine, he's started me on Amitriptyline which is a preventative migraine medication. 

My doctor explained that abdominal migraine is typically diagnosed among children and often forgotten about for adults often leading to other diagnoses such as IBS. Through our discussions though, this diagnosis makes sense considering all of my accompanying symptoms and the time frame of events. I'm relieved to finally have a diagnosis and a new treatment to pursue for my symptoms. 

It will take 6 weeks for the Amitriptyline to reach it's fully effective state and I've been taking it for 4 weeks now. During the 3rd week, I started noticing periods of time where I was pain free for the first time since these new pains started. I am still requiring the Lyrica in conjunction with the Amitriptyline presently to treat my pain but this may change over time as the Amitriptyline reaches full efficacy levels in my body and dosage may be adjusted. I haven't been experiencing nausea either. I will see my neurologist in another 4 weeks and any medication changes will then be decided upon as he didn't want to make any changes to my Lyrica or Compazine yet. I haven't had any changes to my appetite, although I'm not bothered by that. 

I look forward to my next neurology appointment to see what medication changes may be decided upon and continuing improvement to my symptoms now that a diagnosis has been reached. 

Colon Cancer: A Family Tribute and A Reminder

This March, Colon Cancer Awareness Month, hits harder this year than those previous. Colon cancer runs in both sides of my family and as a person with the hereditary colon cancer syndrome, Familial Adenomatous Polyposis (FAP), I particularly know the importance of colon cancer screening firsthand. 

Due to my FAP, I required my colon to be removed at age 9 as my precancerous polyps were starting to turn cancerous. A fact that was difficult to obtain as my primary care doctor had refused me the necessary referral to be evaluated by a GI specialist - a refusal that could have cost me my life. 

Colon cancer goes beyond me though. FAP runs in my mother's family. She was diagnosed with colon cancer just 3 months after I was born. My grandfather had FAP and had colon cancer as well, he later died from stomach and esophageal cancer caused by FAP. Both of their stories can be read in Touch of Cancer.

Beyond my grandfather, other members in his family likely had FAP including his sister, mother and her two brothers, three cousins, and two nieces. Beyond that, we are unsure who else has since had FAP among their family lines. 

Colon cancer also runs on my father's side of the family. In his family, my grandmother died of colon cancer and two of my aunts have had it - one being my aunt Martha who we recently lost.

My aunt Martha was extremely healthy her entire life until she developed colon cancer - likely about a year or so ago. Good genes and long life run in my dad's side of the family - several family members living into their 100s. My dad is the youngest of 7 siblings - the oldest one is still in good health at age 89.

Martha was 83 and could have likely lived a much longer life if she had completed the recommended colonoscopies to prevent colon cancer. She never went to the doctor as far as I'm aware of since becoming an adult.

She began having symptoms of unexplained weight loss, bloody stools, change in bowel habits, loss of appetite, weakness. We weren't aware of all of these changes - only the weight loss. She wasn't diagnosed with colon cancer until mid-February 2022 when she was basically forced to by my parents after she fainted upon answering her house door. As it was told to me, she figured she had colon cancer just like her mother, but she had been refusing to go to the doctor or hospital out of fear of never returning to her home. Unfortunately, once she finally agreed to be evaluated, she was diagnosed with colon cancer with metastasis to the liver and lungs that was terminal and given 8 weeks to live. 

Sadly, we lost her on March 22, 2022 - 5 weeks after diagnosis. My last visit with her she was barely able to speak and hard to understand, she had difficulty staying awake. We were fortunate to have hospice care available to keep her as comfortable as possible during the last weeks of her life as the pain did become increasingly worse.

Please take heed from the story of my aunt Martha and complete your recommended colonoscopies for prevent colon cancer in yourself. Please go to the doctor regularly and notify them of any changes in your health, any symptoms you experience. Please do your best to not be another colon cancer statistic.

My Tribute to My Aunt Martha

Martha and Me

My aunt Martha was a steadfast, loved, and integral presence in my life. She was one of several family
members who literally helped raise me from the age of 3 months. She spoiled me to no end as a child whether it was ensuring I had plenty of my own clothes to keep at her house, displaying my portrait on her mantle, or unnecessary gifts such as my 3-foot christmas stocking full of items.

She taught me to enjoy a variety of word puzzles, jigsaw puzzles, solitaire, and mahjong.

She supported everyone in her life, she was always in everyone's corner no matter what. She showed her love through gifts and loans to support others in their life goals and interests. She was ever giving and generous to a fault. She constantly put others ahead of herself even if it caused herself harm. She was ever more concerned about others, their feelings, and not wanting to inconvenience others than she ever was about herself.

If she discovered something that you liked, she would surprise you with a gift of that item even if that meant trying to give you her own possession. Even when she was in her last weeks of life, she wanted to read my children's book to show her support.

She was an avid believer in the power of positive thinking. Every time when asked how she was, her favorite response became "I'm phenomenal!" and said with as much enthusiasm as possible.

She was notorious for bad directions and odd quirks. During one trip to Texas, a route she had driven a multitude of times, she suddenly exited somewhere unfamiliar to me. When I asked her where we were going, she responded "I don't know, I just followed the line". She was able to laugh at herself during such instances.

She was my aunt, who I have held dear in my heart since infancy and will forevermore continue to do so.

The Continued Mystery of My Post-Surgical 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.

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. 

When One Thing Becomes Many

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.

Continent Ileostomies

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. 

FAP and a Feeding Tube: Jeni LeeAnn's Story

This is a Guest Post with Jeni LeeAnn

I grew up knowing I had a 50/50 chance of having Familial Adenomatous Polyposis (FAP). My dad found out he had FAP just before I was born. His mother had FAP and all she knew growing up was that there was some family digestive disease that was killing some family members. She would up dying at 51 years old from complications of a Desmoid tumor when I was age 6.

My story is a little more complex because I was born with no nasal passages and had many surgeries before I could even remember. I do remember spending a lot of time in the hospital and doctor offices as a child. I was always preparing for a surgery or recovering from one. 

When I turned 16 we did the typical scopes to see if I had FAP. Sure enough I had FAP. I don't remember being sad or depressed about it. It was just another thing to deal with. I was no stranger to hospitals and surgery, so for me it wasn't a huge deal.

I had my large intestine removed when I was 20 and reconnected to my rectum so I don't have an ostomy. Life for me was pretty normal for the next 10 years, just yearly scopes and whatnot. I felt blessed and had no major issues.

Jeni LeeAnn

That all changed in 2009 when I started to have nausea, bloating, and pain. My doctor at the Cleveland Clinic did all the normal scans to see what was going on. What would follow would be about 10 years of guessing and uncertainty. He would do 7 surgeries to try to find out what was going on. Two surgeries were laparoscopic and 5 were full open surgeries. Finally, we found Desmoid tissue where my stomach and small intestine meet. It is as my doctor puts it "strategically placed for maximum damage", if it were even one inch lower it would not be an issue.

The hardest part of this time was the fact that I felt crazy. Every test and scan he did came back normal. I felt like it was all in my head. I even tried telling myself there wasn't a problem and would force myself to eat. That would only cause more issues such as being sick for a week following forced eating.

I was incredibly blessed by my doctor, he trusted me and knew what I was was the way it was. He never once said "sorry, I don't see anything on the scans so I can't do anything for you". He always said "I know something is wrong, we just don't know what it is yet". I know if I had many other doctors, they would have given up on me. I am beyond thankful for my doctor, who kept fighting for me.

The last 5 years have been a series of surgeries to put mesh around the Desmoid tissue and keep it at bay. This sadly, only gave me three weeks of freedom for my symptoms and would have a three month recovery due to the amount of surgeries. This seemed like a very high price for only three weeks of freedom. Then things progressively got worse to the point where after my last surgery in December 2019, I was loosing half a pound every day. I just was not able to eat or drink enough. It became mentally exhausting. So we decided to try a feeding tube. In March 2020, I had my Jejunostomy feeding tube (J-tube) placed.

Now, July 2020, I have had my feeding tube for almost 5 months and it has not been without complications. I had issues with granulation tissue as my body was healing from the surgery. The feeding tube had to be placed a second time which created a second hole. Due to Covid19, my doctor didn't want to risk infection due to any leaks from ingesting food or drink so I was nothing by mouth for three weeks until the hole was healed. 

I clean my feeding tube daily, keeping the site dry and flush the tube every three hours to keep it clean and for me to remain hydrated as I have difficulty drinking enough fluids. I complete nightly feedings for 10-12 hours with a nutrition formula I obtain through a home health agency. I obtain about 75% of my nutrition, or 1000 calories, through the feeding tube and about 500 calories from oral ingestion.

The feeding tube has given me my quality of life back. Food now is back in its proper place in life. It's something I can enjoy when it sounds good not something I have to force and get sick from. I feel incredibly blessed.

Jeni LeeAnn obtained a Bachelor's in Ministry Leadership and has served with her church in various capacities for the last 25 years. Jeni particularly enjoys working with her church's female youth as a youth leader.

Reviewing FAP Monitoring and Testing Results

Currently my GI doctor completes upper and lower scopes of my GI tract to monitor my Familial Adenomatous Polyposis (FAP) every two years. In 2015, I started developing duodenal polyps that were precancerous adenoma polyps caused by my FAP and fundic gland polyps in my stomach. I have an intestinal ulcer above my reversal connection site in my small intestine as well that requires monitoring.

Duodenal polyps are a particular concern for those with FAP as FAP polyps often continue to reoccur in spite of removal. I was ecstatic to hear that there were no duodenal polyps present during this scope. These polyps are precancerous and will turn cancerous eventually. The duodenum area for polyp development is concerning due to the risk of requiring a Whipple procedure. No one wants this high risk surgery that results in the removal of the head of the pancreas, the duodenum, gall bladder and the bile duct. My mother required this surgery and it was a very long, difficult recovery for her that nearly cost her life in return and led to the development of diabetes. Additionally, abdominal surgery such as the Whipple, increases the risk of developing a Desmoid Tumor - which FAP patients are already at a higher risk for Desmoids.

I have had several sessile, fundic gland polyps for a few years now. There are several and they are small and in the upper portion of the stomach and are usually benign. However, according to Mayo Clinic, when fundic gland polyps are associated with FAP, they can become cancerous. Sessile polyps are flat, broad based and also considered to be precancerous. Stomach polyps can also cause symptoms of nausea, tenderness, anemia, and blood in stools. These polyps may very well play a contributing factor to my chronic nausea that I started experiencing in 2015. The use of Proton Pump Inhibitors to reduce stomach acid also increases the risk of developing these polyps. I require Prilosec to help reduce my acid reflux and it also seems to help my intestinal ulcer.

I asked my GI specialist if I should change to a different stomach acid controlling medication to further help heal my intestinal ulcer. He advised me that medications, such as Prilosec, focus primarily on the stomach acid and don't really treat intestinal ulcers. My ulcers decreased from 4 to 1 since taking Prilosec yet I'm unable to fully heal my remaining ulcer. This is particularly a concern for me as my ulcer created a hole in my intestine when I was in high school. I went several years later without taking any medication for the stomach acid and without the medicine my one stable ulcer developed into 4 bleeding ulcers. I have to be mindful of my ulcer as it often bleeds to this day, especially when I take Lonox/Lomotil to slow my bowel or if I do not use the restroom for long periods of time. My ulcer actually bleeds less if I use the restroom frequently. My doctor said for an intestinal ulcer that is near the anus, then a suppository or an enema can be used to help treat the ulcer. I am not able to tolerate anything inserted into my anus and therefore this was not an option I could entertain. After my scope was completed, my doctor advised that these would not be a viable option for me regardless as the ulcer is higher in my intestine, above my connection site than he previously realized and it is too high up to be able to be treated with such methods.

Overall my scope results were positive - no duodenal polyps this time, my fundic gland polyps that were biopsied were benign, and my ulcer was stable and also tested negative for Crohn's Disease and cancer.


I go back for a regular check up in 6 months and I will continue my efforts to maintain my health as I await my next set of scopes.