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.
Monday, September 25, 2023
La Mémoire Noire
Friday, June 23, 2023
Living My Best Life
I started this article as 2022 was coming to a close and I was reflecting on all that has transpired and what is presently at hand. I only now feel ready to publish it though as it has been a pretty intense 6 months of 2023 already! As I was reflecting on 2022, I had the following questions and answers and I find myself asking them again now in June of 2023.
Has this been the best year for me? No, absolutely not. Has my life changed for the better this year? Absolutely it has. This acknowledgement led me to the realization that I was and still am living my best life right now. And I'm celebrating it with immense gratitude.
As a result of my medical PTSD, I've struggled with periodic bouts of depression and intense anger with a longing for death that I've experienced since my first surgery at age 9. It didn't help in high school during one of my near-death experiences that I was overcome with the deepest sense of peace I've ever encountered. This peace has left me longing for death even more ever since. So, joy wasn't something I regularly experienced or even thought about, much less sought. To me, life has merely been a waiting period full of suffering. This isn't to say that I've lived an unhappy life. Rather, it's often a life overshadowed by fear - fears of losing my parents or other loved ones, fear of uncertainty, fear of emotional and physical pain, fear of the past repeating itself.
2021 forced me to dedicate 2022 to focusing on my mental health, learning self-care and allowing self-growth. I started 2021 with emotional turmoil from reliving my own medical traumas while writing my own medical story and my children's book about FAP for publication. This was an intense, emotionally exhaustive and long process - much more than I had anticipated. I ended the year with my 8th abdominal surgery and new, unexplained debilitating chronic pain that would take over 6 months for a diagnosis of Abdominal Migraine. I also was diagnosed with Fibromyalgia around this time, a new diagnosis for me that I haven't even given any thought to until recently.
I began 2022 with resuming anti-depressant medication and counseling. Shortly after, within the span of a month, two of my family members who had helped raise me, passed away. Not long after that, another family member who had helped raise me moved 2.5 hours away - she was no longer physically close to me in proximity, and it was as though I was losing her too as I was losing those that my childhood life was so firmly founded upon. I was taken back to the loss of previous family members in the early 2000's that shook me to my core.
In 2022, I added metaphysics courses and EMDR therapy for trauma work to my CBT therapy. While life significantly improved upon appropriately managing the pain of Abdominal Migraine, the end of 2022 wasn't easy either. I started experiencing regular vomiting with the reason only just being determined in May 2023 as that of esophageal dysmotility. I lost another family member and am preparing for the loss of yet another family member. And my trauma work to process not only my past trauma but also my future fears is extremely emotionally difficult work.
And yet, I'm at a place in my life that I can't deny is the happiest time of my life. I'm cherishing every moment with my parents. I have built a family and life with my life partner, his son and family. I've regained my quality of life after enduring a year of debilitating pain. I'm learning and practicing self-care and healing from my past trauma. I'm maintaining employment, serving in new advocacy roles for the cancer and rare disease communities and celebrated the 10th anniversary of LAP.
In 2021, I attended my first Reiki session and was confronted by my lack of experiencing joy with a challenge to start finding joy. Through all of the hard work I'm doing for my self-care, self-healing, and self-growth - I can finally say that I do experience moments of joy now in life. And they are absolutely wonderful, and I want more of them. I want them so much so that I often am faced with moments of fear and anxiety to hold onto those moments as they're overshadowed at times by my fear of never having them again. This is becoming a lessening concern though as I am incredibly doing well maintaining self-care after a year of trial and error with how to maintain self-care practices.
I'm also relieved and grateful to finally know the reason for my unexplained chronic vomiting after nearly a year of this issue only worsening and learning what my treatment options will be for it. It is something I've really been struggling with since July of 2022 that was only worsening and taking a heavier and heavier mental toll. With my esophageal dysmotility, I am faced with very limited options for treatment - a muscle relaxer or surgery - both of which my doctor doesn't like. Fortunately, I previously took Baclofen in 2014 following developing a bulging disc in my neck and didn't experience any side effects from the medication. My doctor agreed to allow me to trial it for my vomiting and so far, as long as I time my doses right and don't overeat, I'm able to keep food and drink down! I've decided to not pursue surgery for two reasons - not only because medication is working but also, my doctor confirmed I have another stricture around my small intestine. And as he reminded me, no one really wants to do surgery on me due to my long history of surgeries and excessive adhesions. I fully anticipate in the future it is likely that I will require surgery for the Whipple Procedure and/or to remove the adhesions creating my stricture. I'd much rather at this point, trade a surgery for esophageal dysmotility for one or both of these possibly needed surgeries in the future. There comes a point when a person becomes inoperable, and I don't want to hasten that time for myself any more than what's absolutely necessary.
The mental toll I've been under this year has also been compounded by developing Post Concussion Syndrome following a fall in February 2023. This is a subject I will explore in a future post but do not presently feel comfortable publicly sharing the full details of what life has been like with PCS at this time except that PCS has been an extremely challenging and nightmarish experience that no one has been able to truly understand how it's affected me except for my partner, Mike. And that has also been a challenge as it has led me to feel isolated, misunderstood, and dismissed by the majority of people in my life because they don't see or grasp what it's like to have a brain injury that isn't healing at an expected or wanted rate. My brain is still healing with slow improvements, which is something I am also extremely grateful and relieved about and hope that when my brain fully heals that I won't have lifelong complications from the injury.
It's a difficult process to accept when life changes with no guarantee or even signs of improvement to return to how life was previously. In spite of a multitude of changes occurring in the last 2 years with barely any time to adjust to one change before another arises, I can confidently say that presently I am living my best life and even though there are no cures for my conditions, I'm full of gratitude for where I'm at in my life and I eagerly anticipate a world of wonderful things to continue as time goes on.
Sunday, April 30, 2023
When You're Eager for Medical Testing
- 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.
Monday, August 15, 2022
Advocating at Medical Appointments
Self advocacy is often a trial by error skill that we learn out of necessity with chronic illness. Each encounter with a medical provider may be different and can be a teaching opportunity for us. Studies have shown that the more someone is motivated to be involved in their healthcare, the better health outcomes a person has. Self advocacy quite literally can make the difference in better or poorer health.
I've been fortunate to be able to learn from my mother as I watched how she managed not only her own health with Familial Adenomatous Polyposis but also how she managed my medical appointments when I was a child and teen with the same health issues. I watched her in her dealings not only with medical providers but also the insurance and medical supply companies. My mother is a fierce advocate and I learned a lot over the years from her. Here are my best practices that I use for myself for my medical care.
- Research
Knowing about one's health conditions and symptoms is vital not only for personal knowledge and self-advocacy but also to improve coping and adjustment to health issues. Giving up control of one's healthcare management to providers without any input or understanding of health conditions and treatments allows for opportunities for treatment options to be missed.
Gathering information from various sources increases the identification of possible health conditions causing new or worsening symptoms, alternative treatment options that haven't been tried yet, and different medical tests to request.
For instance, I abruptly started having chronic nausea in 2015 after a hospitalization. The standard treatments of oral Zofran or Phenergan were not effective in controlling my nausea. I researched other medications and remedies for controlling nausea and I asked my online medical communities what has worked for others with chronic nausea. After a lot of trial and error and trying various over the counter and prescription options with my doctor, I was able to effectively control my chronic nausea with Compazine and peppermint oil. If I hadn't researched other options and requested my doctor to prescribe medications I was requesting, I wouldn't have been able to find a tolerable solution to my nausea management. I do the same with requesting medical tests and procedures to be conducted when I'm having a new or worsening symptom - whether that's a lab test or procedure such as a scope or imaging test.
- Specialists vs. Primary Care
- Gastroenterologist manages my GI rare diseases and everything that comes with them and the GI organs I'm missing as a result. He monitors my lab values regularly, adjusts medications as needed, completes my upper and lower scopes on a regular basis, monitors my liver, etc.
- Hematologist manages my anemia. While my GI Specialist is able to manage my anemia through oral medication and iron infusions/transfusions as needed, a Hematologist specializes in blood disorders and has an even better understanding of my anemia than my GI specialist.
- Nephrologist monitors my kidney. I have renal cysts that she monitors via ultrasound annually, treats my UTIs, and monitors my lab values regularly. She manages my Vitamin D. While my GI Specialist is able to manage my Vitamin D levels and medication, Vitamin D and the kidneys are intertwined providing my Nephrologist a better understanding of this connection.
- Neurologist manages my Abdominal Migraine. Once I obtained a neurological disorder diagnosis, my Neurologist began managing my medications to treat the Abdominal Migraine including the pain and nausea that it causes. Previously, my GI specialist was ordering my Lyrica and nausea medications when we believed it was solely a GI issue.
- Endocrinologist monitors my thyroid. With FAP, a yearly ultrasound of the thyroid is needed to monitor for cancer risks. She also monitors my thyroid via labs as well.
- Gynecologist not only monitors my reproductive health but she also monitors my hormones to ensure my estrogen is within range and not worsening my Abdominal Migraine. My organs are adhered to my abdominal wall and pelvis by scar tissue and I have a large ovarian cyst, she monitors these issues to determine if either are attributing or worsening my pain levels and to treat the issues as indicated.
- Dermatologist monitors and treats any skin issues I have. While I don't require regular appointments at this time, she has treated me for cysts and scars from my abdominal surgeries that weren't healing.
- Request and Review Medical Records
- Track Symptoms in Detail
- What the symptoms are and what they feel like
- When they started, changed, or stopped
- Duration of symptoms
- What affects the symptoms - medications, foods, etc
- Keep a List of Everything to Discuss at Appointments
- Create Online Accounts with Medical Providers
- Maintain Regular Communication with Providers
- Avoid HMO Insurance Plans
- Obtain Consultations
- Ask About Differential Diagnosis
- Request Explanation and Documentation of Denied Medical Requests
- Change Providers
Monday, April 25, 2022
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.
Wednesday, March 30, 2022
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 |
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.
Monday, November 8, 2021
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 |
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
- 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
- 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
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
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.
Wednesday, August 4, 2021
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
- Surgical consult for removal of gall bladder
- Recommendation for liver biopsy
- Pelvic ultrasounds
Wednesday, June 16, 2021
Turning age 95 with Familial Adenomatous Polyposis
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.
Carleton and Sheila 75th Wedding Anniversary |
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
- Low blood pressure
- Lack of perspiration
- Sunken eyes
- Increased heart rate
- Fever
- Delirium
- Unconsciousness
- 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
- 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
Saturday, January 30, 2021
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.