Showing posts with label history. Show all posts
Showing posts with label history. Show all posts

Monday, September 25, 2023

La Mémoire Noire

female child peering through the darkness with her eyes visible and barely any of her face showing through the darkness

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, May 23, 2022

10 Year Blog Challenge



It's Life's a Polyp's 10 year anniversary! One of the ways to celebrate I thought would be to do the 10 Year Challenge but blog style!

So much has happened for LAP and myself in the last 10 years. I shared about previously in The Evolution of Myself with Chronic Illness how I've evolved in a large part thanks to LAP and the online Familial Adenomatous Polyposis community that not only urged me to start a blog but also has supported me throughout the years. 


I went from an incredibly shy individual shrouded in anonymity to identifying myself and broadcasting my own medical experiences to anyone who will listen over the last 10 years.

To begin, this was my profile and banner in my effort to remain anonymous. Carrying the symbolism from LAP into my photos, I edited using red filters.

 I couldn't bear the thought of bringing attention to myself directly or being "found out" in fear of judgment for my health experiences. I was still insecure about my rare diseases and the personal details that come along with chronic illness, specifically GI illnesses.



Staying with the red theme of the GI tract, I edited a photo I had taken and used for my then husband's business.





Then I drew myself riding a polyp in the colon to portray the symbolism of Life's a Polyp.



 



With the encouragement of a very kind lady, who made alot effort to discover my likely identity in order to reach me and help me further the reach of Life's a Polyp.

This extra encouragement and support gave me the strength to reveal myself to the world.

With this new level of confidence, I had a few photos taken and this became profile photo.

I love the symbolism of this photo - slaying the infamous FAP polyps in the colon.




For the next wave of banners, I used another photo from the session with the same symbolism.




And of course, as LAP expanded, I updated the banners to reflect new avenues such as the LAP Shop and YouTube channel. 




And today you see the newest profile and banner photos thanks to Mike!



To celebrate a decade of education, awareness, and empowerment Mike designed the special anniversary design for me which was added to Life's a Polyp Shop, we had 3 restaurant fundraisers for the NORD FAP Research Fund, raffles, and Imagine We Publishers donated 10% of sales of Life's a Polyp with Zeke and Katie to NORD FAP Research Fund as well! 

I also wanted to share some of my favorite blog posts and memories over the last 10 years.

Over the years I've had some wonderful guest writer articles including:

2021

2020
2019
2018
2017
2016
2015
2014
2013
2012

Tuesday, December 30, 2014

Curve Balls

health curve balls life's a polyp

Energy is a funny thing. It changes rapidly, without notice. And yet, even at our lowest we somehow manage to summon enough strength and energy to at least do the bare minimum of what's required of us. And then we collapse.


I've fought with energy on various levels since my colectomy that left me requiring iron and B12 for the remainder of my life. Even with iron medication 3-5 times a day, I have yet to reach a normal hemoglobin level again since that first surgery. With the use of daily microlozenges, I've achieved and maintained above average B12 levels.


And yet, my energy is just as much of a roller coaster struggle as it has been all those years ago. Oddly enough, even in my sickest years 8-12 years ago when all I could manage was to complete my studies and my work hours, there was an abundance of times that I remember as having more energy than I have now. I don't feel old, I'm only 29 and yet when I look back on all the various activities that took up every moment of my days for years, I become exhausted just thinking about it! I can't even force myself to maintain as busy of a schedule as I did 6 years ago!


At my very worst, I went to school and work only and I slept every chance I had. At my best, I worked part time, attended school full time, attended sorority events, college activities, and family gatherings with energy to spare. I went out three nights a week with friends, staying out until 3-4 in the morning and rising again by 7 am to start the day all over again. I don't remember resting any except for during the very worst times. I realize my memories become fuzzy after a while, not just due to age but more so as an effect that is associated with my PTSD and coping mechanisms. My energy must have been at higher levels during those years. Otherwise, how did I participate in the various activities demanded of me?


Presently, I am astounded by myself when I am able to participate in activities of chores, hobbies, or social outings after work anymore. Most nights I come home after work and veg on the couch, recuperating from the events of the day. My sleep cycles further affect my energy levels. Increased energy when I'm able to sleep and lower levels during sleep deprivation periods. I question how I managed such full schedules just a few years ago, I'm amazed at what I was able to accomplish on a daily basis. Even a year ago I engaged in more activity by balancing a full time and part time contract job. Now the thought of even PRN work makes me groan with exhaustion. It takes a while to face the truth sometimes. Things we don't want to admit, things we want to blame on our illness but some things we just can't lay at the feet of FAP.
 Slowly I've come to realize that yes, I did have more energy when I was younger and whilst FAP and my health drain my energy daily, I also have a depleted source of energy due to aging. Oddly, this has been a test of acceptance for me. I didn't want to admit that I'm already experiencing normal aging process. I still look incredibly young for my age and within my mind, I still see myself as 26. I actually forget I'm 29, getting ready to stare at 30 in just half a year. I'm accustomed to bothersome symptoms occurring as a result of the FAP, not a normal process that occurs to healthy individuals too.



Living with a chronic illness complicates any situation and blurs the lines between normal and abnormal. So often it's difficult to distinguish the cause of a symptom as related to our illness or related to normal processes. With these blurred lines, it becomes further difficult to notice "normal" symptoms versus the abnormal symptoms that fill our world that we have become accustomed to as a normal reality. Our minds flood with multiple questions in an attempt to identify the source of symptom changes. Is our health declining, is this a flare up, is this to be expected, is this a sign of something worse, could this be an additional condition? It takes us years to adapt to FAP and the associated issues, years of learning what our new norms are, how and what affects us, what is required to recuperate. In spite of our expertise in how our bodies work, a curve ball always presents itself. We become masters of the curveballs, juggling them with our typical issues; adapting, coping, growing...surviving.


A curveball isn't always big, they come in small sizes as well. Regardless of size, they throw us for a loop when we're least prepared for the change. Grab hold of the curveballs and throw them back at life. Prepare yourself the best you can for the next one that is heading your way.

Sunday, February 16, 2014

20th Anniversary with FAP

fap life's a polyp

I'm not very good about remembering health milestones. I don't usually think about how many years since my first surgery or my last and when I do it's not typically anytime around the anniversary. But this year I did remember that it's been 20 years since I've started with my GI doctor. 20 years since diagnosis of FAP, 20 years I've been listened to and 20 years I've battled what FAP is and can become. 20 years.

I had such a difficult time getting any PCP to listen to me and my parents to obtain the necessary referral to see a GI specialist. I'm not sure how after such a fight for the referral I finally obtained one for the best pediatric GI specialists in the state and who is well respected outside of the state. But I did and I'm so grateful. I haven't always liked my doctor. As I mentioned in my last post, there were several years that I hated and blamed her. As I started my own psychological healing, I've realized how terrified I am of losing her as my doctor. I greatly admire and respect her. She has always stood by me and fought for me, whether with other doctors, hospitals, insurance, schools and jobs. She is my greatest advocate. 20 years I've been so fortunate.



I've seen a lot in the last 20 years with diagnosed FAP. I've had seven surgeries, more than enough near death experiences, endured PTSD, cycled in and out of severe depression, given the prognosis of stomach cancer by age 30 (I have two more years to make it past that prognosis!), completed school and maintained full time employment, got married and looking at surrogacy. I have good and bad days like everyone else but I'm hopeful that the worst days are behind me. 20 years it's taken to get to the place I'm at now.

Who knows what the next 20 years will hold. There's always guaranteed sadness and happiness. I do know that I won't have my doctor for another 20 years, it's very likely in that time period to develop cancer again, I hopefully will have adult children by then., I am likely to have lost and gained more family and friends. These are all realities I keep tucked away, taking it one step at a time.

That's how the last 20 years have gone, one step at a time. Although at times it felt like crawling steps and at times giant leaps. I look forward to seeing the future and what's in store but for now, I'm going to savor where I am at now and honor what has transpired to get me here. Our trials and our joys deserve to be honored, they help shape us and direct us in life.

20 years, I've made it. And here's to another 20 years.

Sunday, June 30, 2013

Surreal

life's a polyp

It's been so long ago, the medical tests and procedures, the surgeries and the struggle for life. It's been a lifetime ago but it doesn't always seem like my life. I have to remind myself that it was my life and not someone else's life. I feel like I'm looking through a looking glass, peering into someone else's memories and past. Not my own. And yet it is mine. Every horrible moment, every joyous cause. It's all mine.

I never thought the terror and the battles would fade so much. They don't occupy my mind all the time anymore. I remember everyday but it's just in passing. When my stomach rumbles, when I have to run to the bathroom, when I'm sore. But it's only brief reminders. Even when I have flare ups,  it's just for a night and I can forget the next day. No more constant reminders and complete worry about what I'm eating or what I'm doing. I still feel concerned but it doesn't consume me anymore. How has this change happened?? I've become so far removed from it all. I have my regular check up every three months but I don't have anymore medical tests or procedures. Not even routine. I should have an annual scope but I haven't in 5 years. My doctor knows I'm not budging on this one, I'm not going through the torture of laxatives and enemas. Find another way, I'm not doing it. That's how. I haven't had to go through pain and torture in five years except for flare ups and 1 CT Scan with dye. I'm not being forced to relive the nightmares. I've been granted a pardon, even if only for a short while.

I have to make myself remember the details of those awful years of pain and struggle. It doesn't seem possible that it all happened to me. That it was me going through it all. I swear it happened to someone else, not me. Why are people worried about my health? I'm fine, that wasn't me. But it was. It was me. And they remember. They remember the countless hospital stays and trips. The never ending medical tests and procedures. The need for another surgery. The fear and worry in the doctor's face, the nurses, the surgeons, the team of specialists. The terror I expressed, my screams and cries. My pleas for it to end, to let me die. They remember.

Once I'm thrown back into the medical den it will come flooding back and I'll be consumed again. But for now, for now I've been given mercy.

Sunday, March 24, 2013

A Scarred Life

life's a polyp

Throughout the day while at my desk, clothes shopping, getting ready for a function, or even just lying in bed I'm reminded of what once was and what threatens the future by a single scar and it's never healing abnormality. This single spot as well as occasional tingles along and under the scar lines will never let me forget. On occasion, I still have the sensations of an active stoma and am urged to reassure myself that my reversal wasn't a dream, but remains reality.

Of course I have the typical, vertically long slice down the middle - from the groin to the rib cage. And after repeated slicing in the same line,  it has become rather deep as it curves around my belly button. Accompanying this is a scar on each side of the abdominal length reminder of the previous stomas - one in the shape of a hash mark and another a deep single slash with it's own peculiar complication presented as a knob at the end that never truly heals itself.
This spot is a constant source of irritation and serves as a constant reminder of what I've endured. The knob presents itself as if a stitch is lodged deep inside, forever trying to work it's way to the surface to be released from the captivity of the body. Alas, whether a stitch is embedded in my skin or not, there isn't any hope for discovery. This pustule like spot becomes irritated periodically and collects within itself a clear liquid that pushes its way to the surface that vexes the skin until without conscious act, my fingers are led to this knob to kindly relieve the area of its' building pressure. Once it's devoid of the liquid, it lies flat again against the skin and maintains a slightly open red dot that taunts me to attempt to discover what may lie beneath the skin. The few times I have relented to the taunting of this red spot has been painful as I dug under the skin as deeply as I could allow myself with needles to attempt to catch what may be the cause of such irritation without any success. This spot is also indifferent to hot compresses and ointments. The only time this spot has begun to heal was when I tanned for a month's time, the heat acted to dry out the gradual collection of liquid. However, after tanning completed, the collection was again started. Like most of my health, this also is an anomaly that my doctor and others have been unable to explain.

And then there are other scars that aren't as blatant although continue to serve as visible reminders. Multiple scars on my chest from the repeated placements of central lines and their stitches, a scar on my lower abdomen from a drainage tube, and countless scars on my hands and crook of the elbows where IVs were inserted and needles for lab draws. I do worry about future accessibility for IVs and needles though from all the scarring.



I know some are deeply bothered by the presence of scars and view scars as bodily imperfections and reflections of one's self worth. I don't subscribe to this perception or interpretation of the role of scars on one's life or meaning and I urge you to refrain from such a perception as well. The visibility of my scars have never been bothersome to me, I rather view them as a badge of survival, an so it's never mattered to me when others see or even comment on my scars. In fact, I find it a bit humorous when strangers react to seeing such a scarred up abdomen as they try to ascertain what the cause is of such scars.

It was this attitude that kept me from ever considering products and procedures to lessen the scars. However, when my gynecologist asked to complete a series of laser procedures on my abdominal scars to allow the scars to lessen in color and size as part of a research study, I consented to undergo the procedure. The laser procedures were short repeated sessions and the heat of the laser was uncomfortable, although not unbearable. The heat was most bothersome on my freshest scar, the deep single slash with the slightly open knob. Each session let my abdomen red from the laser's intense heat and it was a display of gradual changes. I was surprised at the results, not only did my scars reduce their pink or red hues and blend in more with the surrounding skin, they also became less puffy and less deep so that they're more level with my skin. I wouldn't have sought such a procedure if it hadn't been part of a research study at no cost to me but I'm glad I had the opportunity to benefit from the laser procedures.

With or without treatments to reduce the visibility of scars, don't let your scars hold you back. Scars don't define us and aren't a reflection of negativity, imperfection or damage to the body. Rather, they are merely reminders of what has been survived. And that, indeed, makes a pretty awesome, empowering statement of self.
I leave you with quotes that speak to the strength of a life with scars.

  • Scars remind us where we've been. They don't have to dictate where we're going. - Agent Rossi, Criminal Minds
  • Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. - Kahlil Gibran
  • In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they're still beautiful. - Alice Walker
  • A pearl is a beautiful thing that is produced by an injured life. It is the tear [that results] from the injury of the oyster. The treasure of our being in this world is also produced by an injured life. If we had not been wounded, if we had not been injured, then we will not produce the pearl. - Stephan Hoeller

Tuesday, January 22, 2013

Secrets

life's a polyp

Living with chronic illness and secrets seem to go hand in hand. Not everyone needs to know our business and for survival and personal protection, it's in our best interest not to be sharing our life history with just anyone. I don't believe it's healthy to be willing to share anything and everything with anyone. It opens you up for any kind of unnecessary hurt that could easily be prevented with discretion and judgment.

It's off putting when someone unprovoked dumps their medical history on others. It makes you stop and wonder what that person's end game is, what's their ulterior motive. It's just in bad taste. It's fine to share with others but we need to be careful what we share and with whom. My policy is that I only share what's relevant with those I trust and that's going to vary from person to person.

My husband is the only one I've dated that knows absolutely every single detail about my health, I'm as open with him as I am with my parents. I'm very open with my parents as they guided me through all my health issues and are able to relate to my issues and needs. Some past boyfriends new some about my health, some more than others but even the former boyfriend who I had plans with to marry, didn't know every detail. One must be careful even with persons thought to be trustworthy, sometimes that perception is merely a facade.

I'll freely discuss any aspect of my health with others in the health circles for support, education and bonding. One of my friends within those circles knows the most out of everyone I'm involved with in the health circles. I'm not avoiding giving details to anyone else, it just hasn't necessarily been relevant for discussion and of course not everyone is as easy to share problems with to commiserate with one another.

Another area though that requires discretion is the work field. There are so many employers who will use any excuse for getting rid of an employee, even if it absolutely has no bearing on one's work performance. Many employers, once unhappy with an employee, will begin to devise a strategy to be able to end the employee's employment with the company. Whether it's gradually increasing workload, adding new responsibilities and duties to build a case for reprimanding an employee to inevitably forcing a decision from the employee - quit or be fired. Not only that but other coworkers can be just as devious. My point is, even people you think you can trust, you can't necessarily trust and you don't want to allow others to use information you've volunteered against you one day.

It can very trying though at times to bite your tongue and not share with another person. I work in the medical field and although I don't have the same medical diagnoses as the patients I work with, I can personally relate with symptoms my patients report. Fatigue, stomach issues, diet considerations, medications, weakness, pain, fear and anxiety, PTSD, etc. They're all symptoms and issues that are typical among any group of persons with any chronic illness. Each illness will have their own symptoms and issues, but there tends to be a base set that each group can relate to. It is this commonality that makes it hard for me not to share my own experiences with patients. It's very frustrating and even insulting (although it's not the person's intention or even understanding) when someone tells you that you have no idea what's like to be sick, to have been in the hospital, to experience xyz, simply because you happen to look healthy. It makes me want to scream sometimes. I don't like to make assumptions about others because of just that. A person can look like anything, that doesn't mean there's nothing else going on - physically, emotionally, mentally, financially, etc.  You just don't know. I'm not going to compare my experiences to anyone else's, but I've been through my share of personal hell - I don't need to compare horror stories with someone else to feel better about my own or diminish others. I do like my experiences to be acknowledged though for what they are - that you aren't the only one with a history. But again, it isn't appropriate for me to share my history with my patients, especially not in any detail.

No matter how many secrets we keep, there's always someone who has similar, if not the same, secrets. And the saving hope is that we each find that person or at least a person or two that we can share all those secrets without fear. Because although not everyone needs to know our secrets, it's also not healthy to keep them all to ourselves without sharing with someone. What are some of your secrets?

Thursday, January 3, 2013

Painful Distrust

life's a polyp

The betrayal of someone once trusted with your life is so significant it often is emotionally and mentally scarring. In Medical Angels and Demons, I shared experiences of blessings and torture with various medical providers I've had throughout my life. The betrayal of trust I suffered by providers at the children's hospital I attended as a child continues to haunt me to this day.

I am extremely suspicious of other medical providers until I am convinced that the provider is competent and has my best interests as a patient at heart. I am filled with regret, pain and rage when recalling experiences with these past providers and my trust with other providers has been tainted. My life would be completely different if I had a competent surgeon, if my care hadn't been allowed to be primarily directed by those 3 residents, if the emergency room team had been thorough and attentive. Had the surgeon listened to my parent's concerns my ostomy wouldn't have been placed on the wrong side allowing for my intestine to wrap around itself and other organs, if the emergency room team hadn't sent me home with the simple diagnosis of being a whiny child then the extent of dead intestine could have been prevented, if those residents hadn't been charged primarily with my care rather than the surgeon, perhaps more testing and treatments would have been completed for better, more directed care and treatment. The pain inflicted and level of distrust between these past providers is so great that it is deeply ingrained in association of the hospital and its affiliates as well. I would never be able to work for this hospital unless absolutely required to in order for survival. I would never be able to bring myself to taking any child of mine to the same hospital, even though it is a children's hospital that is supposed to be great with children and advanced in the care and treatment of children.

Never estimate the stupidity of this hospital or the individuals who work there.
A few months ago I suddenly realized that I should be aware of who the residents are that were assigned to me as a child so that I may prevent unknowingly becoming associated with them.
I can't even trust the hospital's medical records department to provide copies of, guess what, medical records. In my quest to uncover the residents' names, my requests for medical records from the children's hospital has been refused twice. The first time I was told that the request was illegible, even though the medical records staff could read my name, phone and address well enough to call and mail me a refusal. When questioned about the illegibility, I was then told that I must not have completed all the required information. My second request has yet to receive any communication whatsoever, even though the records department advises that records will be provided within 5-7 business days. I've resolved myself that I will be forced to go through my doctor's office and dig through my old charts in order to find the information. I would have done this originally but I thought it would just be easier to go through the hospital's medical records directly. How I was wrong. It'll be easier to sift through my multiple, overflowing charts at my doctor's office myself than to have anything sent to me from the hospital's medical records department.
I also think poorly of the hospital and its affiliates for charging individuals money to visit admitted patients, attend doctor appointments, or for patients to park at the hospital while receiving care. Yep, you read that right. I understand a hospital not wanting non patients or hospital visitors parking in the hospital parking lots, but there are other ways to deter illegitimate parkers.

This month I plan to start delving through the old records at my doctor's office to uncover the truth of the identities of those residents and protect myself from potential future harm for those individuals. I hope that those residents are now competent practicing doctors, but I would never be able to bring myself to trust them again with my health and life.
Sometimes we must make extra effort in order to protect ourselves and help calm our neurosis developed during chronic illness and medical traumas. This is a survival tactic and with such efforts, we are more apt to survive.

Thursday, September 27, 2012

Medical Angels and Demons

life's a polyp

I had another routine follow up with GI doctor this week and had great results. I've been taking my B12 regularly for 3-4 weeks now and my B12 jumped from 400's to 800's! It's in the top third of the normal range, I'm not sure I've ever had such a high B12. Course, I don't really notice any difference when my B12 or hemoglobin is low, it all feels the same to me. While visiting with my doctor during my appointment, we started talking about that 1st year of surgeries and previous and future doctors. In my last post I shared about my experiences with my 1st surgeon and the treachery that accompianed him. During my appointment I learned some new information that I didn't remember or know about the medical demons that continue to haunt me. My second complication from my 1st surgery, when I went to the ER for stomach pain that actually was caused by my intestine twisting around itself and surrounding organs my surgeon was actually out of town and it was the 3 residents alone that decided that nothing was wrong with me and told me and my parents that I was merely a "whiny child".  This doesn't change any of my thoughts or feelings regarding my 1st surgeon but it reinforced my contempt for the 3 residents. It is because of these residents that I don't trust any resident. To add insult to injury, when I returned again to the ER after that incident and adequate testing was completed to discover the cortortion and emergency surgery was required as it was a miracle I hadn't died during the night from the lack of blood flow. The residents were aware of all this and no statement to my parents was made, no apology that it had led to near death and could have been prevented, no indication at all that these residents had any compassion or understanding for what I had gone through under their care. If they had completed a thorough assessment and testing the 1st time, my complications may never have progressed to such lengths and my years of pain may have been avoidable. But I will never know. My conversation with my doctor reminded me that although I am safe from my 1st surgeon, I don't recall the names of those 3 residents and am at risk of accidently becoming one of their patients without properly protecting myself by being able to recognize their names. So I am requesting my medical records so that I may discover their names and avoid them for my life.

Just as these individuals have allowed and created lifelong anguish and mistrust in medical providers for me, there are a few medical providers whom I deeply trust and respect. I do not easily trust medical providers and this last year I realized that this mistrust and apprehension about new providers has generalized even to dentists. I trust one hospital and a handful of doctors, these are my medical angels.

My GI doctor, who I have known since I was 8, means the world to me. I feel safe under her guidance, she is compassionate, understanding, and extremely knowledgeable and in fact is one of the top pediatric GI doctors in the state. She was the only female in her medical program and she is near 90 now. In the summers she invites me over for swimming and figs from her trees. She is protective over me and goes to great lengths to protect my physical and mental safety, which is why she continues to follow me when I am almost 30. She has promised if and when I am forced to become followed by another GI, she will thoroughly brief the my new doctor about my history, present, medical and psychological needs. Whenever she requested for another doctor to perform testing, she has physically been in the room to oversee the testing and provide me peace of mind as I know that if she is present, she will oversee my care and protect me from harm. She is very dear to my heart and I trust no other doctor like I trust her. There really aren't enough words to describe how much she means to me, how much I respect and trust her, and all the care she provides me.

My 2nd surgeon was an incredible surgeon. My only sadness is that he is a pediatric only surgeon and he won't be able to perform any future surgeries I should need. He has phenomenal medical skills and outstanding compassion for his patients. He understood my fears, my mistrust, my fragile psyche and he gave me hope and support. He was patient with me and also took great lengths to ensure my comfort. He was the surgeon that performed my last 2 surgeries. After my last surgery, I asked him if he could "knock me out" by ordering me Finnegan to be given when my NG tube was to be removed. I had undergone such pain and misery that year from extensive, unceasing medical tests and procedures, hospitalizations, symptoms and near death. I was on the edge, mentally exhausted from it all and not having to endure the pain of the NG tube removal would help to ease my mind and my body. He told me "I'll order you something better". And he did. The only problem was, the nurses didn't give me the medicine. I told them I needed the medicine my surgeon ordered, the nurses told me that there wasn't anything ordered to "knock me out" and I either could have the tube pulled then or wait until they could get an order, which they said would take several hours. I was so angry. I hated my surgeon in that moment. The words that he didn't order me any such medicine burned in my ears, stabbed my heart, and wrenched my soul. I trusted this surgeon for almost 2 years, I believed him when he told me something. He betrayed me, knowing the betrayals I suffered from my 1st surgeon and his crackerjack team. How dare he! I agreed to let the nurses remove my NG tube without any medicine. As every time in the past, the NG tube made my esophagus, throat, and nose raw with pain and I cried and screamed from it all. Once the tube was removed, I thrashed in my hospital bed for hours. I was overcome with anger, hate, pain and I couldn't stop the screaming, the words I yelled at my surgeon, willing him to hear me, the uncontrolled sobbing that went on for hours until I finally collapsed from pure exhaustion and a pained body from it all. My mind could not respond any other way. My mother tried to comfort me. I couldn't be comforted, the man I thought was my hero surgeon had lied to me and betrayed me. Oh the psychological harm it had done to me. He LIED to me!
The next morning my surgeon visited me. I told him I hated him, he betrayed my trust, he knew all I had endured as a child. He listened to my rant and didn't say anything until I was done. He apologized to me. He explained that he had ordered the medicine but the hospital pharmacy didn't carry the medicine and he wasn't informed so until after the NG tube was removed and the nurses told him how distraught I had been. He explained that if he had known the pharmacy wouldn't fill the medicine he ordered, he would have ordered something else. He explained this quietly and kindly, not a hint of defensiveness in his tone or body. He didn't lie to me, he had tried, he cared. My heart sank with this new information, I had genuinely hated him without real cause. Instantly my mind was began to repair itself from the previous day's anguish and became stronger again knowing that I could still trust this surgeon, I hadn't been betrayed.
There aren't many doctors that will listen to a patient release their emotions and kindly apologize and explain the mishap without defensiveness or blaming the patient but instead continue to provide compassionate understanding.

My anaesthesiologist in high school was also so kindhearted. My GI doctor knew how safe I felt this this anaesthesiologist that whenever I had to have a medical procedure or surgery that required anaesthesia, she scheduled my procedures for when he could care for me. To this day, she offers to do the same for any procedures I have to undergo. Another example of just how amazing my GI doctor is! My anaesthesiologist is a very funny man and uses his humor to help relax his patients, distract them from the procedure they're about to undergo and carefully monitors them. He knew about my difficulty with local sedation, that I've become immune to locals and require general anaesthesia and my fear of waking up again during any procedure. He provided reassurance that he would not let me wake up during a procedure and made certain I was comfortable as I could. I am forever grateful for his care, as every little bit helps to reduce the agony that medical issues brings.

My gynecologist is another medical angel. I didn't like my previous gynecologist, I never felt comfortable with her and questioned her competence. Early on I knew I didn't want to have any children myself, I knew I wasn't meant to become pregnant or give birth and with good reason. There are so many risks for someone with such abdominal trauma to undergo pregnancy and childbirth. The intestine can wrap around the uterus, the intestine can rupture, can't take the medications that are so necessary for daily functioning just to name a few. I knew in my heart of hearts that if I were to become pregnant, I would most likely die and if I didn't, I would wish I had. Mentally and physically, I wouldn't be able to take the pain and the threat of such risks. I definitely wouldn't be able to take it if the threats became reality. After my last surgery, I decided that if I ever had to have surgery again that I would opt to have my tubes tied at the same time. I wouldn't choose to have the surgery by itself because I had already gone through enough surgeries and didn't want to go through another one. But if I was having another surgery anyway, I might as well have this one at the same time. In graduate school I found out about the Essure Procedure and this is what I had been waiting for all my life. You can read more about it at the website, but basically it is an outpatient procedure and tiny metal coils are inserted into each fallopian tube. Anaesthesia isn't required although you are given a light sedative, a relaxer and pain pill as the cervix has to be opened. After about 6 months, scar tissue builds around the coils to permanently block the fallopian tubes thereby preventing pregnancy forever! I researched the procedure, the results, the risks and felt confident this was a great option for me. I searched for a local Essure trained doctor. I had little hope that there actually would be a doctor in my area but there was! I called that day to schedule my appointment. I was only 23 and knew that some doctors would refuse to perform a sterilization procedure for someone so young who hadn't even had any children yet. Realizing the potential obstacle, I had my speech prepared, more like my plea, on why I wanted the essure procedure and why the doctor should perform it for me. When I arrived at the office, I felt like I had chosen the doctor well. She voiced her concerns about my possible regret and I pled my case. She was very understanding and realizing my commitment to not becoming pregnant, agreed to perform the procedure for me.
I met my now husband a month and a half before my sterilization procedure. After 2-3 weeks of dating, I told him what I was about to embark on and I told him that he needed to decide if he wanted to stay or if he needed to exit because I wasn't changing my mind for anyone or anything. Without hesitation, he told me he was staying and would support me in whatever health decisions I made for myself. This said a lot to me about my now husband's respect for others and respect for women's healthcare.
My gynecologist and her clinical staff were very understanding about my medical history, my anxiety and fear of any pain and the trauma I've endured and were thus extremely supportive and eager to provide me reassurance and to reduce my anxiety. The procedure was very painful, although it wasn't the worst pain I had ever experienced and I was determined to make it through to the end of the procedure.
I thought I would have fertility issues even if I did want to become pregnant because I've had health complications that increase infertility, all the adhesions in my abdomen and pelvis, fluid in my fallopian tubes (my medical team never could find out what was going on here), I had a fistula on my tube or something similar. My gut instinct was right, one of my fallopian tubes was blocked shut!
After my procedure, I decided to become a permanent patient of this gynecologist and I've never regretted it. She understands the GI issues I have and how they relate to my reproductive system and supports my healthcare choices. I actually look forward to my annual exam with her as my doctor!

Even though there are medical providers whose incompetence have permanently scarred my psyche and risked my life, there are also providers who have my best interest at heart and make every effort to protect my health and safety. It is because of these medical angels that I'm doing as well as I am today.
What are your experiences with medical angels and demons?

Sunday, August 26, 2012

Tortured Memories

life's a polyp

I keep thinking back to that "year of torture" and I realized I've never actually said what really went on during that year, I've briefly glossed over it when I first started this blog but nowhere else, whereas I have told about my year of constant crisis in high school.

I decided I will try to retell that year and the few memories I have. Mind you, this started when I was 9 and the year ended when I was 10 and my mind has tried it's best to protect itself through repression resulting in a haze of memories that are pieced together like a mismatched jigsaw puzzle.

And so I shall begin.
I don't actually remember the conversation my parents had with me about having my 1st surgery, I just remember that I knew it was coming and that I had to do as my doctors and my parents instructed.
I don't really recall any feelings of fear or anxiousness during this time. The plan was to have total colectomy and jpouch and after healing have the take down surgery.

One thing I will never forget though is when I forgot I was fasting for the surgery and I ate potato chips. I was scared at that point - debating if I should tell my mother or not, knowing that if I didn't that it could mean something bad with the surgery, fearing what would happen though if I did tell. Being the follow the rules child I was, I told my mother. I don't know if that really was the best choice or not because I got a severe punishment that day or the following day. A team of nurses came out to our house and repeatedly attempted to insert an NG tube through my nose, down my throat to insert a fast acting laxative so that the surgery would not require postponing.
This incident in itself was pure torture. I remember being told and forced to sit up while I screamed in agony, repeated attempts to insert this tube that would not cooperate. After countless tries, I was finally told to lie down and my parents helped keep me still and the tube finally cooperated. A metal coil that was in the tube was pulled out, feeling every centimeter of that coil painfully hitting the walls of my nose and esophagus as it was yanked out and liquid began to rush through the tube into my stomach to work it's magic through my then fully intact intestines.

This was my first experience I remember.
I don't remember the endoscopies and colonscopies before this that found my pre-ulcerous condition from stress and anxiety and the FAP polyps nor the ones that later monitored my FAP polyps that led to the final decision for a total colectomy. I remember seeing several PCP's prior to all this as my parents needed a referral for me to see a GI specialist as I was having constant abdominal pains. My parents were repeatedly told by PCP's that I was merely a "whiny child". Finally, a PCP listened and I saw my GI specialist, who is one of my saviors. I remember I started seeing my GI specialist in 3rd grade and end of 4th grade I was having surgery and this was it's horrible beginning.

I had my surgery and my stoma was on the left side, in spite of my parents voicing concern to the surgeon prior to surgery of the placement of my stoma. Everyone else in my family with an ostomy has their stoma on the right side and the different location of my stoma alarmed my parents. My parents' concerns were dismissed  by the surgeon, stating that the way my organs were arranged the left stoma was preferable and there wouldn't be too much lax in my intestine.

I will not bore you with details of each hospitalization or surgery as I don't recall most of them anyway!
What I do remember is that sometime during my recovery after my 1st surgery, that the area of my incision became infected and I had to return to the ER and a large needle stabbing me in the thigh with morphine immediately before my abdomen was cut open, the new incision was rinsed and packed with gauze. I really don't know why I was given morphine for this because it was not as though any time was allowed for the morphine to take effect. I screamed bloody murder while I was being cut open, a solution sprayed into the incision, fingers roughly gracing the inside of my incision and pieces of gauze being jammed into my open wound. During my agonizing screams, I remember hearing my mother's voice telling me to quit screaming because I was scaring the other children in the ER. I began to hate that hospital at this point.
Side note: This sounds extremely callous I realize, but please don't get the wrong impression of my mother. She is very caring and lovingly tends to me whenever I am in need. I am forever grateful to both of my parents and love them dearly.

Before too long I was back at the ER again for severe abdominal pains, I did nothing but cry and couldn't sleep. My parents rushed me to the ER during the night what felt like an insanely high speed to get me there as quickly as possible. An x-ray was done and nothing found. I was dismissed and my parents were told that I was just a "whiny child" and to take me home as nothing was wrong with me.
My parents took me home, feeling helpless as the pain medicine did very little for my pain. The next day my parents took me back to the ER as I had no improvement in pain and symptoms.
Fortunately this time, someone in the ER had more sense than those working the night before and more testing than a simple x-ray was completed. These additional tests found that my intestine was too lax and had looped around itself and my other organs causing some of my small bowel to have already died and risking the other organs in its' grasp. Full blown emergency surgery was done to remove the dead intestine and dead jpouch, release my organs and my stoma was moved from the left side to the right side, as my parents had originally requested. Are you seeing a trend with this surgeon yet?

I continued to have surgeries from the complications until finally the ostomy was deemed permanent due to inability to reattach my ends. I recall very little about these other surgeries during that year. I'm not even sure the timeline of the remainder of my fleeting memories. The only memories I really remember are outlined below and all occurred during those hospitalizations:
  • That first time I had to empty my ostomy myself and being so disgusted, in spite of seeing and helping with the changes of ostomies for years. I could barely bring myself to empty my own until my father scolded me and told me I had to do this myself.
  • The severe back pain I started to have that year requiring my whole spine to be lined up with ice packs. The trauma to my back from repeated abdominal surgeries still haunts me at times but was greatly reduced after physical therapy in high school
  • Dying of thirst from not being allowed to eat or drink for such long periods of the year that one night I decided to break the rules and started to drink that ice cold water from inside my powder lined ice pack until a nurse walking by my room caught me and threatened to take away all my ice packs. I never drank or ate again when I was not supposed to.
  • The best friend I made during one stay, she had back surgery from a rodeo accident. We stayed friends into middle school before finally losing touch.
  • Meeting Reba McEntire, some of the actors from Mighty Ducks, and some other celebrities. I had my picture taken with Reba for a chance to be featured on a billboard. I was dreadful to her and the other celebrity guests, I felt horrible, looked awful and all I could think at the time was "don't exploit me for your own purposes and let me rest".
  • The one nurse I liked, named Chad, who invited me and my parents to his wedding. I was even able to attend.
  • The mother of one of my childhood best friends and my friend's sisters. The mother tried to steal cookies from my cookie bouquet during a period when I was unable to eat or drink. My aunt gave her a tongue lashing and my friend's mother quickly recoiled in what I hope was shame and not resentment toward someone standing up to her. My best friend's sisters playing in my wheelchair, I too weak to care until they repeatedly kept hitting my bed causing shocks of pain to run through my body.
Outside of the hospital I remember being forced to go on walks around the house to regain strength and foolishly, painfully somehow doing a flip over a bar on my playground, just because I hadn't gotten to in such a long time. I was lucky I didn't rip open my incision or fall from the pain that foolishness caused. I had frequent, extreme nosebleeds from the multitude of NG tubes that irritated my nostrils raw. The blood literally pouring from my nose unexpectedly filling containers until finally, my skin would start to clot off the outpoor of blood. The damage would last for over a year before fully healing. My mother home schooled me for my 5th grade year due to constant hospitalizations and never fully recovering my health until 6th grade, when I was still underweight from malnutrition yet healthy enough for activity. During 6th grade a consulting specialist  to my GI specialist attempted to persuade my doctor to give me a feeding tube because of my malnutrition and being significantly underweight, diagnosing me as anorexic. My doctor quickly corrected him in his error. She realized I was not underweight out of choice but out of accustomed behaviors to the extended periods of time without food from the hospitalizations and surgeries. It was this year that I was, however, placed on a high fat diet with sole mission of gaining weight.

And so a new chapter of my life started in 6th grade - it too would be a painful one as half way through the school year I became bullied by all I knew except for 2 classmates, that stood by me. I was determined to make a fresh start the next year. And so I did, and it was a turning point in my life but I didn't escape the anger and resentment I felt for all those bullying students and it would lead to danger within myself that would later implode in highschool.

And so too frequently is the tortured life and soul of one with chronic, invisible illness, so rarely understood by others that are not part of the same club. Sometimes it is a good thing to not be able to remember the past. Fortunately, the memories we are unable to erase allow us to bond more deeply with others who have similar experiences and memories. With the help of one another, our broken souls can begin to mend.

Wednesday, August 22, 2012

Haunted

life's a polyp

There are some physical sensations and memories that will never be erased until the mind fails in it's own ability to be mindful of the past and the body begins to become numb to itself.

Such haunting memories and sensations make forgetting the pain we've suffered impossible and refresh our terrors of the past, and for too many of us - the PTSD that battles for constant hold over our psyches.

In high school when I started counseling for the 1st time, I was diagnosed with PTSD, for years I had been experiencing all the classic symptoms and continued for years after beginning counseling.
Besides the obvious experiences that trigger such symptoms, I recall random times and memories that to this day haunt me. One night of the night terrors left me mentally and emotionally fragile, my parents recognizing the pain inflicted allowed me the privilege to remain at home that next day from school that I could recover myself.  I recall that night so vividly that I am still terrified I'll experience such a vivid night terror again. My parents have always been and continue to be understanding of my symptoms, fears, and anxiety and have been a strong support to soothe me back to safety. 

There are still times that I have the physical sensation that I still have one of my 2 stoma sites.

Side Note: My first ostomy placement on my left side caused my intestine to twist and make a knot over my other organs that resulted in my first near death experiences. Once my surgeon and the children's hospital finally believed me that I was not just being a "whiny child" and something was seriously wrong, that site was taken down and moved to my right side.

The sensations are so strong that I am compelled to touch my stoma sites to ensure that I do not indeed, still have an existing stoma. It is one of the oddest physical feelings and I can't even describe it other than what it feels like to have a stoma. Only those with a stoma can understand the sensation.
Other times I wake up randomly with the sensation of still having an ostomy and the innate behavior of checking to see when I will need to empty the pouch, positioning my body so that I'm not lying on the pouch but also not lying too far from the bed causing a strain on the pouch as it would fall from my body pulling against the seal made, thoughtlessly mimicking the once natural behaviors of emptying the pouch, the burning sensation of raw skin around the stoma, and instinctively jumping out of bed to "empty" the pouch before it becomes so full and leaks.

I don't know if one ever truly stops having PTSD or if symptoms simply become dormant after a better sense of resolution is achieved through counseling. I rarely have PTSD symptoms anymore, but I also am not faced with health crises as frequently as in the past. During medical tests, even as simple as a CT Scan with Contrast, I notice symptoms starting to creep in on me again.

Instead I am more frequently haunted by these physical sensations and memories that lurk behind the shadows of time, reminding me that although now safe, times can change at any moment - never to let me forget.

Sunday, June 10, 2012

A Look Back

life's a polyp

As I prepare for my routine follow up with my GI this week, I look back on how my health once was. Each appointment, my blood labs and UA are reviewed. I'm usually never within range for several electrolytes, but my labs are still better than what they once were. During the years after my surgery for my straight pull-thru, I battled the odds with my out of control electrolytes. I had weekly or more frequent appointments with my GI to review my labs in order determine if I needed to be hospitalized again just yet and to review any recent tests I had underwent. My labs included a sodium as low as 111 (should have had a brain seizure), potassium as low as 1.9 (should have had a heart attack), protein as low as 3, low magnesium and b-12, hemoglobin as low as 4. My medications included potassium, sodium tablets and drinks (spoons of salt in a one ounce cup to be swallowed 3 x day), magnesium, iron, polyp growth reducers, bowel control pills and shots, pain medications, protein pills and foods (shakes, bars, and whatever else my mother could cram in me. Ick!) and of course b-12 shots. I may be forgetting some, as you're aware memories tend to blur when dealing with health events.
I had a team of specialists completing tests and consulting with my doctor. My doctor consulted other specialists around the world and I even traveled out of state for continued testing to try to determine what was causing my out of control electrolytes. And oh were some of the tests dreadful, especially when they were completed repeatedly! Everything from simple x-rays to scans with rectal tubes inserted for contrast to be seen in my cavity (this was the most painful) and even making my blood radioactive and injecting the radioactive blood back into my body. After a year, it was decided I had to undergo exploratory surgery as my lost option. It was during the exploratory surgery that it was discovered that I had an intestinal stricture from excessive scar tissue and a hole in my intestine from an ulcer. You see, the stricture made bowel control and nutrient absorption virtually impossible. Stool was unable to pass through the stricture resulting in extreme pain and constipation until I involuntarily vomited, which released the pressure allowing stool to pass through the stricture. Only it wouldn't stop, because there was literally a liter or more of liquid in my intestine that was finally able to be voided. This cycle is what led to my uncontrolled electrolytes.



Scar tissue was removed and I was placed on TPN to allow the intestine hole to heal.
I also underwent hyperbaric treatments where I received 100% oxygen therapy for around 2 hours 2-3 times weekly for a couple months or more. I don't recall the full number of sessions, just that I was extremely concerned about being able to avoid using the bedpan in the hyperbaric chamber with 4-6 other people watching me. Fortunately I never had to use that bedpan, sometimes I don't know how but so grateful I made it!
After a few months of TPN only, which meant nothing by mouth not even liquid for an extended period of time, I slowly was able to begin drinking and eating foods. I started off with one ounce of ice chips once an hour, to a few sips of water every predetermined interval, to a set amount of water at every interval to being able to drink liquids regularly again. I did the same with food. I was only allowed to eat one egg, with salt or pepper only for seasoning, for breakfast everyday. Then I graduated to my breakfast egg and a small salt and peppered boiled chicken breast with a small amount of unseasoned rice for lunch. Later I was able to also have dinner, and it was the same meal as for lunch. After several weeks of this exact same menu everyday, I was able to include a little more variety. This variety came in the forms of any high protein food, mainly lean meats at every meal and several protein bars and protein shakes everyday. The protein bars and shakes were extremely harsh on my body causing unceasing severe stomach cramps and pain.
I hated eating, for weeks it was the same bland food and then when I could have some variety it was only foods that tasted awful and caused extreme pain.



Over time I had my port removed, was hospitalized on average once every 3-4 months for electrolytes and blood transfusions until 2007, when I received my last blood transfusions. My hemoglobin was 4 and I received 4 transfusions. Funny thing is, I didn't even know my hemoglobin was so low and was in complete surprise when my doctor personally called me at work that day and demanded I go straight to the hospital to be admitted. I argued with her about finishing work or classes that day, going home to pack some clothing like I did almost every other time she ordered me to be directly admitted to the hospital. Many times I would advise my professors that I would be admitted to the hospital at the end of class for "internal bleeding" (nicest and simplest way to say 'uncontrollable bloody stools' I could think of) for an undetermined amount of time and would return to class as soon as I was released. I learned over time that others thought I was crazy for not directly going to the hospital as instructed by my doctor. And this last hospitalization, my doctor was not allowing any room for my day's agenda.

I've been very blessed since then, although its a never ending battle, I'm able to maintain my electrolytes well enough to not require hospitalization. I hope my lucky streak will not break for decades to come.

Tuesday, May 15, 2012

The FAP Beginning

life's a polyp

For those of you that are new to the world of FAP, you must first understand the genetic disease.

Briefly, Familial Adenomatous Polyposis is a rare hereditary genetic mutation on the APC gene that predisposes an individual to colon cancer due to hundreds to thousands of precancerous polyps developing in the colon at an early age. Those with FAP develop significantly more polyps and at an earlier age than those without FAP. If the FAP polyps are not treated, the individual will inevitably develop colon cancer. Due to the autosomal dominant hereditary nature of FAP, the offspring of an affected individual has a 50% chance of inheriting FAP.
There are associated manifestations of FAP as well. These include:
  • Congenital hypertrophy of retinal pigment epithelium (CHRPE)
  • Osteomas, supernumerary teeth, odontomas
  • Desmoids, fibromas, epidermoid cysts
  • Stomach, duodenal, and other small bowel adenomas
  • Gastric fundic gland polyps
  • Brain tumors
  • Increased Risk for Gastric Cancers and cancers of the Thyroid, Pancreas, Liver, Central Nervous System, Adrenal, and Bile Ducts
FAP is sometimes referred to as Gardner's Syndrome. This was described as a variation early on, prior to the level of understanding about FAP that is now known and is no longer acknowledged by the National Comprehensive Cancer Network (NCCN). 

FAP occurs due to a mutation on the APC gene and has been associated with mutations between codons 178 and 309, between codons 409 and 1,580, corresponding to exons 5-8, 9-14 and the first half of the large final exon. While the APC gene is the only gene identified to lead to FAP, there have been over 300 different variations of mutations found on the APC gene thus far.

Attenuated FAP is a variation characterized by a significant risk for colon cancer but fewer colonic polyps (average of 30), more proximally located polyps, and diagnosis of colon cancer at a later age; management may be substantially different. AFAP mutation on the APC gene is usually associated with mutations at the extreme 5' (before codon 157) and 3' (after codon 1,595) ends of the APC gene, and in the alternatively spliced region of exon 9 (codons 213-412). 

If a brain tumor occurs in someone with either FAP or a hereditary non-polyposis colorectal cancer condition, it has been referred to previously as Turcot Syndrome. However, the NCCN recommends against using this term as it is imprecise. 

NCCN recommends genetic testing to occur in infancy for children suspected of having FAP with colonoscopies occurring annually upon age 10, if symptoms do not present earlier requiring colonoscopy. For monitoring of hepatoblastoma to occur every 3-6 months from birth to age 5. NCCN guidelines also provide detailed recommended monitoring guidelines for the additional cancer risks associated with FAP. These can be viewed by creating a free account with NCCN. 

To learn more about Familial Adenomatous Polyposis visit these resources: