La Mémoire Noire

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

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. 

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

Carleton and Sheila 
75th Wedding Anniversary

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

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

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

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Updated 10/20/2022

Ostomy Reversal Anniversary - 20 Years

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

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

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

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

My 2 Stoma Scars and
7 vertical Surgery Scars

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

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

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

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

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

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

My Scars In All Their Glory

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

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

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. 

Traveling with an Ostomy

Traveling with an ostomy is manageable and even enjoyable but it is faced with risks. There are risks of inconvenience in regards of restrictions when flying, restroom access, and appliance welfare. Recently while traveling to visit my Great Uncle for a week, my mother experienced an intensive week of ostomy issues – specifically, appliance issues.

We decided to fly to arrive to our destination and was as any flying ostomate, she was faced with the typical TSA regulations of traveling with ostomy supplies and restroom restraints. Fortunately, she didn’t encounter any hassle from TSA regarding traveling with her ostomy supplies and wasn’t selected for a body scan or pat down. You may find the UOAA's travel tips for ostomates helpful for additional guidance, particularly when flying.

We were away for a full week and my mother packed enough supplies for 5 days worth. Typically her ostomy appliance wears for 3-4 days per change. With your typical run, 5 days worth of supplies was expected to be plenty. However, fate shouldn't be tempted. When something can go wrong, it seems as though it often will do so. And so was the case for my mother.

Her activity didn't particularly change out of the norm from her usual activities. Rather, her activity lessened if anything. While away she was unable to participate in her regular exercise classes and physical therapy sessions. She bathed normally and used the same products she typically uses during an ostomy appliance change except for one product that she occasionally uses. She even followed the procedure exampled by her ostomy nurse. And yet, her ostomy appliance leaked five days out of the seven days we were away.

We brainstormed about what was being done differently, what needed to be done differently. The only difference were the two days that instead of a regular shower, she took a sponge bath. Nothing that we could think of should have been causing such an excessive increase of appliance leaks. With an ostomy you are meant to be able to participate in activities, even strenuous, physical activities. You are meant to be able to shower daily. You are meant to be able to live in various climate zones.

It was Sunday evening and my mother had two days worth of supplies left and we were scheduled to return home on Tuesday. After four days of consecutive appliance leaks and desperate for a lasting appliance, my mother opted to forgo a regular shower Sunday night and instead take a sponge bath in the morning. Miraculously, she awoke Monday morning without any appliance leak. She had two days worth of supplies remaining, one for each day of the trip remaining if needed. Monday day and night passed without incidence. We thought she was in the clear but remained concerned about what would happen if her appliance leaked while traveling home. There wouldn't be time on the plane to an appliance change and the tight quarters of the lavatory would make a change highly difficult even if timed were allowed. But what should she do if a leak did occur? We brainstormed once again and I suggested she use her medical tape to tape a Ziploc bag onto her skin with the appliance safely tucked away into the Ziploc bag and paper towels wrapped around the appliance itself. This would allow for the appliance to remain contained. If needed, she would be able to cut the bottom of the Ziploc bag and attach a pouch clip to even allow for emptying of the pouch.

Tuesday morning arrived and the night passed without issue once again. All of the appliance leaks had occurred during the night. We successfully completed our first flight of the day with just one more flight remaining after a layover. Once again, we thought we were home clear. Twenty minutes prior to our flight boarding the feared but unexpected occurred. Her ostomy appliance leaked. She headed to a terminal bathroom to hastily adorn her makeshift Ziploc bag appliance container. I watched the clock to check on her progress and update her of the flight status at the 10 minute mark. At 8 minutes, we were called to start boarding the flight. She finished her process and we headed toward the plane. Unsure of the makeshift container, her appliance remained intact for the remainder of the flight and drive home.

In spite of the difficulties, our travel was worth it all. Next time though, my mother will pack more than enough supplies in case of such a rare occurrence again. And perhaps know the local ostomy resources ahead of time.

The Intimacy of Disclosure

Today is my 4th wedding anniversary, a place and time I didn't think I would experience. As a child and teenager with an ostomy and chronic illness that embodies the "embarrassing type" of bathroom issues, I had a difficult time with self-acceptance and disclosure with others. I didn't love myself and I couldn't understand how anyone else would not only be able to love me but also support and help me unconditionally throughout my medical issues. As an adult, I see things very differently now. I have told more individuals in the last decade my story or my diagnosis and issues than I ever have previously in my life. I am better prepared to unashamedly live with an ostomy now than when I had an ostomy.

For the majority of my life I have feared rejection from others in regards to my health and at times I still struggle with this. Yet every person I have disclosed my health issues to has not cared and wished I had disclosed earlier. I remain reserved in my selection of whom to disclose my health details to as not everyone needs to know and it can be a difficult subject to breach without the proper context.

Each person handles disclosure differently. Determining what exactly you want to disclose and to whom is key. Individuals in the health groups are frequently asking about this - what do I tell, when do I tell, and whom do I tell. The answer won't be the same for every person or every situation. You must feel comfortable with your disclosure. Trust your instincts about those around you.  If you feel uncomfortable, then perhaps it isn't the right time and another time would be better for you.  I've known individuals who made public announcements to their classes and others who didn't tell anyone. Please do not let anyone try to make you feel pressured to disclose. This is your body, your health and you have every right not to disclose to someone until you are ready.

I don't recall disclosing my ostomy to others while I had an ostomy but rather afterwards, although I can't be certain of this. My method of selection was to only tell those I was very close to and to use educational segments from the videos of the Youth Rally's I attended. I would show my friends segments that showed and explained what an ostomy was and I followed this with questions to determine their reactions to an ostomy. If they reacted in an accepting manner I told them that I previously had an ostomy and shared some of my story. In romantic relationships, I never disclosed early on in the relationship and in fact, the majority of my boyfriends didn't know any details beyond I had surgery due to colon cancer. I chose to disclose to my husband after a tearful misunderstanding. I thought he was making fun of bowel issues such as diarrhea and incontinence. The correction of this misunderstanding allowed for the door to be easily opened to disclosure of my own health issues. Presently, if the context seems appropriate I simply just disclose whatever amount of information I feel comfortable disclosing with that person at that time. I've also discovered that simply answering that I have Short Bowel Syndrome is very effective in conveying information without spelling out the details that can be uncomfortable to explicitly discuss such as chronic diarrhea.

Finding someone you can be yourself with, completely comfortable and open happens in various types of relationships. For years I thought I wouldn't find such relationships - platonic or romantic. I let my fear stop me from reaching these levels of intimacy in my relationships. I experienced an incredible freeing once I allowed myself to be vulnerable enough to be completely honest about all the details of my health and allowed myself to be loved without fear and questioning the other person. The more a person can understand the more that person is able to support you. Acceptance comes in different forms whether it's full knowledge with explicit detail or implied knowledge.

The Touch of Cancer

Colon Cancer Awareness Month always leads me to reflecting upon my own family's experiences with colon cancer. I've mentioned before that FAP has ran in my family for many generations and we have had countless numbers of members die from colon cancer. Although my father's family doesn't have FAP, my paternal grandmother died of colon cancer and a very beloved paternal aunt of mine also unexpectedly developed and survived colon cancer.

Growing up with both my grandfather and mother living with FAP allowed me to gain a lot of firsthand knowledge and understanding of ostomies, FAP symptoms, and eventually cancer. I realized that the majority of people weren't experiencing what my family was and yet it was all completely normal to me. With each generation of FAP in my family, the more we've gained in information and understanding.

My grandpa survived colon cancer and appeared to lead a healthy, stable life. He developed colon cancer in the late 1950s and had his colon removed and a reconnection. I have vague flashes of visiting him in the hospital in 1994 when he developed rectal cancer and underwent another surgery for ileostomy and radiation. I never saw him struggle with his health after that until the last year of his life. He didn't let his ileostomy stop him from what he enjoyed. We went on several fishing trips, hiking through the woods, canoeing and camping trips every year. My grandpa was one of the most cherished individuals in my life. He taught me indescribable amounts of knowledge, skills, and values; we spent countless days and sleepovers together. There was no one like my grandpa and in my eyes, he could do no wrong. He was a strong, independent man with a great love for the land and his country; he fought in World War II and was awarded a Purple Heart. He saw and experienced unimaginable horrors that he kept locked away, rarely to be spoken of again. He was a no non-sense man and yet he could laugh and play in the most fun loving ways with his grandchildren.


Me and My Grandpa

Then one day, the health of this robust man began to decline. It started with reflux after eating at times, this reflux continued to worsen and he began vomiting small amounts and then large amounts after ingestion. He was rapidly losing weight. He sought medical care at our local VA and was prescribed anti-reflux medication and was advised that his esophagus was narrowing causing the reflux and vomiting. He underwent procedures to place stent like devices at the opening of his stomach and within his esophagus to reduce the vomiting and reflux. This reduced the symptoms temporarily but never provided the necessary relief. His weight continued to decrease, his body was wasting away already. Unfortunately, thorough testing wasn't performed from the onset of his symptoms but instead 4 months later when he was admitted to the VA hospital. After he had his ileostomy, he was never told he should have routine endoscopies and therefore never had any performed again until this admission. Once he finally underwent an endoscopy, the true culprit of his symptoms was discovered - FAP had caused stomach and esophageal cancer. This discovery came too late, cancer treatment wasn't a viable option and hospice was elected. Over the course of the next 3 months, my parents and I visited him routinely to help provide care and spend as much time as we could with him. Towards the end of his life, his mental capacity was altered and he was succumbing to the vast effects of cancer. I watched him mistake tv remote controls for the telephone as he tried to answer the ringing he heard. The bedroom I grew up in taking naps and watching wrestling with my grandpa was now his deathbed. He was no longer speaking and rarely conveyed any acknowledgement of his loved ones around him. I held his hand and told him how much I loved and cherished him and although deeply saddened, it was time that he left this earth. He squeezed my hand and I knew my grandpa was still there trapped within that cancer ridden body. I knew he heard me and he gave me the greatest gift he could - a hand squeeze. He died the next day.

My mom was the only child of my grandpa's to inherit FAP and expected her experience to be much like his had been the majority of his life. My mom's journey was fairly calm until she unexpectedly received a diagnosis of colorectal cancer shortly after giving birth to me. My grandpa's health wouldn't change for the worse until 14 years later so everything up to this point was considered normal in our family. My mom expected to have the same surgery as my grandpa's first surgery, large bowel removal and reconnection. My parents were surprised with different news - a permanent ileostomy and very little information. Soon after my birth, my mom had her surgery and experienced a multitude of complications and nearly lost her life. Unlike my grandpa, whose struggles I rarely witnessed until the last year of his life, I witnessed my mom's struggles daily with her energy, ostomy, and frequent intestinal blockages. I've been fortunate to never have issue with food causing intestinal blockages. Yet my mom experiences intestinal blockages nearly monthly in spite of her best preventative efforts and would often require hospitalizations from the blockages. Fortunately, her number of hospitalizations have significantly reduced over the years. In 1998, she underwent the Whipple Procedure due to a precancerous FAP polyp in her duodenum. The surgery was successful but she had a difficult recovery with extreme pain and stomach issues that seriously impacted her ability to eat for an extended period of time.


Me and My Mom

My mom is my true inspiration and my hero. We experience the common mother-daughter relationship issues but I couldn't ask for a better mother. She has always been there for me, so very understanding and supportive. Because of her FAP experiences, she's able to fully relate to my health challenges. That's an incredible and rare gift a mother can give her child, especially when it comes to a rare disease. My mom let me know I wasn't alone in this journey when I didn't know anyone else outside of the family with FAP. Even in her own health challenges, I'm one of her first thoughts. When we were both simultaneously hospitalized, she chose the adult hospital connected to the children's hospital so that we could visit. As an adult, I've had the honor of returning some of the care she so quickly and willingly provides me. FAP has placed very difficult choices and tasks upon my mom regarding herself, her father, and her child and yet she faces each obstacle with an intense resiliency and quiet strength. I would never wish any health issues upon my mom but I can't help feeling grateful that if both of us were going to have health issues anyway, I'm glad we share them. By sharing this disease, she was able to teach me about the disease, ostomies, and the values I would need to develop the skills necessary to live with this disease. I would be lost without her. 

Like most families affected by FAP, colon cancer is sadly part of our family. I think of the numerous ancestors my family has lost to colon cancer and how it has touched each of my family members. The rarity of FAP, a colon cancer causing disease, is evident in each of our stories. We all experienced doctors who were unfamiliar with FAP and thought cancer stopped with the colon with FAP. Medical care and informed medical decisions were not properly provided to all of us. This lack of information and proper medical care significantly impacted us and our outcomes could have been drastically altered with the proper information and treatments. My grandfather and mother could have been diagnosed significantly sooner, received treatments at the early stages of cancer and not have experienced such risks to their lives and ultimately death for my grandfather.

This is yet another reason why research and awareness is essential for the treatment, cure, and survival of  individuals with rare diseases and cancers. The FAP Research Fundraiser was a huge success and we raised $640 to start a FAP Research Fund with the National Organization for Rare Disorders. You can now find all kinds of products with various designs with profits donated to NORD FAP Research Fund at Life's a Polyp Shop. I hope you'll join our efforts.

Book Awareness

I'm taking a moment to shamefully and not so shamefully tell you about a book you absolutely must read. Although this book isn't directly related to FAP, it's written by a well known character among the social media ostomy and IBD circles and by association, is relevant to all sickies of the bowel realm.

If you haven't heard already of The Spider and The Wasp, I'll briefly tell you a bit and provide my review to you as well for your own determination.

The author and close friend of mine, Matt, shares his personal story of Ulcerative Colitis and the traumatizing near death experiences he experienced as a teenager and young adult. Many of us FAP'rs can most likely relate to many of his experiences, I definitely can. But he goes beyond the medical backstory and shares how he survived a hellish, hostile work environment with a boss that could quite arguably be described as insane. For example, yelling uncontrollably at him for not answering his phone while using the restroom. Through his medical trauma and PTSD, he details his accounts of coping with a extreme bully boss in a hilarious fashion.

My review:
" Matt Haarington illustrates in a hilarious manner the necessity of survival skills to face the variety of challenges life presents. Challenges at the basic core, we can all relate to regardless of where we are in life or what we’re facing. Just happens Matt’s survival skills are honed over years of trauma and trial and error coping with the aftermath. Like so many survivors, Matt shows us one method of coping is through humor and it is beautifully demonstrated in Spider and the Wasp. No doubt some of his keenly crafted phrases will spread like wildfire and “clown-boning ass-biscuit” will become the next popular catchphrase you’ll hear while walking down the street.

Matt’s handiwork contributes another piece to his readers beyond a good laugh at the expense of another. We feel a sense of comradery, of empathy toward our fellow mankind to rise up against the unjust and fight for the little guy. And with or without intention, he also brings forth further awareness of chronic medical conditions and the stigma and discrimination that many endure. Awareness of the physical and mental ramifications that many of us with chronic medical conditions face through our battles with the diseases, ourselves, and with others. Matt contributes a work of help to the bowel and bladder disease/disorder community and aids to further instill a sense of pride and honor among those struggling.

As a fellow trauma survivor of similar health issues, I’m proud to recommend The Spider and The Wasp to anyone dealing with their own health issues and to anyone looking for a good read and a good laugh."

Keeping Hope and Finding Acceptance

This year marks 19 years since my first surgery, the surgery that resulted in a "permanent" ostomy for six years, making it 13 years since my ostomy was reversed. Although neither is a milestone anniversary and I tend to always forget about the anniversaries anyway. But occasionally my mind is lingers to think about the amount of time that has passed.

When I had my ostomy surgery I was told that it would only be a temporary ostomy and after three months to allow healing, I would have a jpouch in place of the ostomy. As I've discussed in previous posts, this obviously didn't occur according to plan. Due to complications, I wound up with a "permanent" ostomy. I was told there wasn't enough rectum left to be attached to my intestine. My rectum was kept in place though in spite of having a "permanent"ostomy. I never had any pain or issues with still having a rectum and I'm so grateful it wasn't removed.

 I experienced a lot of anger and denial after the complications started. I hated my doctors, surgeons, hospital and even my parents. I wanted them to all pay for what they had done to me and through a series of life events I was consumed by the rage and became suicidal and homicidal for several years after that first surgery. I never accepted my ostomy. Deep down I knew I wasn't meant to have an ostomy for the rest of my life. I believed it fervently, I hoped for a miracle obsessively. 

After six years, all of a sudden, after a routine colonoscopy my doctor thought that there may be enough rectum to attempt a straight pull thru and referred me to a surgeon for consultation. I could hardly contain myself. It was a long shot, but I had to take it. My life was about to change with the sudden option for reversal. I was terrified I'd wake up after surgery to find out it had been a failure. My parents agreed to give me a thumbs up or thumbs down as soon as I opened my eyes so I would know the result. I didn't know how I'd react if it was a thumbs down, I feared I'd break down immediately and cause my physical pain to increase. I couldn't wait to find out though. Fortunately for my mind's sake, it was a thumbs up and I was able to relax and drift back into a drug induced sleep.

Not everyone reacts or copes with having an ostomy the same way. Ostomies are life saving and can greatly improve quality of life. An ostomy is nothing to be ashamed of and the improvements to ostomies over the years has been amazing to truly make living with an ostomy very good. In spite of this though, some of us have an extremely difficult time with acceptance. I was one of those people and fortunately for me, I was able to have my ostomy reversed. For me, that's what I needed because I was fixated, trapped in a world of rage. I hope that had it been a thumbs down that I would have eventually been able to find self acceptance and lived with the love of life and dignity of so many ostomates I know and admire. 

Mod Bod

We all look at things in different ways and respond differently. Our backgrounds, experiences, and personalities shape our views and contribute to how we respond. Sometimes I think I'm in the lone though in my views. Perhaps it's hindsight from past health battles and navigating all the newbie issues. Hindsight always seems so apparent after making it through to the other side and sometimes it's hard to remember what it was like to be new with FAP. Also, I tend to just do things on my own.

I'm reminded of all this when I'm asked how do you decide who and what to share with others about health details and ostomies. I've never quite understood this question, probably because I didn't really struggle with it. I didn't tell anyone details and I actually only told a handful of people that I had an ostomy. It never crossed my mind to share a lot with others, especially if they weren't in the same health circles as myself. The only people who know all my details are my parents and my husband. I always followed the rule of share what's comfortable, that not everyone needed to know and no one didn't need to know none either. It can't be black and white, it's going to vary based on who, what and why. I found it bizarre when told stories that a child's entire class or school were told the child had an ostomy. Never understood that, but my parents also didn't openly share my health details with others either. There's no wrong or right way about sharing health information. We all share in our own ways and based on our sharing philosophies, other's will seem different and even odd to some.

Another sharing I've never been comfortable with is the open visibility of an ostomy. I don't think anyone should be ashamed of having an ostomy, it's just something I was always very modest about. I didn't think others needed to see me walking around with my pouch hanging out, I don't see the need in it. I find the social awareness campaigns, such as Uncover Ostomy, to be  very well executed in it's portrayal and ability to raise awareness of ostomies and health issues. But we each choose to raise awareness and educate others in different ways and approaches. Each approach will be best received by different groups.

I remind myself of this when I see others completing every day public activities with their ostomies visible, I know the intent and I agree with the intent. I just chose a more timid route of education. It would be nice to be less inhibited but I tend to stick to the philosophy that my health issues aren't everyone's business and not everyone needs to know everything. And those who I do share everything with probably wouldn't mind if I didn't always share everything with them either. Haha.

To each his own.

Happy WOD!

Today is World Ostomy Day to raise awareness of ostomies, bladder and bowel disorders or dysfunction. So happy World Ostomy Day!

There are so many new groups that have come together since I was a child. When I was 9, I knew 2 others with ostomies. My parents started taking me to the local ostomy support group to try to help me cope with all I'd gone through that year. I was the only young person and was absolutely the only child that attended the support group meetings. At age 11 I went to the youth rally and for the first time met other children with ostomies and similar health issues. It was absolutely amazing and helpful, I enjoyed being a camper until I was age 17. I attended the local support group meetings periodically until the support group was disbanded last year and attended several years of the UOAA and YODAA conferences and enjoy the UOAA discussion boards as well.

For years these were the only support resources available. Over the last couple of years various additional awareness campaigns and groups have started as social media has increased allowing for widespread information, advocacy and support with fewer obstacles. With all the access to others with similar experiences, you never know you can reach out to or who will reach out to you. These are amazing developments with powerful results. World Ostomy Day is another part of this new era of ostomy awareness and every new way to raise awareness is important, to think outside of the box is essential as the world and the way the world communicates changes.
What are some of your favorite ways to raise awareness and celebrate life?