Familial Adenomatous Polyposis

Join the Conversation on
Familial Adenomatous Polyposis
177 people
0 stories
74 posts
About Familial Adenomatous Polyposis
Explore Our Newsletters
What's New in Familial Adenomatous Polyposis

My Experience with Medical PTSD

The doctors diagnosed me with severe Anxiety and Depression at a young age, and even now I suffer every day from my mental illnesses. However, I never realized that I most likely also suffer from another underlying mental illness condition until I came across an article about it.

I’ve struggled with medical trauma, or illness-induced post-traumatic stress disorder (PTSD) since the age of 11, when I also found out that I also have a physical medical condition related to my digestive system and precancerous polyps.

What is Medical trauma or PTSD?

According to Faces of PTSD, a blog written by a PTSD patient for fellow patients, medical trauma/PTSD can occur after events that “invoke intense fear, helplessness or terror, including but not limited to:

• Diagnosis of a life altering or life-threatening illness diagnosis for oneself or a family member/partner

• Severe pediatric illnesses: parents, children and family members are all at potential risk of developing stress disorders

• Assault, malpractice or negligence by a medical practitioner

• Life threatening emergency medical care

• Traumatic childbirth, including but not limited to premature deliveries, birth defects, high risk pregnancies, and emergency caesarean sections

• Miscarriage of a pregnancy or ectopic pregnancies

• Extended or confined hospital stays.”

The First Time I Experienced Medical trauma

I have had extreme reactions to almost any medical experience I’ve had since the young age of 12, but I never really thought that anything was wrong with me, per se, until recently.

I thought that everyone reacts the way that I do when faced with a needle, test or general medical procedure, which usually involved intense screaming and crying until I couldn’t breathe, among other things. I also thought that I would eventually get over it – but I never did. It only got a little easier to manage.

The first experience I can remember that didn’t seem right to me (and to my family) was just before the first surgery I had to have on my digestive system.

You see, I was diagnosed the year before with familial-adenomatous-polyposis, or FAP: a “rare, inherited condition caused by a defect in the adenomatous polyposis coli (APC) gene”, as defined by the Mayo Clinic. This condition doesn’t display symptoms normally, so I only knew that I had to be tested for it due to my father having it as well.

When I was 11 years old, I was given a blood test to check if I had the illness, and it came back positive. This meant that I would have to have my colon removed fairly soon, or I could develop precancerous polyps.

I was scheduled to have surgery shortly afterwards and when it was finally time to go, I was terrified. I had what I can probably now say was my first panic attack, where when the nurses tried to put the numbing cream on my hands (to numb the area for an IV), I started crying uncontrollably. I remember feeling like I just couldn’t do it, I couldn’t let them put the needle in because it was too scary and painful and could they please just put me to sleep another way?

I was so distraught and inconsolable that the nurses gave me some medication to help me calm down, and I remember nothing after that. Only from my parents did I learn that the medication knocked me out so well that the nurses had to bring me into the Operating Room in a wheelchair because I was that unresponsive.

That was probably where my medical PTSD started. As I am undiagnosed officially, I’m not sure if that’s entirely accurate.

Over the years following, I’ve had numerous panic attacks in relation to my medical trauma. Due to the fact that my hospital stay was not exemplary (not due to the staff – they were patient with me the majority of the time) as well as that I had some complications with my initial surgery that led me to have two more afterwards, my mental illness just worsened. I didn’t know this, though – and none of my surgeons, nurses or even my family doctor knew (or know) what was happening to me.

I was diagnosed with severe Anxiety and Depression after my surgeries, which my psychologist at the time said was expected because I had had a major surgery performed on me (that most adults don’t experience in their lifetimes) at such a young age. She didn’t guess, though, that the problems extended further than just those mental illnesses.

Even now, knowing what I know, the doctors are still clueless. PTSD is not something that is widely recognized, much less diagnosed and treated appropriately.

More About PTSD

According to PTSD statistics, most people think that war veterans are the only ones that suffer from the mental illness and that they are always provided the proper treatment needed to live normal lives; however, this is not the case at all.

According to a CBC article, sexual assault is the most likely to cause PTSD out of all traumas, not war (as most people would imagine). Also, PTSD affects twice as many women as men in the United States: 10 per cent of women develop PTSD while that same statistic in men is only four per cent.

I look forward to a day where society understands what PTSD is, the various kinds of trauma related to it and how to treat it, and that it doesn’t mean that you’re crazy at all – only that your body is reacting to trauma in the only way it knows how. You are not abnormal, you are not crazy, and you are valid.

This blog post was inspired by a great book called Irritable Hearts: A PTSD Love Story by Mac McClelland. McClelland really showed me that PTSD is a normal occurrence that happens when you go through a traumatic experience, no matter what that may be. She also taught me that it’s okay to take time to myself if I need to, and that no one gets to tell me that I’m wasting my time by making that decision. Thank you Mac, if you’re reading this – you’ve truly helped me.

For more information on PTSD and how you can help, visit these resources:

• Multidisciplinary Association for Psychedelic Studies, (MAPS Canada)

• Different Brains

Anxiety and Depression Association of America (ADAA)





1 comment

How do your #Gastroparesis flares make you feel??

Hi fellow nighties! I was recently diagnosed, but have been battling with undiagnosed for yearssss. I have Familial Adenomatous Polyposis, and an ileostomy. My flares consist of chronic 24/7 nausea, vomiting to the point of dry heaving, painful gas, it’s belching counterpart, and acid reflux has returned this last (current) flare after a much needed hiatus! This usually lasts at least a day or a weekish. I’m just looking to see how this disease affects us all. Thank you for taking your time to read, and (hopefully) respond.

#Gastroparesis #GastroparesisFlare #ChronicNausea #NauseaAndVomiting #ChronicallyLivingMama

1 comment

Reach out! You Are Worth It!

I have dealt with #Depression all of my adult life. Unfortunately, it came along with everything that I have been through medically. I have a genetic disorder called #FamilialAdenomatousPolyposis, which made me susceptible to #ColonCancer. At the age of 16 I was properly diagnosed after my colonoscopy showed that my colon was completely carpeted with polyps. Luckily, they were still benign and I didn’t need surgery immediately.

The summer after I graduated high school I had my first surgery, a total colectomy, a j-pouch creation and I also had a temporary ileostomy placed while my j-pouch healed. It was a 10 hour surgery and I was in the PICU for 9 days and was finally released after 2 days in the pediatric wing. While at the hospital people truly admired how I always had a smile on my face even after everything I had been through for someone my age. I just remember saying that I was just grateful to be alive and that being upset about my circumstances wouldn’t change anything. At that time I completely believed that and is what kept me smiling for awhile.

Adjusting to the ileostomy was hard to say the least. Not only due to body image, but the constant bag leaks and raw skin due to the ileostomy appliance and leaks. It wasn’t just physically painful, but also emotionally. I just remember crying through the night or in the shower where no one would hear me, because I didn’t want my family to know how much I was hurting. I remember sitting on my bed or in the bathroom with a bottle of painkillers and looking at them as a way out. A way to end all this pain that seemed never ending. Luckily, I was able to talk myself out of it numerous times. I would love to say that this was the only time I was ever suicidal, but it wasn’t.

After 8 months with my ileostomy, my j-pouch was finally ready and my ileostomy could be reversed. I have had plenty of hospitalizations in my life due to my FAP, but none that shook me to my core like my hospitalization in December 2016, where I spent a total of 20 days in the hospital. Pancreatitis, perforated bowel, gall stones, cholecystectomy, perianal abscesses, fistulas, beginning of sepsis and a new temporary ileostomy .. these are all things I experienced while I was in the hospital. The pain (both physically and mentally) was one that I have never felt before and I hope I will never have to feel again. Around Day 12, I remember telling my husband, Ryan, that I just couldn’t fight anymore that it was just all too much .. that I just wanted to die.

I am so grateful to my husband, family and friends that were there for me through the hardest times of my life. Whether you visited, messaged me or my family, or sent flowers and care packages .. thank you! You guys kept a smile on my face even if it was submerged in tears.

That hospital stay added #Anxiety and PTSD to my already unstable depression. My mind and my body are at constant battle, and some days are extremely rough to say the least. I have surrounded myself with a wonderful support group, but that doesn’t make it any easier to talk and reach out for help (no matter how much the pain is).

So, to anyone reading this right now, reach out! No one deserves to feel this pain alone. Every day may not be easy, but your life is worth living. You are wanted, needed and loved.

If you need to talk, but rather do it anonymously, please call 1(800)273-TALK (8255)


Hi everyone. I'm Amanda, but my family and friends call me Manders. I'm new here, just looking for people like me who I can talk to.

At 27, I was diagnosed with endometriosis. I had that taken care of, but 6 months later I had another problem.

1 month before I turned 29 I was diagnosed with stage 3 colon cancer. The tumor was so invasive that they had to completely remove my tail bone, because they could separate the 2. Then they filled the hole in my back with muscles from my legs.

After 6 months in remission, I relapsed. The new tumor took even more, and made the hole even bigger.

Now I've been in remission for 9 years, but I'm just waiting for the other shoe to drop. See, my cancer stems from my first chronic illness Familial Adenomatous Polyposis. Or FAP for short. The FAP is an inherited mutation in my DNA, that causes my body to naturally grow cancer. Not fun. And it can pop up anywhere.

And now, the icing on the cake... after getting a splinter in my heel, I got CRPS type 1. It's in my left leg, all the way up to my knee.

But, I try not to focus on the bad. I hope you all have low pain days ahead!

1 comment