familial adenomatous polyposis

So I’m prepping for my colonoscopy this weekend (which is so much easier when you don’t have a colon, let me tell you) and my wonderful mother stocked the kitchen with broth and jell-o before her trip, because knowing dad… Well, if dad was in charge of that task, I wouldn’t have anything to eat today.

Ideally, mom wouldn’t have left at all, but she picked up this really cool trip bringing TED audience members out to wherever they’re filming it, and she had Jesse Williams on her flight! She said she contained her fangirling. There was also a writer on board, but she’s terrible with names. She’ll have to look him up. Didn’t get to talk to him since she was working the front of the plane, but I know if she were on the back half, she would have given all her free time to him just to bring the conversation back to me. So I guess I forgive her for not being around this weekend.

Right, so my mom is amazing and I want her life. I think she feels guilty for passing Familial Polyposis on, but it’s not like she had a choice. But yeah. I love when she shares these small moments from her day. I dunno, I guess the best parts of her day become the best parts of my day sometimes, and this time especially since, y'know, colonoscopy. I’m just so glad to have her for my mother. Crappy (pun alert) genes and all.

2 years ago I was diagnosed with F.A.P. (familial adenomatous polyposis). I had hundreds of pre-cancerous polyps throughout my large intestine, along with 3 tumors. The doctors were surprised because I have a rare health condition. 2 weeks later I was scheduled as a priority for a major (7hr) surgery. I was told it can turn into cancer any minute so I didn’t really have a choice. It was either a life or death type of risk. I was not ready at all, I cried everyday up til my surgery room. I had atleast 30 family members that showed up in the waiting room prior to my surgery, supporting me. Doctors warned me that my relationship might not work out because it’s too much to handle for my other half. They told me that three other young adults with my situation in the previous years didn’t last with their relationships.

I was hospitalized for about a month, liquid diet or strictly IV. I was throwing up liters everyday and doctors had no idea why. I felt like I was dying and I looked disgustingly skinny, weak and sick. I had a drainage tube (bulb) in my lower abdominal region for about 2 months to drain out the blood. I had an ileostomy pouch for 3 months and the dark circle next to my belly button were burns from my watery stool that leaked everyday and every night. I took at least 3 showers a night because my ileostomy bag wouldn’t stick very well.

I’ve had 3 surgeries ever since and have procedures every 3 months. I finished the remainder of my school that was left and still going to further my education. I work out 4-5 days a week, my boyfriend stayed by my side through it all. Late hospital nights and spoiled me with his love, time and of course flowers &a a drawing pad with pencils during my stay in the hospital. I’ve lost a lot of friends because I don’t party as much anymore but I’m okay with that. Family is all that you really need❤️🌺✨

A start...

I have been thinking about blogging about my health journey for the past few years as I thought others facing similar issues may find some comfort in knowing that they are not the only ones going through it… okay that is half of it. The other half and the more scary piece for me is that talking or being in contact with someone perhaps I might find some comfort from hearing from others facing similar struggles that I am not going through it alone.

Okay so maybe I’ve been thinking about doing this for longer than a couple of years… given that I’ve been moving through this health journey of mine since I was 16 or 17 years old.

So why did I wait so long?  I’ve been afraid to reach out to others who are facing the same health issues that I am facing.  Afraid that if I reach out that all that will be shared will be the negative unpleasant stories… afraid that if I speak about  that I will be known for my health challenges and not for the whole person that I am.  I’m also afraid I will become even more focussed on my health than I already am and will lose the hard fought wins I have made to have a life outside of my health challenges.  

And I will go ahead and reach out as I believe there is a way for me to share my story and connect with others facing similar challenges that respects the full life that I am and want to continue to lead irregardless of the health challenges that I am facing.  

So hear goes… 

oh… and one more thing… I am not a medical doctor, a medical expert etc… and the purpose of this blog is for connection and sharing.  If you have medical related questions or others reach out to those people with the training and expertise to answer them.  

kaitkingly  asked:

Hi! I saw that you have F.A.P.--I have it too! I don't really have a question for you. I thought it might be nice to connect with someone with the same weirdo disease as me. I'm 22 years old, colon intact (for now), but I did have a type of thyroid cancer related to FAP about a year ago (I am now cancer free). I guess I just want to say that I hope your health is doing well :) also, if you ever wanted to talk to someone else with FAP, that'd be cool with me. Best wishes! -Kait

Hey! Thanks so much for reaching out! I’m sorry for my late response, I just transferred to a University so I’m still figuring out when I have time to be social and give my tumblr its much needed love and all that jazz.

I just turned 22, actually, and had my colon removed last January. My mom had hers removed at 29 and already had the beginnings of cancer when they did the biopsy, so my parents and I each decided we didn’t want to wait to get a day closer to that. Especially considering three or four of my polyps were already pretty big. They weren’t in the realm of dysplasia yet, so I wasn’t near malignancy, but we wanted to be safe.

Health-wise, I’m perfectly fine! I wasn’t sick when I went in, so recovery was super easy. (Another girl with FAP on here, @killaaavee, had quite the unfortunate ordeal 😔 She’s the first to be diagnosed in her family.) My mom has ulcerative colitis and an inactive thyroid, but I guess ulcerative colitis isn’t genetic so I might not need to worry about it. Thyroid problems, as you well know, are definitely a common issue with our thing. And I have arthritis, which I guess is another commonality among FAP people.

I’m glad to hear that you’re cancer free now! Are you the first to be diagnosed in your family?