Let me introduce myself

First thing is first I never had a jpouch due to the issues I read about and knowing I would have even more issues since my whole rectum had to be removed due to a T1 tumor. In other words I had colorectal cancer. December 9, 2011 (5 months ago) I had a Proctocolectomy. Not a TOTAL colectomy (that leaves the rectum/anus in place) but a Proctocolectomy. It is annoying when a nurse in the ER even says total colectomy. Please know the difference.

In proctocolectomy, the large intestine and rectum camera are removed, leaving the lower end of the small intestine (the ileum). The doctor sews the anus closed and makes a small opening called a stoma in the skin of the lower abdomen. The surgical procedure to create the stoma (or any other artificial opening) is called an ostomy.

I also had a Cholecystectomy. That is the surgical removal of the gallbladder. All of my surgeries were done open as you can tell my my scar I sport in previous posts I have made.

There seems to be some confusion on what surgeries I have had. I think even some nurses believe there is some invisible ostomy bag hanging off me. So let me start with that.

I DO NOT WEAR A BAG!

I have a Barnett Continent Intestinal Reservoir (BCIR), an appliance-free intra-abdominal ileostomy. That means I am continent unlike someone with a jpouch, brooke ileostomy or colon that have to “go” when they have to go. I hold my shit until I feel I have to empty my BCIR. The BCIR is made out of your small intestine into a pouch that has a valve about 1 1/2 inch down your stoma that only opens with a catheter (standard is a 30french) to drain it. Please see image below for a better example. Nothing can come out or go in. The valve is a “lock”, the catheter is a “key” that is the best way to describe it. Some mucus might come out that the body naturally produces and a small band-aid over your stoma is placed to absorb that or. It is not shit/stool/ poop, but some mucus and clear liquid. Maybe a Q-tip worth is all I produce but I also DO NOT have UC. Some people with UC have other issues that can produce more mucus, like pouchitis (overgrowth of bacteria in the pouch).

BCIR
BCIR

KPOUCH
kpouch

A traditional stoma, where a person wears a bag that is outside of your body. A person with the BCIR or Kpouch has a flesh stoma. My husband can’t even see mine unless he gets on his knees and looks up. See image below. Meaning there is no stool that might leak, of course we don’t leak anyway due to our special valve that keeps us continent.

BCIR

My Stoma

My stoma sits almost in my pelvic area, it walks that fine line of pelvic and abs. It is below my belly button to the right, in the abdominal lower wall. I believe they are best in that area to prevent hernias.

I have had a vertical sleeve gasterectomy back in 2006. This is why I have a very small stomach but that so far is not related to FAP or the type of colon “replacement” surgery I had so that you can google 🙂 Hopefully I never develop short-gut syndrome. So far I am polyp free in my stomach.

Hopefully this helps people understand things. I believe more nurses and hospitals need proper education in dealing with continent ileostomies. If it needs a scope or foley you just put the thing in like you would be scoping an asshole. Not rocket science, people. Get out of the fucking dark ages and learn something.

Now to go into FAP (Familial Adenomatous Polyposis). FAP is a very serious genetic colon cancer disease that classifies you as a “high risk patient”. It may be genetic but 30% of people who have FAP are the FIRST to get it. I am the first in my family. FAP is usually from your father’s APC gene, it is a mutation of the APC gene. Just because we remove our cancerous or precancerous colons does not mean we are cured. There is no fucking cure for FAP, people. We are polyp makers. Some of us form desmoid tumors that can cause part of the body to be amputated or even worse, death. Just because a desmoid tumor is benign does not mean you are in the clear. They cause damage, they are hard to treat with chemo and they kill. Some people with FAP develop more desmoids while others never do. usually this is then called Gardner’s Syndrome (GS) but people should know FAP is FAP. You can’t have Gardner’s Syndrome and not FAP and usually GS is not even used anymore just FAP. FAP kills you by age 40 or sooner if the colon is left in. I was diagnosed at 35 with 100 polyps and stage one cancer. usually you are dead by my age or at a stage 4. Call it luck if you believe in that shit, I call it life and that is just how it is since I am not a bible thumper or believe in faith, luck, etc. It is science and fucking genetics.

Things that I form are Lypomas that are fatty cysts and can usually be removed by liposuction. I did my tailbone already that way. The reason I have some saggy skin that rests there so don’t say I have a fucking tail, I know the shit is there and it is rather old and annoying if someone points it out. Cysts are randomly in parts of my body like my upper back. I also form bone tumors. I have one in the inside of my skull and one in my knee, also believe I have a small pea size one in my jaw. The bone tumors are benign and not even worth thinking about. Been with me for life and not going anywhere so I see them as my additions. We also form other cancers, “possibly”, like Thyroid, Ovarian and the most common, Duodenal (he beginning section of the small intestine).

Extra teeth. If you have a child or you have had extra teeth that is FAP. Biggest sign of them all. So get your ass checked since the Genetic testing is not always right, there are other mutations that might not be picked up. Colonscopy is the 100% way of being diagnosed. I had 2 extra canines as a kid that were yanked. I also have impacted wisdom teeth but those don’t have to be pulled.

Eye “Freckles”. If you get your eyes checked and they say you have FAP (if they are smart they will tell you that) or seem confused and like my retarded experience that the guy told me “I had scar tissue that formed from a possible infection” I had. And I asked “what fucking infection?!” Go to a GI and get tested.

Hope that sums it up for everyone because I don’t wear a fucking bag, I have a continent reservoir and life is not easy. Don’t ask how we are doing all the time. We might have a rare disease but we aren’t dying that very minute. Guess what though? We are all dying every day and I might out live you, the person that isn’t sick or might not ever go through this or have a rare genetic disease. But do remember, colon cancer is the 2nd killer so it can happen to anyone, FAP or no FAP.

I am a crossfiter, I am an olympic weight lifter and I suck up the pain and discomfort of obstructions I have in my small intestine and valve pain and do squats or a fucking burpee. No excuses… unless you have a foreign object in you like a catheter for a slipped valve lol.

Be a bad ass no matter what and tell people to fuck off in the process.

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3 thoughts on “Let me introduce myself

  1. Isn’t it exhausting enough to have this unique, rare condition- explain the differences between “cancers” and genetics and tumors and how we poop? Then we actually have to LIVE and function with it…

    I am now pointing people to this blog to explain for me…. thank you, Vanessa. Plain language- straight shooter.

    Do you tell people that through a mysterious turn of events, your anus is now at your bellybutton? I pee out of my back! Special!

  2. wow sister..first and foremost, THANK you, for sharing all this.. I learned a TON just from this post~.. more importantly..my DEEPEST RESPECT to you.. so MUCH respect.., not only for the obvious reason for dealing with it like the warrior you are, but then to be SO proactive in continually informing yourself.. Knowledge truly is power.. and YOU have it ..girl..it IS sad that YOU have to EDUCATE THE HEALTH CARE PROFESSIONALS, but again, better that you DO know, and in this crazy process that you have the grip on it..I am always directing the most positive energy out to you my friend.. I am thinking about you, as I know you have the appointment today.. I look forward to some good news.
    Namaste~

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