Religion is ruining this country!

Cancer treatment has been the same for 30+ years. There is no new way to battle breast cancer but yet everyone stamps it with something to make people think there are advancements. The treatment is the same, ask someone who has gone through it twice at different times of their lives. Why do we have all these stupid cancer runs to raise money for awarness. We are the “richest country”, the money is there, don’t let people fool you.
You show me the damn embryonic stem cells that hold the cure for my disease and other diseases out there and I don’t give a fuck where it came from. I am tired of politicians and christians ruining this fucking country. We are left to die basically because some fucking asshole is afraid he is going to “hell.” Wake up fuckers, there is no heaven and there sure as hell is no “hell”. How selfish are you? How fat do your pockets have to be for you to sleep at night? This country needs to revolt, the founding fathers would be HORRIFIED to see this country run on fucking religion. YOU BIBLE THUMPING ASSHOLES! I will never vote for anyone that doesn’t have this country progress in the medical research scientists are out there doing, and people are having treatment done in other countries and paying out the ass for. If you want us to vote for you to get rich and greedy then you take us on as your damn responsibility. Fuck you and the white house and anyone who occupies it with a shallow/greedy mindset that I am so over dealing with. This country is a joke, laugh it up.

If these are the studies going on in Asia, Russia, and everywhere else BUT here, then why the fuck are we all waiting for some damn miracle to prevent surgeons, doctors and politicians from getting rich. Our lives are some fucking game. We are the color green to you. Maybe Ron Paul is the way to go, fuck it … sure as shit is not some idiot republican or a democrat that lets politics force them to do wrong.

Enjoy these links and start a movement for Colon Cancer and FAP. Time to get something going, get angry, stop taking what all the above mentioned spoon feed you.

Stem cell treatment for IC and other diseases can be located in Cali as a “self paid trial”, but lets go back to where IC stem cell treatment started? USA? Fuck no! Australia …

PDF of study: http://cancerres.aacrjournals.org/content/64/10/3668.full.pdf

paired-drugs-kill-precancerous-colon-polyps-spare-normal-tissue

Say no to colon removal FAPulous people

I always said FUCK this disease and FUCK doctors with their one fucking response of “Remove your colon”.

Here is an article that is a study out of Russia on FAP. They basically “cured” FAP downstairs (rectum). They did a musectomy on the rectum and implanted fetal stem cells and basically regrew the epithelial cells (new mucosa). They followed the patients for 3 years and none developed a polyp nor had any signs of FAP in the rectum. Link: http://www.ncbi.nlm.nih.gov/pubmed/22268056

This link made me cry, it made me cry I gave in and had surgery. It made me cry I went against how I felt about this surgery and I wish I never had it still to this day because more can be done than just taking out a fucking colon. So fuck you medicine world.

What I have been saying and asking all along. “Why are we in the fucking dark ages?” So stand up FAPulous people and demand more shit is done. If I can have a colon grown out of stem cells and then have this treatment done. I’d open my asshole personally with a knife.

 

Working out through pain

So my pain just doesn’t stop. The glass shards feeling is here so makes me wonder if I should just go back to crossfit. I haven’t worked out in almost 2 weeks due to the minor set back. I don’t have my catheter in anymore or the leg bag but I am definitely not where I was a month ago.  I hope this is just a phase and will pass, as if I am on a roller coaster of good days and real fucking shit days. Maybe I will ride out the rest of the week and try for Monday. Maybe by some miracle I will feel better.

I at least I finally cleaned my loft. It was out of control mess. My mom offered to get a maid for me since I can’t afford it but  I sucked it up and cleaned for 4 hours. I feel a lot better since having a real messy space gets to me.

Tests

Still waiting for my barium xray to be scheduled but so far there is nothing wrong with me. Hopefully the barium will work through any kinks or adhesions and possibly open up a tightening in my small intestine. My blood work is fine and I swore my iron was low and would need an infusion again.I love how Baylor now emails you everything so you aren’t trying to chase down a doctor. I hope I don’t turn into a case that nobody can figure out what is wrong with me. That truly sucks. Also waiting to see if I will get my GI to call in a barium/contrast CT. Going on my 6th CT in like 1.5 years. Yay for radiation! sarcasm

 

The results of your recent tests are explained below:
Kidney Tests: Good -- no changes needed
Electrolytes: Good -- no changes needed
Liver Tests: Good -- no changes needed
DIABETIC TESTS: Blood Glucose (Sugar) Normal. No evidence of Diabetes
Hemoglobin A1C:
Average Glucose:
Blood Glucose: 80

Lipid Studies: Excellent
Total cholesterol: 154
Triglyceride Total: 79
LDL: 71
HDL: 67
Thyroid Function: Normal
Complete Blood Count:  Normal.

VITAMIN B12: Normal

Clamps

My leg bag and catheter I have had since Thurs was beyond disgusting. I was nervous taking my catheter out to put a new one in but was no bid deal. Smooth sailing! So since I don’t have to wear a bag I can just clamp the end of my cath and tape it that is what I did. Bag free! Wooo.

Now I can just poop like I normally do when I want to. Still hurts to wear this thing. Not comfortable but hopefully I have the Barium test done any day now and then can go back to my regular life.

Puzzled!

I don’t have pouchitis… My valve is fine…. Then WTF do I have?! My scope was perfect. I have to schedule a barium something test to see if I have obstructions but wtf is up with my pain and pouchitis symptoms I have then?! Fucking hell.

I am in a lot of pain today, sitting at work for 7 hours hurts. My ass feels like it just got ripped out all over again and the flexsig doesn’t even go in that area anymore. Ugh. This catheter hurts and this drainage bag is awful smelling. I hope my new ones come, the last I ordered don’t drain stool. I think tomorrow I will just clamp my catheter but makes me nervous something will escape at work. Give it a test run tonight. Few more days and can stop wearing this catheter.

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

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.

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.

Ostomies and YOUR carbon footprint

If you think about it. Plastic is destroying  the earth so why even get an ostomy? My tube that I use to intubate my BCIR lasts up to 6 months. That alone should be a reason to reverse. Ostomies are also just ancient medicine, I don’t care who argues that but more people need to get progressive so more idiot nurses and doctors know how to deal with continent ileostomies. GET WITH THE FUCKING TIMES PEOPLE! The internal pouch as been around since the fucking 70′s, yes THE 70′s!

Having my catheter hooked up to a drainage bag makes me realize that ostomies suck ass. Fuck having plastic stuck to your body. I rather wear my real intestines for a pouch.

Everyone says there are issues with internal ileos but let me tell you what. I have friends that are far worse than me that have jpouches and people with ostomy bags have just as many issues. There is no perfect surgery to have once the colon is removed. They all suck in the end… Nothing is as fabulous as the colon. At least I loved mine, it rocked.

So there is my soap box rant. Fuck ostomies. Oh and they STINK!

Slipped Valve

After a worthless trip to the ER last night with no help and people too afraid to stick a fucking foley in me. I left. Couldn’t intubate for over 10 hrs then amazingly got in and left. I was so backed up and thick the pockets of gas were embedded.

So went to a CIR surgeon who is with my former colorectal surgeon And he got my catheter in and hooked me up to mega bag! My valve is slipped and hopefully this will reset it. I have to wear this until Monday when I get my scope at 7 am. New surgeon I saw doesn’t think I have pouchitis, he heard the gas movement so to him it is small obstructions. Dr. Robert M. Jacobson, is a very knowledgeable surgeon here in Dallas. I ordered a leg bag because this is crazy huge. I can sling it over my shoulder! Lol I even slung it over my back and walked out of the building. Fuck it

People wanted to see intubation or videos, here it is. Welcome to my world! Just a lot longer tube! Hope this leg bag I ordered gets here tomorrow since I have a Glock shoot to work. At least my worries of having to use the bathroom all weekend are resolved lol! SO glad I have left over pain meds because having this catheter in for 4+ days hurts like hell.

Ok 2 hour update. I dumped about 1100 ML (this bag is in ML?) in 1.5 hours. I also seem to have no pouch pain. Finally I can relax and eat food. All day I have been starving since I wasn’t able to drain and didn’t want to be to full at work.

 

Baby, I have been around the world.

I am battling the worst pouchitis I have had to date. All antibiotics have stopped working. This is my private “hell”. How does one go on when sick? Music.. I had surgery to live my life since I was dying and music is my one true passion. So I present you with something to dance to and smile.

My Love