I like tubes

Well I guess I reduced waste by using tubes to shit instead of piles of toilet paper. If I was single I think the toilet paper roll would last a week  or more…

I am going to credit Xifaxan for this new progress. For the first time since I had surgery just over 4.5 months ago, it did not hurt to intubate. I know everyone says it doesn’t hurt to intubate with no nerve endings in the small intestine/stoma but mine hurts. It hurts usually every time I stick my tube in. Either the stoma, valve and pouch hurt. I just intubated/irrigated for the night and I didn’t even feel the fucker go in. At first It thought my stoma just closed up since I didn’t feel the tip of it even enter and though that it was stuck then it went in and still felt nothing. Maybe it is pouchitis related after all, all the pain I had. I cut the inside of my stoma with a catheter that kinked and bled for a bit and it was just irritated over and over again since well I can’t avoid using my stoma. That as well didn’t hurt. See how the weekend goes…

Complicated Case

My GI, who rocks, called me tonight. She told me about an internal medicine MD that she works closely with and sends all her Chrons and UC patients to. Sine I am such a complicated case I keep going through Internal MDs like water. Nobody has patience or takes me seriously. Best one I had thought my surgery wasn’t that big of a deal to still be on pain meds 2 months post op. What a douche. Some doctors should not be in business.

Xiafican (sp) has been helping since I went on it 2 days ago. World of difference like the other meds were so hopefully this will buy me another month of good days. I have to beat this damn disease, pouch and pouchitis. So I ate a cookie (got to take advantage of not being able to gain weight) at Central Market while buying all healthy things like quality liquid Norwegian fish oil, Vega sports drink electrolyte mix and Wheat grass. Some how my wheat grass didn’t make the bag. BOOOOO! I am a sicko I know, I love wheat grass with a sickness! I tried this new NUUN brand and it is definitely better tasting than the previous standard NUUN I tried but the orange Vitalyte is still be far the best. I need to get more electrolytes in or who knows when I will make it back to Crossift. My leg cramps now are just bad and my leg pain is pretty high in general with this stupid disease causing my muscles to once again not relax.

Been working on some branding for restaurants and it is some of the most fun I have had designing in awhile. It is nice to not deal with idiot Creative Directors or senior ADs that think they are amazing when nobody really usually gets how they land the jobs they do. I have been an AD/CD for many years now and I would never have the attitude most do.

I am addicted to the biggest loser now that Bob Harper rocks life as RX socks and rogue fitness must now be a sponsor. They should have a whole show on people with disabilities or ostomies, cancer survivors. I would like to see a tailored show to people who have electrolyte imbalances and legs that cramp, no colons, etc. That would be neat.

Can’t a girl just get a break???

You would think that my blog would have moved over to arsetopia.com by now but of course there is some fuck up with my hosting. First time I have had issues with godaddy. Hopefully get it worked out by next week so I can actually design the thing better with more control over my blog. Juggling branding and design lately with my own designs are always a challenge. Maybe I should pay myself, might kick my arse into gear!

 

So what’s the happs? So called “pouchitis” has hit me once again. If that is what it even is. My GI thinks it is possible I don’t even have pouchitis, that it might be something else. Counting down the days to my scope in June. I called to move it up even though it would be before my 6 month surgery post up but I am desperate for some answers. I am now on my 4th antibiotic since Flagyl isn’t doing the trick. It is the lowest of them all but who knows, maybe it will help for awhile. Of course even if I had c-diff that too would be treated with antibiotics so not sure what else is actually wrong. Maybe strictures… 5 more weeks of suffering.

 

I try not to eat too much during the day since the gas is so bad and so loud with pouchitis that you can hear it across the room and who wants people at your temp job to wonder what is up with your guts. The life of a freelancer. Little cash and no clue what tomorrow will bring.

 

My “pouchitis” (feel like I should name it), is a real pain in the gut. Not only does it cause pain, trouble intubating, bleeding, fatigue from all the meds. It is painful with pops of gas. It feels like someone is kicking my spine and gurgling and pressure are all along where my asshole once was. My pouch pops with gas that you can see it actually move, as if there is an alien in there kicking me. So if you can see it and hear it just wonder what it is like to live with it. It is horrible, enough to make you want to check into a hospital and be under care forever. When this pouch works it works and there are many benefits to it. I can see how people with UC love getting the BCIR. I on the other hand never had UC so I can not relate. This wasn’t something I wanted, this wasn’t a happy surgery like it is for many, this is the shittiest quality of life I have had. Since I have Interstitial Cystitis when I do have this much gas it moves my bladder around like an evil stepsister that it is, causing me even more discomfort. My bladder is still way better not having a colon but it still hurts.

I never imagined life with chronic pain past bladder issues. I never thought it could get much worse. I still get up in the morning and hope that today will be a better day. What else can a person do? It shouldn’t have to be this hard.

 

Today reached 90 degrees in Dallas. My legs are cramping from lack of fluid intake or not enough. They woke me up all night along with the gas movement and pain. I hope I can make it through this hot summer without ER trips for hydration or passing out from heat. 

 

I miss sleeping peacefully.

This is my view during the day. Thought I would share something beautiful. The architecture is breathtaking and so is the greenery.

If my pouch can make it here, it can make it anywhere!

 

So I took a contract job in NYC. Ends tomorrow but it is nice to know I can work if I have to. I only had one real flare or pouch issue and that was from eating grilled cheese and drinking iced tea. Otherwise I am ok. I am sticking to one a day Flagyl and alternate it with VSL #3 (medical grade probiotic. So they say you can’t drink on Flagyl or you will violently throw up. I tested this with a glass of wine at the Beirgarden at the Standard in NYC. Check out the view from the 18th floor! Felt very Mad Men…

 

 

I am booked to fly back to Dallas on my downtime unless something happens and I extend my stay. Good cheap options for hostels and such so that is good to know when I return. I haven’t commited to an apartment yet since I still have my loft in Dallas and we are so broke and drowning  in debt I am trying to play catch up. Hopefully another job happens and is full time. This freelance bouncing around I am really over with.

Arsetopia

I finally bought a domain to move my blog over and leave the restricted hosting on WP. so please update bookmarks to http://arsetopia.com

 

I hope to have things moved over in the next week or 2

Bo Shen, M.D. – Gastroenterology and Hepatology, Cleveland Clinic

This is the best of the best if you need a Gastro that deals mainly with pouchitis. I think mine is semi under control now back on Omnicef and yogurt 2 times a day but if my scope on the 7th reveals pouchitis I might give him a try.

Bo Shen, M.D. – Gastroenterology and Hepatology, Cleveland Clinic.

New theme(s)

Playing around with themes for the blog so don’t be shocked if it looks different. I might do this a few times

Leave your religion at the front door

Neil deGrasse Tyson: Doctors

It always amazes me how god is forced down your throat when you are sick. It is as if people see a moment of weakness and try to get you in on the cult. I once had some texan jack ass tell me that an Atheist can not fight cancer without god. Now, I for one think that is the most ridiculous thing someone could say to a cancer patient. Funny, last time I checked I am still here and I credit myself and the surgeon that cut it out. There is no life/death sentence some “man in the sky” created for me.

So in short.. Neil has summed up this all in a very intelligent way.

 

 

This is also not up for debate. I am over debating religion with people. I don’t want to hear it so don’t bother posting about it unless you have the same point of view. It is a long tired argument and has no place here on my blog.

Antibiotic to probiotic

My new GI specialist (only deals with rare GI diseases) called me today to see what my issues are. I can’t afford the 400 dollar every 2 week VSL#3 that is a probiotic, so she has free samples she will give me. Also told me that Walmart has it less expensive since they have a deal with the manufacturer. Going off Flagyl in 3 days to try it out.

I might not even have pouchitis. My disease sucks so we will see what is going on in there June 7 when I have my pouch and stomach scoped. June is so far away. Need answers for my suffering.

Just wish I had the energy to fight Tricare over VSL#3. They claim it is a food so won’t cover any of it. Bah!

I am not a ribbon

I guess there are 2 types of cancer patients out there. Ones that wear the rubber wrist bands and define their cancer with a color ribbon then there are those that don’t. I understand people wanting to educate others about their cancer or a loved one’s cancer. But I am not a fucking ribbon. I do not identify with the colors. Cancer is fucking cancer and guess what? It sucks! Nobody has a more important cancer and I am sure there are many cancers that aren’t common enough to even own a color. How is that for an insult to someone who is most likely more annoyed by it all than myself.

 

The wear pink crap always drives me nuts. We are well aware of breast cancer. Funny how you mention colon cancer and people think you are full of shit or feel uncomfortable because you are basically talking about your shit hole. I had one of my cancer shirts on and it is amazing how many idiots are out there and what type of questions they ask. It is the people like that that make me want to slap them with the back of my hand and ask WTF?! One guy did not take me seriously when he asked about my shirt, he also asked if my shirt was a joke. Perhaps he didn’t think to read the design, perhaps he was to busy just being a douche bag with an IQ of -100. Think before you say stupid shit people, seriously!

 

Colon cancer is the #2 killer out there and it can happen to anyone. FAP might be rare or so they say but anyone can get cancer of any kind. I don’t need a ribbon, I don’t need my family to rock a blue ribbon either. I rather people also not use the word FAP to talk about jerking off. It is a pretty sad thing to even throw around on twitter when the disease kills. Almost as bad as some jack ass saying “double tap” when they have no clue what that means. So this is my weekend rant. I will make some new shirts this week to basically follow all this being said in this entry. I might be cancer free, for now… I just get so damn annoyed with the general public sometimes.

I’m a polyp farmer, motherfucker!

(got to say it with like the movie