Life

Oh where to start and end! Ended up in the ER 2 weeks ago for an abscess that turned into the size of a golf ball. I ignored it because I was lead to believe it was just a cyst type of tumor related to FAP and that was that. Well wrong. I have 2 abscesses. One can’t be found just yet but the huge one was clear as day so it was cut and cleaned. I have had such bad pain since so not sure if I formed cellulitus or some MRSA. I have left over Vanco from treating the C.diff so I just took some more in case I have an infection. I have a follow up appointment that was supposed to be for last Friday but got moved to this Friday. I am sucking down pain killers all day long, pain is everywhere. I am also having my case reviewed by Dr. Remzi in Cleveland Clinic to see if my pouch can be moved and have my valve and stoma fixed. It is such major surgery all over again but my quality of life is very poor.

Jarrad and I are going to be putting in a 30 day notice since we just can’t pay rent anymore. And if we do have any money come in I have to figure out if I need to pay rent or health insurance and car, phone payment. So I thought about just packing up what I can and sleep in my car. Basically be homeless until I hear if we get Govt. Housing. How sad is that? I come from a high-class family, I grew up with a beach in my back yard in one of Florida’s prime neighborhoods and I will be homeless. Main reason I am staying in this area and not moving in with a relative is I can’t travel to get to my doctors. This has to be just a few month temporary. For now I am looking into camp grounds. Most are just 14 days but hey it is better than living in a parking lot!

Since Jarrad has 30% VA disability hopefully getting housing when our number is called won’t be a pain. Sad.. I was making 6 figures once and now I am broke. I hate this disease and this economy.

Weird and scarey times.

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You give me fever

I have been feverish all day and feel like the aches are all over my body. Go from hot to cold chills. The huge mass in my butt cheek has turned into a throbbing big huge ball. I am tying to get into Hopkins because there is ONLY ONE DAMN colorectal surgeon as Georgetown and he is booked until May. My GI at Georgetown I also want to fire. I never called a doctor so much to not get any help. And he is the chief of the damn department and well known, even Shen says how excellent he is. I feel the health care in the VA/DC area is horrible. I am appalled by the crap I have dealt with here.

I am jobless, funny how the minute the guy I worked for at USA Today said I looked unhappy. After I briefly explained I haven’t been feeling good, I have a serious disease he decided to cut my contract. I mean, it is ok because it was a sweat shop where you are just a drone pushing pixels and he is Just another tool in the tool box he is. I am interviewing for a job tomorrow morning and Friday afternoon. One I really hope I get so I want to get this fever and lump under control. I have to work for now, my business funds itself but not enough to live off of. I hate having that fear of being homeless. Dire straights for sure right now and living here is not cheap.

BCIR vs. Kpouch – Pouchitis and C.diff. The truth as I know it today.

Lying. Sometimes I don’t give two shits who lies because everyone does it. We are human. What I do not forgive or forget is when someone lies to you about something so serious about your health and well being.
you research your heart out when you get diagnosed, with anything, not just cancer. You have such a small window to make a decision with every minute that passes time removed from your life, or possibly being to late. People telling you “Act now” you are already weird for being so old with this disease and not a stage 3 or 4. Or that nobody knows if the cancer is past a stage 2 until they remove your colon. FAP is scary enough but I always needed to understand what was happening and make the most informed decision, even if you die before it happens.
I knew I wasn’t going to live with an ostomy bag. I even changed my paperwork and had the surgeon sign it. NO PERMANENT ILEOSTOMY ALLOWED IF BCIR CAN NOT BE MADE. I was picking dying of cancer instead. I don’t care what people say to this, this is my body, I am allowed to do what the hell I want with it. I suffered a great deal this year, trying to figure out why everyone with a continent ileostomy is doing so fucking great compared to me. I have been to the Cleveland Clinic 2 times, almost going bankrupt in the process. I have been to countless doctors in Dallas at Baylor and Medical City. I counted on every word my surgeon’s office said to me, trying to make sense of this madness. I asked my husband to kill me flat out a few time in crying fits. I have lived some very dark fucking times from a torture device that has been inside me. But it gets better over time when the body gets used to a new organ that is basically a blockage created. I read people’s blogs and message board posts saying how over the years it gets better. People who love this thing. I could not relate, not yet at least. But the times I wore a leg bag with a slipped valve I knew I had to make this work, no way am I shitting outside of my body in a bag, ever.
I booked flights to the Palms for pouch scopes that never happend. 2 times. Once my father bought me a ticket with his last Sky Miles, the second my grandmother (who has paid for most of my travels to hospitals) paid my flight. The first time, if you recall I never saw anyone and the GI took the day off the next day to go fucking golfing. I never had pain management visit me. I was told it would be maybe 2-3 days when I had to  get back on a flight 4 hours away in South Florida from St Pete to go home. I had no money to rebook or change a date. I was broke, poor and sick. I had no job, no way to pay bills and beyond poverty.  I was still on my surgeon’s side and what everyone told me at the palms. “You have pouchitis and possible ulcers, get scoped somewhere and send us results.” I had 2 pouch scopes and everything was stellar. People with FAP don’t even get pouchitis so even the Palms were trying to wrap their heads around this.” Oh maybe the lighting is weird on the photos and we just can’t see what is going on”. I just kept going along with this all, I mean they were trying to figure my case out, right?! WRONG!
Fast forward to the worst I have been in my life. Drove 5.5 hours to Cleveland Clinic to see one of the best GIs, Bo Shen. The man has scoped over 200 BCIRS, that alone has to tell you something.  He explained to me that the extreme violent gas and movement I have is from the small bowel that is wrapped around the valve. The one main thing that makes the BCIR different than that Kpouch they preform. And here It thought this would save me from future surgery, not having a slipped valve, what the BCIR is supposed to rule out by adding this step. That one thing is making my life worse. And who has time for more surgery to reconstruct a valve? With FAP every time we get cut open we risk having desmoids form, desmoids kill, they are almost worse than cancer.  One reason I went with the surgeon I picked vs. the ones in Dallas that wanted this to be a 2-3 step procedure when a continent ileostomy in general should be one. I wanted one surgery and move the fuck on with my life.
I was scoped this past friday by Bo Shen after my guts were liquifying everything I ate, gas felt like it was ripping my body apart, intubating felt like intense cramps and acid burning my tissue, organs and muscle. I was losing maybe 1 oz of blood a day. After hearing the fucking word from the Palms of Pasedena about fucking pouchitis one more god damn time. He saw me 5 hrs after my scope at my follow up and said. There is NOTHING wrong with the pouch. You never had pouchitiis and if anyone tells you you do, they are wrong. You have FAP, not Chron’s or UC, those people get pouchitis. So with that being said I shit in a cup and off it went for C.diff testing and me on my way home. Thinking I had to schedule surgery to remove this pouch, I could not live this way. On my way home around 6pm on Saturday I got an email saying ” You know what Vanessa, it is POSITIVE!” I tested positive for C. difficile. A deadly infection that has killed over 30k people a year and is an epidemic right now. But how does one get c.diff when on antibiotics? I did my research to find out the 3 antibiotics given this whole year for this fucking “pouchitis” cause C.diff.
Now here comes the shit. Something so rare with no colon I was told by her and so rare to ever get on antibiotics about 9 months ago when they were trying to figure out what was wrong with me. A girl, who had surgery when I did, and has become a friend. Has been just as sick, actually worse since she has UC. She was about to be put on Cancer meds to see it would reboot her system, her doctors saying she now had Chron’s and mis diagnosed  they were just as puzzled. After her Cleveland Clinic appointment, just 4 days after me, was also diagnoed with C.diff. “STOP TAKING CIPRO ASAP” her email said. The drugs we are fed are killing us basically.
My mother after hearing this got into her political, advocate way. And called Susan Kay at the Palms. My mom speaks loud only due to being on a cell phone. My mother never yells. Far to educated and refined, with 2 masters degrees and from Chicago 😉 We are an upper class family, we debate loudly, but don’t cross us we will not tolerate your shit. She hung up on my mother the minute my mom asked her is she thought she was at fault for my well being. After my mother politely called her back and said “The call must have dropped” (knowing she hung up on her after being yelled at for asking a simple question) She yelled some more, my mother asked her to calm her voice there was no need to get heated. Susan Kay said I wanted them to change their policy and that wasn’t happening. They once tested for C.Diff but stopped since studies showed it isn’t common to get when a colon is gone. Bulllshit. Cleveland Clinic sees this all the time, they also see C.diff form in just the valve. What medical sham is this shit ? No wonder they have no medical journals. The CC doesn’t even consider the BCIR “real”. And now I know why. The Palms of Pasedena is a for profit hospital. My aunt just left the ER for something, not the point, point is on her discharge paper it said TESTED FOR C.DIFF. She had nothing wrong with her bowels, it is the hospitals responsibility to test since that is where it breeds.
I work in advertisement so I get that it goes a long way now. What I don’t get is how someone can fuck up repeatedly for the sake of other’s health and possibly kill them. ” In retrospect I should have ordered a C.diff test for Vanessa and ashamed of this hospital the 2 times she was supposed to be seen” she finally admitted. Susan Kay I doubt has any real medical experience besides being a spokeswoman for the BCIR. I now have to look into another surgery, at Cleveland Clinic to possibly get a new valve, to improve my quality of life. I will end this here. But always fight your doctors, it is your life and happiness at hand.

C.diff

Things I have heard or all I really knew ARE WRONG!

With my hell of a god damn year. And constant roation of Cipro, Omnicef and the latest Suprax. How would anyone with no colon and on antbiotics get C.Diff. Yes that is what I was told. Then another GI I had said if I never had C.diff with a colon then it would be highly unlikely I would have it now. ERRR WRONG! All bullshit. Those 3 antibiotics cause Cdiff to grow basically. I mentioned this to Bo Shen at Cleveland Clinic (#4 GI in the world I think he ranks) and he laughed, said he sees it a lot , people with no colons having it and sometimes just the valve itself having cdiff.  So I start oral liquid Vanco once I get a compound pharmacy to make it, CVS is figuring that out for me. And hopefully this hell I have had forEVER gets under control.

 

I never had pouchitis but yet I have been swallowing antibiotics for it. If scopes continue to say you are fine then demand shit to get done the right way. 

Getting my rear in gear or shall I say guts in check

So first comes first :Get your rear in gear: made me their face of blue for March 9th. I knew it was coming up since I talked to them back and forth for a few weeks prior. Anyway, here is the link. Not much is different from my intro to this blog with some added notes. http://www.getyourrearingearblog.com/featured-articles/faces-of-blue-vanessa-truog

I feel like reading that makes it sound easy. Like I got the bad stuff out and I am good to go. The hell is what you go through AFTER cancer. Cancer was the easy part! Bone tumors, polyps, more polyps, more tumors, more dysplasia, cysts, desmoids, bleeding guts, pouchitis, cdiff, you name it, pure hell.

I am still sick. I will be really shocked if my iron and blood is normal with an upcoming tests Friday at Cleveland Clinic. I bleed so much now and my pouch feels like it is battery acid. My stomach cramps are really bad. Shen thinks I have cdiff, I hope someone sees something because I am very sick and I am tired of doctors not helping me whenever I have an issue because everything “looks” normal. I am doubled over in pain, my valve twists and turns and it feels like acid is literally burning the inside of my guts. It smells like a small child died inside me and I have blood in my tube and running down my legs when I take a shit. I even have pools of blood and mucus in my stoma covers. OBVIOUSLY there is something wrong here.

In case it was cdiff I took some flagyl for a day then thought I can’t do this, I can’t mask what I have so this scope shows clean again so decided to not take any more. I refuse to leave Cleveland Clinic until I am diagnosed, fixed and don’t feel like the walking dead. I just hope it is nothing so severe they say my pouch has to go. I can’t imagine having another one made. I can’t afford the time off or do I have the mental stability to go through another 30 day hospital stay with 6 months to a year to get back on my feet.

Maybe I have cancer, but wouldn’t my blood work show that ? One would assume.

Also this time change shit. I bitch about it every year but this really needs to fucking stop. I am dead tired, I sleep maybe 4-5 hours  a night. It doesn’t help being sick. I doubt stupid politicians give a fuck that it wrecks lives.

I can’t work out. I tried to do a snatch in my living room thinking I can do the CF 13.1 open. Yea the bar almost fell on my head, no energy or strength. I did maybe 10 33 pound push presses and called it a day. My arms and body hurt everywhere. My spine feels like my intestines grew thousand of rose thorns and leeched onto my rib cage, lungs, kidney, spine and soft tissue.

2.5 more days of work then some magic in Cleveland hopefully happens. I don’t really count the days them selves since the road trip alone means I am almost there. It is so hard to work when life is this rough. But ya got to pay bills!

My guts are screaming!

Or should I say my gutless guts are screaming since so little seems to be left. I am off to Cleveland Clinic once again next week to finally have Bo Shen scope me. My surgeon put me on Suprax and a drug for candida (yeast overgrowth) since we just have no idea if I have pouchitis, candida etc. I was great for about a week and now I am the WORST I have ever been. Something is wrong, I just hope he can find out because it is unbearable.  My food rips through my guts the minute I swallow. Gas is nothing like what you get with a colon. For me it feels like acid is churning inside me, it rips through every part of my guts and the pain is horrible and you just can’t relate unless you have it.  So I am off all antibiotics and other meds for yeast so if something is going on they won’t mask that in the scope. My valve feels like it is ready to pop the pressure is so bad. I double over with pain and try to move it away from my stoma so I get relief. You can hear my guts rumble and it may be funny to some people it is torture for people like me.  So I am on Norco to help with the pain and to slow my guts down. I hate the stuff. I have bottles of Norco and Oxycodone that are even expired because I just don’t like being on pain medicine. I want to be normal or close to it. My pouch feels like it is a cactus inside me. My small bowel is so hyperactive it kicks my spine around.

I have had a knot that appears on and off that I thought was a Desmoid but back in Dallas my favorite Colo-rectal Oncologist said it wasn’t because it did not move around and my scan didn’t pick it up. Here are Georgetown when I saw my new GI I mentioned being in the ER recently due to a possible stomach bug and then this knot was back in my ribcage area, hurt, food wasn’t passing easily and liquid I drank gurgled back up. So I had a cat scan and it showed no blockage. Saturday I had this feeling come back in my rib cage and it was intense to where I wanted to drive to Georgetown Hospital and have my GI paged. I just decided to wait until I see Shen next week, I am so tired of sitting in ERs to get nothing accomplished. But I know something is now very wrong. Food is going through me so fast. I have cleaned up my diet as strict as the Candida diet is. I have no sugar I am consuming or Splenda. I sucked it up and started to use Truvia (Stevia) only sweetener approved on Candida.  So it can’t be diet related because between juicing and not eating out almost everything I consume is whole and not processed. So there has to be something else going on. Maybe some large polyps in my Duodenum again or adhesions or worse. I can tell there is a major problem so if someone tells me they can’t see anything, even coming from Shen I am going to flip out. I can not live like this and I have no fucking options. There is nothing else for me, I can’t take out my whole digestive tract…. 

My mother is stressing out that my disease is progressing. I guess even my own family doesn’t get my disease lol Bad enough none of my friends do, they think it is a diet related thing or I just had cancer now I am better. Erhhh WRONG. There is no remission for FAP, there is no cure there is nothing one can do to make this disease better or worse. Diet is only there to help bacteria or yeast overgrowth , nothing to do with FAP itself just your GI issues you have from a small bowel acting like a large bowel. 

I picture my stomach being carpeted with polyps as I type this. I have yet to get one in the actual gut but something is not right. My ulcers in my esophagus cleared up with previcid since that was on the verge of being cancerous so it can’t be related to that. I even refilled my script in case it was an acid reflux thing but this is far beyond that at this point.

I feel bad for my family more than myself. I just live in absolute torture but they think it is something major and I might be dying. My mom might have grown 50 more grey hairs in a day. My husband I feel bad for, he sees me at my worst and it is like being bipolar. I smile and make jokes so he doesn’t feel like he is always with someone who is miserable and crying through out the day all the time. Trying to make things normal, as normal as I can.

I am glad I get to go to Cleveland again. I loved walking around that city. Last time it made me feel so much better. That is when I went home and packed it up to move to the DC Metro area. And here I am, living in a suburb just like I did in stupid Dallas. I need a walkable city. When I am better I am going to force myself to metro it into the district more often. If I stay in Virginia all the time I will go crazy.

Failure is always an option

Even if you don’t like MMA or anything related to a contact sport. What Chael Sonnen says here can really apply to anything in life. And it sits deep in me on many levels. Mainly because we have to fight every damn day with a disease like F.A.P.

When you live in such chronic pain daily it is different from someone that has a heart disease and might die at any moment but doesn’t live in pain, so to them it isn’t that big of a deal. The number of  suicide people with IC alone have been estimated to think about is every 30 seconds a day.  Of course most people keep trucking along because we don’t want to die but the thought of no pain is the kicker.

We make pros and cons of how life will be or how it could have ended. 2 years to live they said I had and I would be on my last year now in Australia or Fiji (didn’t decide where to live) waiting for the cancer to kill me, slowly and horribly I am sure. Scopes, cutting out tumors, cancer, polyps. When is enough enough? Why do I have to keep fucking getting scopes? To go every day with the insane pain my my guts. Or where the 20 pound pouch that feels like it is going to fall out of my non-existent asshole makes life worth  living. I believe if you have kids it is a different story, you want to live for them. I on the other hand, being an only child, had surgery mainly for my mom. She asked me today if I had surgery because of her and I said mainly yes. I am sure a part of me had no idea how bad life was going to suck after having a colon removed that I decided to give it a try. I knew deep down I was going to regret it. I remember waiting to go into surgery balling my eyes out, and people just said “hey, you are taking out what is killing you.” I saw it as dying right then and there. I should have gotten off that fucking operating table when I felt the urge. I was so dead set on it that I made my surgeon change the surgical waiver (I have the photo on my phone actually still) that did not give him the permission to give me a permanent ilesotomy if the BCIR was not possible. He was so mad at me because I was picking death and tried to talk me out of it. I refused to live with a bag and I refuse it now. I will always pick death over it. Yea yea yea all of you ostomates can come here and bitch at me and tell me how grand life is with it. Well fuck you and your opinion, I have  my own just like everyone has an asshole, well some of us at least 😉

So sitting at Georgetown university, when my new GI said to call Monday to book my next upper scope. I nodded and took the business card and said SURE. Fuck that I just had a damn scope and my guts hurt. I am so done with scopes. That Monday was over a week ago so shows where my taking care of my health really sits with me.

I am a polyp farmer motherfucker

So I have a shirt I made when I had cancer that says “Lift Heavy. Fear nothing.” I used to lift heavy weight, now I just feel like a heavy weight. My guts weigh me down and hurt. I can’t eat salads or veggies and with someone who has had 60% of a stomach removed and no colon and some small intestine left I am clueless why I gain weight and can’t lose anything. You would think I eat big macs by the second or roid up and eat 5k in calories a day when I really eat maybe 800, 500 on a bad day and yes I know some people will say maybe you aren’t eating enough calories. Well EHHHH I tried that as well. I would eat normal meals to prevent strictures from forming in my guts. It is frustrating and it just adds  onto the list of cons in life. My deadlift is 155 pounds, I can’t run without my legs wanting to give out from extreme muscle pain. My crossfit numbers fucking suck and my brain is full of negative shit. So maybe if I just say no more to this disease and let all that weight fall off my shoulders I can stop going 200 miles a minute and breathe. If I have cancer right now what can I really do about it? nothing so maybe life isn’t meant to live fighting the fight every damn day but looking back and realizing that it was a good one I lived and letting things just be the way they are. So on that note I want bacon wrapped cigarettes and bourbon every hour.

I have 2 incurable diseases and I smile every day like nothing bothers me when in reality the only good thing to a scope is the propofol. Michael Jackson was onto something when he abused that stuff. No pain, no worries.

Skip a Beat

Image

I hate wearing the color blue and since blue is my color for IC and Colon Cancer/Rare Disease I dyed my hair instead. Then I remember I am 36 and way to old to be rocking blue hair. Well, I also forgot that the shit runs down your face when you sweat and how am I working out with blue face? Anyway, it was hot for a weekend. I might do it again, sometime.

So this past week was rough and this weekend was pretty dark. DARK I tell ya. Sometimes I wonder how much the body can physically take. Yes I am sure the mind plays some part to survival but only so far. I also don’t get how when you say you think of dying people assume you mean suicide. Look if I was suicidal I would have been fucking dead A LONG TIME AGO! someone with IC alone I believe thinks of dying or suicide every 30 seconds of the day. I mention with my disease and pain that I am just waiting to die. This doesn’t mean I am going to do it, to be clear. I am just existing for the most part and this weekend was a good example of that. Walking through the WFM parking lot, my guts felt like they were going to push through my piss hole. Literally held my guts in as I shopped. I think the papaya enzyme I started taking was making me flare. I will see how tomorrow is and not take them. It is always a guessing game when you eat or drink something new. Have to play the guessing game to what fucks your insides up.  The knot in my gut where food hangs out is freaking me out. Your heartbeat speeds up and feels like it has to work more and sometimes has palpitations. Especially if I have gas then it skips a beat. So yes I wonder when the body gives out. Just tanks, checks out. Sometimes I go to bed at night and wonder if I am waking up in the morning. Then that feeling goes away for a bit. It is a freaky thing though. People do die in their sleep.

 

But again I will say this is not a suicidal post this is a post about dying and living. It is sort of like the idots out there that think if you own guns you are going to flip your lid and shoot someone. Same shit, own guns don’t kill people and def never kill myself. This is a post about living with chronic pain and the mind fuck you live daily. I live every day though because I want to and think that this pain will eventually be worth it in the end.

Wrap that kale around your head and jump off a cucumber

People that bitch about eating greens or any veggie in general. I want to walk up to them and smack them in the face and say “DO YOU KNOW WHAT I WOULD GIVE TO EAT THAT SHIT!” People take things for granted and then bitch they don’t like eating something. One day you might not be able to eat the things you once loved. Maybe then you will get it. Or not. Depends on how selfish and clueless you are.

I ate a salad and some devil substance called couscous and quinoa. You would think this being the third time eating quinoa and the fact the last 2 times almost killed me. no I am not bullshitting. I thought my guts were backing up into my heart, I wold have learned my lesson. Nope I keep thinking by some fucking miracle my pouch will start to digest things better like it has with proteins and some other items.

I started to have a lot of pain and extreme contraction like spasms and would ease up when gas passed. So my surgeon though I might have a small partial bowel obstruction and mentioned drinking fluids. Day 4 of fluids and being in an absolute nightmare I headed to North Virginias BEST Voted hospital. Inova Fairfax. now if this was my beloved Baylor in Dallas or Cleveland Clinic in OH I would have had no bullshit thrown at me. First they asked me some questions about symptoms and then drew some bood for testing and hooked me up to an IV to get fluids, zofran and here is the kicker DELAUDID! Yes give me the hardest drug out there, who gives a fuck how I drive my car home. So since my blood work looked fabulous they saw no need for imaging and discharged me with “abdominal pain and stomach virus.” Never mind that I have a knot in my left side and burp up water or juice when I drink something. It feels like I have razor blades going through my whole digestive tract and someone keeps blowing everything up like a inflatable boat. And that I have 2 hernias, one a hiatal that can cause an obstruction. I am just floored how bad health care is so far that I have experienced.

this one med student was asking all about my disease and then the stupid came out in her and she stared asking “Well how do you cope with all of this?” I just looked at her with the ‘are you fucking kidding me, bitch’ face and said “I live my life every day. Somethings you are born with you just don’t get to fucking keep and you move on.

When did med students become shrinks?? So uncalled for. I should have just said, sob for about 3 hours a day, feel like pulling my hair out in fits. Stress about every scope I get and what new cancer might I have today and why do my guts hate me so. Or how am I going to work tomorrow being this sick.  yea come live my life little girl. You wouldn’t know what to do with my mess. Hell I barely do. But don’t ask someone how they cope. We cope by lving. We fight every fucking day and not to hear some little girl ask about getting along because we might as well just be dying. But we are dying every day we are alive. Sick or not sick. Every day you live is one foot closer to being in the ground.

So I see this GI Friday and if he doesn’t fucking help me I am going back to Cleveland Clinic. Fuck this bullshit.

Stuff and things

Am I the only one that is jealous over people in wheel chairs? For me I am jealous because if it was me in their place maybe I wouldn’t feel the pain my pouch causes, the nerves that are wrecked that control my bladder. Just the movement in my small intestine. Yes, I can safely say I am jealous over people in chairs.

I will never understand other people’s illnesses or anything actually that I have just not experienced. What I wish I could do is get over the phantom “limb” rectum syndrome. I watched an episode of Grey’s Anatomy and it was about phantom limb and she felt like she was losing her mind, night terrors, pain, etc. Same shit but mine isn’t a limb. I lost a long ass tube and the exit that goes with it. Having a barbie butt (asshole sewn) is really not fun. I don’t give a fuck who loves it, they are lying. When you squat, stretch, etc. You have that feeling that “HEY YOUR ASS IS SEWN SHUT, NO STRETCH.”

Someone messaged me on FB who is recovering in the Palms after getting their BCIR and asked if I had certain things going on down there like sores, or pimples I believe. I had to think back to last year when I had this surgery. I remember after 20 days you are allowed to shower. That is the first time I ever washed my ass basically. At that time it was like a drawstring bag. Only way I can really describe it. Puffed out and just what you picture is what I had. Now that area is just a lump. Sort of like a corset is sewn shut. 

First time I took a shower and touched at non-rectum area I almost passed out. A Nurse blew it off as I just hadn’t showered in awhile and the motions blah blah blah. No, I know my body and I pretty much almost passed out in the shower and had to sit on the stool that was provided really quick. The constant dreams I have of stupid stuff like taking a shit like a normal person or farting really mentally fucks with you. I get flutters in that area when I have gas in my pouch. If my pouch is super full it feels like I have to take a shit like I have a colon. A lot of ostomates say years out they have this and the only relief they get is from sitting on the toilet and pushing like you are taking a shit.

I am not sure what other people who experience war and have PTSD go through but my PTSD is really bad. My original PTSD was from the major car accident I had, reason my road rage is nuts and I drive like a rally car race driver in a saloooon. (Yes Top Gear addict here). I need to do yoga and rolfing. I think the yoga part makes me weirded out. My guts can be REALLY loud and my torso is tight and hurts so thinking of yoga just makes me cringe. I have been talking about Yoga for years now, losing a colon isn’t anything new.

Other than all that shit. I am going to the Rare disease conference and lobby on Capitol Hill. Signed up. I want to do the NIH open house but I get paid hourly and losing the days as is I want to take will break my wallet.
 
Tomorrow I am heading to Georgetown Lambardi center to meet with a breast oncologist. I have a new lump. YAY! I am hoping it is the same calcification that NYC cancer center swore was cancer and biopsied me twice and was just that, calcification from surgery when I chopped my boobs down 😉 My disease doesn’t cause breast cancer and I am not in menopause so it isn’t likely it is cancer but since I am considered “high risk” they won’t take chances and got me in the next day to see a nurse practitioner.  Driving into DC is going to blow! Leaving at 7:30 am for a 8:45 appointment.