2nd Scope Monday: duadenum

It turns out my 2nd upper scope in 2 weeks will be Monday and then hopefully this will be the last and I can go on the 6 month routine. NO HANDS ALLOWED. As I mentioned before, my right hand that blew the vein is totally fucked from this idiot nurse putting the IV in my nerve then my vein and she knew it was going to blow but stepped away to get a bandaid before removing it. My whole right hand still feels damaged, it goes numb at times then feels like it is freezing to on fire. It is also a still solid black color with some blue hues to it. So arms only from now on. This is my body, I call the shots.

Since I am part of Boland’s trial study for FAP a little bit more goes into my case. I guess that is a good thing. All the doctors here are trained to deal with FAP and LYNCH cases. So my GI, she went and looked at my nasty polyp (as she called it) and said they have to go back in and make sure they got it all out that it looked very bad under the microscope and didn’t want to risk waiting. Another GI will be there so we had to book this upper on his schedule too, usually it’s a Friday. So yay for more pain. My pouch hurt after the last upper a couple weeks ago. Not sure why, it wasn’t touched. Maybe just trauma in general and gas build up. I also had a viscous IC flare so I don’t look forward to that and lets not forget the throat being butchered. I once thought uppers didn’t hurt but now if I had a colon I would prefer the colonoscopy. I guess once they start hanging out and doing more stuff up top the throat hurts like hell. Makes me sick for a day or 2.

Also she can see if the sublingual previcid is doing anything since she gave it to me 2 weeks ago for my severe esophigitis and gastritis. I can’t get rid of the esophigitis, the ulcer isn’t present anymore so I guess Nexium worked for that but this is going on a long time now and once the cells change it turns into cancer. I am basically one big cancer cell. I can’t remove anything else so that is a very nervous state to live in. All it took was a few months.. I just had my colon removed and I grew this crap fast. Must be nice for the people with FAP that just grow small adenomas. That isn’t my case. You can’t escape your own body that in the end will kill me. Just love my DNA.

Chemo if needed, I don’t see the point for. We can’t stop forming these things. I think it will be time to retire to the beach. Something I wanted to do instead of taking my colon out. Steve Jobs was on to something and I should have gone with my gut feeling to never have had any surgery and just lived the last of my life out.

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2 thoughts on “2nd Scope Monday: duadenum

  1. hi vanessa. i don’t know u but I do know wilkerbooty. my daughter just died from fap. long hard fight. while I have no words of false hope or encouragement, I do know that it ain’t over til its over and it’s wasted energy to have much hindsight. I am also a nurse which was a tiny advantage for advocacy for my daughter in that I speak the language and have a big mouth. it is an awful disease, really fucked up. bec had her K-pouch at cleveland. while she never really had any problems, it sort of ended up running her life a bit. she used to do caporiea, a brazilian marshall art but eventually had to stop, fearing all the backbends would eventually hurt her pouch. anyway, that is part of our sad story, there r a million of them out there. I wondered if u use the marlin catheter? I have about 2 dozen that I would love to pass on as well as some other supplies if u cud use them. let me know. am on facebook. I am still keeping my daughters blog going with some of her journal postings and fb messages, so I can also be reached there. http://www.thecolonchronicals.blogspot.com
    if ever u need anything, just ask. the fap community is tight!

  2. Hi Mary, thanks for the reply! I never talked to your daughter but I knew people in the FAP community that did. Sorry for your loss. I sometimes think it is harder for my mom than me, the possibility of maybe dying part. I know it isn’t over until it is over but it’s exhausting. My pouch as much as I tell it not to run my life sort of does. It’s is so hard to explain to people that don’t have them what hell it is to have them. I urge everyone to have early colonoscopies, I wouldn’t wish anyone having to remove their colon. I just got diagnosed 9 months ago so this is all new. I am turning 36 in August so I guess I am lucky they said I didn’t have a stage 4 cancer being so late diagnosed. I am debating going to the Cleveland Clinic for my pouch issues. I feel like doctors here don’t listen to me. Why can’t we be our own doctors? Or at least call in for tests we are sure we need.

    Anyway, I use both of the catheters. I seem to have some valve issues so I rotate between both of them. I’d gladly take them and I also have a friend with a BCIR who doesn’t have insurance to cover her supplies that I can pass half on to. you can always send me an email at vanessavy@gmail.com

    Nice to meet you!

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