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Hospitals and Long Term Treatment: Chronic illness thread for the repeat customers

Munkus BeaverMunkus Beaver Registered User, ClubPA regular
edited February 2012 in Social Entropy++
Ok, there have been a few threads recently that flirted with this concept, but I would like to offer a safe haven for those who have Chronic Health Problems. Not Mental Health issues or Hypochondriacs or those who 'get sick' and proceed to 'get better,' I am talking about those of us with physical conditions that we live with and try to 'placate' in the long term.

Because for us there is no real 'cure' or 'getting better,' there is 'remission' and 'flare-up.' If we feel depression, it's not due to brain chemicals being goof, it's due to the crippling physical pain that saps strength. We are those that go to the hospital and know more than the doctors do unless they are specialists at the top of their game. We have been around the block and know when a doc is lying to make you feel better, rushing to get you out the door so he can deal with an easier patient, and when a doc is actually taking his time because he gives a shit about what happens to your ass.

So let's share stories and updates on these lifelong conditions of ours. I've got a few stories, but I'll start with a brief description of my condition and an update on where I stand.

Munkus Problems:
Crohn's with the complication of a Colectomy (I had my colon surgically removed because they were sure I had colitis, they are wrong in these scenarios about 10% of the time apparently).
Dealing with Crohn's since I was 13, so about 13 years of Crohn's or about half my entire life. Crohn's also causes/is related to my other issues (anemia, arthritis, psriosis, chronic epdidymitis, fistulas)

My update is not good! I am posting from the hospital bed that I've been in since Weds. I recently talked to a surgeon who had a look at my pouch (the area of my small intestines that replaces my colon in function is called my 'J-pouch' and lets me function without an ostomy). He described it as an inflamed mess down there with multiple cavities, abscesses, and fistulas throughout the rampant inflammation. He went in to 'drain a perianal abscess' that had been discovered using an ultrasound scope with a needle and a cathater. However, the abscess wasn't pus filled, it was basically just a cavity. He still inserted a catheter into the area in case it might help the area 'drain' or close up but was not hopeful. Most tissue heal like this is soft tissue capable of healing. He described the area which he put the catheter into as "crunchy tissue" that was heavily scarred and strictured as opposed to, you know, flesh. He said he could feel the crunch when he inserted the needle. I asked him if this cavity was the cause of my pain, to which he replied "You really have so many things down there that would be causing you pain it is hard to say isolating and fixing any one of them will give you relief." He rather reluctantly explain that he felt the only real option was to create an ostomy, either diverting or permanent, as I am on some of the 'most powerful crohn's medicine possible' and things aren't looking up. He explained that really, something needs to be done because the disease is winning and we are basically getting to the point where we are watching me lose weight and slowly die.

tl;dr - My update is that my Crohn's is winning the battle and the war against my body.

How about you, fellow chronic physical illness sufferers? Let's compare scars and war stories, vent about doctors and other such bullshit, share updates and reveal our sordid past with our diseases and cancers.

Steam name: munkus_beaver
Blizzard thing: munkus#1952
Nintendo ID (3DS thinger): 0619-4510-9772
Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
Humor can be dissected, as a frog can, but it dies in the process.
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Posts

  • Blake TBlake T Registered User regular
    I walked up the stairs last night and wrenched my back out even further.

    I wasn't so fussed with the pain, I was more annoyed that I hurt myself navigating stairs.

  • chrishallett83chrishallett83 Hi! Registered User regular
    Nothing near as bad as most of you fellers/lovely ladies are suffering from, but I have near constant soreness and stiffness in my neck, which results in migraines on an almost daily basis. I can just ignore the vast majority of them thanks to sheer experience, but occasionally (once or twice a month) a particularly vicious one will slip past the keeper and render me useless for a few hours.

    terriblepostsigpic.jpg
    AusPAX tickets get [X] Accomodation get [X] Plane tickets get [X] Goodie giftbags made [X]
  • TonkkaTonkka Some one in the club tonight Has stolen my ideas.Registered User regular
    I fucking hate hospitals, and I pity and feel for anyone that has to spend any time in one.

    This goes for patients as well as nurses, EMTs, and doctors.

    Hospitals fucking suck.

    If I ever have to visit a family member in a hospital again I will probably slit my own throat in the hallway.

    FUCK

    HO

    SPI

    TALS

    tonkkatrikesig.jpg
    Gamertag: T0NKKA - Steam: evilumpire Twitter Art blog/Portfolio! HEY SATAN
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    My mantra is that there are two types of doctors: your niche and your good docs.

    Niche docs are fine for normal people and will rarely cause much problem to those normals. They have enough general knowledge about things that they can stumble across a fix or at least do less harm than good as they burrow their way out of a problem. These docs are fucking. terrible. for Chronic patients. Moreso if they believe that their degree gives them divine providence to override input and suggestions from the patient. These are docs who will never go outside their comfort zone for either diagnosis or treatment. If you suggest either, they will either outright refuse, passively aggressively refuse and coach you back, or shrug and say 'sure' without attempting to understand the treatment itself.

    I ran into a nice Niche doctor here. He was basically useless with providing aid or treatment, but he did the part of his job that he could: answer my questions on specific medical terminology. He tried his best answersing questions, but his information about my actual condition and the treatment plan was so often wrong or contradictory that it was useless. Thing is though, I felt he could actually tell this by the end of his last visit on his rounds yesterday. He just seemed so resigned, and when I thanked him for his help he kinda made a look and stutter that said to me "I was useless, the fuck did I do."

    I said "You really helped give me a lot of information that I need in order to make an informed decision about my care." He nodded his head and said "I'll...I'll accept that, thank you sir."

    If I'm gonna run into a Niche doctor, I appreciate when they identify themselves as such.

    Steam name: munkus_beaver
    Blizzard thing: munkus#1952
    Nintendo ID (3DS thinger): 0619-4510-9772
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    Humor can be dissected, as a frog can, but it dies in the process.
  • VivixenneVivixenne aDAWRable! Registered User regular
    edited February 2012
    look just to be nitpicky, mental health problems are closely linked with chronic illness, mainly because chronic illness directly impacts your mental health and are frequently comorbid with tons of mental health issues

    re: your depression example, just because it's caused by a different thing doesn't mean it's not still a serious concern or the same basic disease (from a mental health standpoint)

    axis 3 in the DSM-IV basically links medical/physical or neurological conditions (such as lack of energy caused by diabetes or severe pain) to mental health

    but I get what you're doing in this thread, that's just my $0.02, I'm outie

    Vivixenne on
  • VivixenneVivixenne aDAWRable! Registered User regular
    also Munkus, dude, sorry to hear about the latest, cuz that is some serious news to get :(

  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    Just more material for my eventual book without a happy ending.

    Steam name: munkus_beaver
    Blizzard thing: munkus#1952
    Nintendo ID (3DS thinger): 0619-4510-9772
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    Humor can be dissected, as a frog can, but it dies in the process.
  • HunterHunter Chemist with a heart of Au Registered User regular
    Just more material for my eventual book without a happy ending.

    You have to slip the 'massage' girl an extra $20 for that.

  • DrZiplockDrZiplock Registered User regular
    Hey, Munkus? I don't think you saw this in the Satan's thread so I'll post it here instead.

    Ahem....I AM YOUR SATAN.

    And this? This is the last part of your gift. The part that needed to be created so it took a bit more time.

    ziplock_com_handchange.png

    Hi-rez version can be emailed to you to do with what you will.

    Get healthy.

    snap02869.jpg "zip, i dunno what it is about you, but there's something very cat-like about your face. i can't really place it. like, a puma or something. you'd make a good mountain lion." Hail Satan!
  • HunterHunter Chemist with a heart of Au Registered User regular
    edited February 2012
    Speaking of medical woes, I had an evaluation this morning about my recent head smash into concrete = brain smacked off the inside of my skull and I R Concussion.

    Apparently, I'm still not what they would call symptom free. I tried telling the doctor I had to play in the big game this weekend and my team needs me. I'm not sure if he knew I was joking or if he thought I had brain damage. He was foreign, so he may not quite know about Super Bowl weekend or about my dark secret curse where within the presence of evil or douche, I transform into Were-Tom Brady and win football games. Hence why I have to play for Belichick and why the Tom Brady is kind of douchey.

    Hunter on
  • VivixenneVivixenne aDAWRable! Registered User regular
    edited February 2012
    Oh my god Zip that is INCREDIBLE.

    Vivixenne on
  • ZayZay Registered User regular
    That sucks Munkus :(

    I hope everything gets better for you.

    4lHNTd4.png
  • Bobkins FlymoBobkins Flymo FF69B4 Registered User, Super Moderator, Moderator mod
    I want to echo that hospitals suck. When I had my tonsilectomy, they actually had ran out of ice cream. When you're 11 and going to the hospital during the summer, that's like the one silver lining of the whole thing.

    I also threw up in the parking lot. I guess I'm a big baby, but I dunno how you repeat hospital goers do it. HIDDEN WELLS of strength, I guess.

    73zrBvC.png
  • ThreeCubedThreeCubed Registered User
    I am fortunate in that my dying organ is one that many many many people get taken out anyway. And when I get the money, this gallbladder is coming out.

    I spent years "dealing" with it until I was forced to go to the hospital and have it looked at and diagnosed. It's been quiet for the past few years, but I know it's just waiting to rear its ugly head sometime in the near future.

    Lemme tell you, those years of pain and infection? Torture. And it wasn't even a constant pain. You people that do have to deal with constant pain? That's some raw, survival, animal strength there. I'd gladly take my little pussy dose of pain when I watch you guys go through what you go through.

    EyQGd.jpg
  • Romanian My EscutcheonRomanian My Escutcheon Two of Forks Registered User regular
    Will, tell your shitty asshole body to quit being a shitty asshole.

    2cf4m6f.gif
  • DrZiplockDrZiplock Registered User regular
    Actually, not having a shitty asshole is most of the problem.

    snap02869.jpg "zip, i dunno what it is about you, but there's something very cat-like about your face. i can't really place it. like, a puma or something. you'd make a good mountain lion." Hail Satan!
  • HunterHunter Chemist with a heart of Au Registered User regular
    DrZiplock wrote:
    Actually, not having a shitty asshole is most of the problem.

    That's why he became a lawyer. He needed some kind of working asshole, so he might as well just do it himself.

  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    Oh damn Zip, that's pretty awesome!

    Steam name: munkus_beaver
    Blizzard thing: munkus#1952
    Nintendo ID (3DS thinger): 0619-4510-9772
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    Humor can be dissected, as a frog can, but it dies in the process.
  • DrZiplockDrZiplock Registered User regular
    Merry Christmas, bud.

    And to answer the question of "the chili cheese fritos, how did you know?" Very simple: because I think I was the one who told you to shut up and go get them yourself.

    I figured I at least owed you a box of 50 or so bags.


    as for the pic: All artistic goodness credit goes to Mully. I just commissioned the sucker...hounds-tooth tie and all.

    snap02869.jpg "zip, i dunno what it is about you, but there's something very cat-like about your face. i can't really place it. like, a puma or something. you'd make a good mountain lion." Hail Satan!
  • StaleStale Registered User regular
    Stale's update:

    My shit is fucked. The cancer's acceleration was slowed by the 6 months of chemo last year, but not stopped, and certainly not reversed. While it's nowhere near as fast as it was moving over the past couple years, the damage is done. The chemo almost killed me outright and has reduced my liver output to almost nil. My kidneys are still doing their thing, but it's touch and go. It will not be long before I begin dialysis at this point.

    I met with the surgeon, who has put forth the idea of removing the cancerous tissue. This would involve removing almost all my intestines and colon, thus leaving me with a straight slip-n-slide into an ostomy. I refused. Munkus is a far better man than I, I choose death before the ostomy. The surgeon only offered the idea as a formality, he doesn't think my body could handle the recovery anyway. "As soon as I start cutting into you, the clock starts."

    So I'm left with 2 options, A) Get the surgery, and live 3-6 months in less pain and die from my body giving out. B) Stay the course and linger in pain for however long it takes for my systems to shut down.

    The irony here, is that after all this bullshit, after everything I've done to my body, has been done to my body, and every thing that has gone wrong or that I've survived against all odds, I'll die from diabetes. The autonomic neuropathy will stop my heart, or stroke me out before the cancer has a chance to kill me. Ain't that some shit?

    easysig2.jpg
  • ButtersButters A glass of some milks Registered User regular
    At least it's not pussy diabetes, Dan.

    League of Legends: Lamby Cakes | XBox Live: Jon Butters
  • StaleStale Registered User regular
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    If diabetes does you in I'm suing Wilford Brimley for Regicide.

    Steam name: munkus_beaver
    Blizzard thing: munkus#1952
    Nintendo ID (3DS thinger): 0619-4510-9772
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    Humor can be dissected, as a frog can, but it dies in the process.
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    Plus all your shit would clear up if you just tried the paleo diet for a little while. I know a guy that did that and some juicing and BAM no more diabetes.

    Should be afraid to try new things, Dan. Don't make fun of me, people have been using these tricks for thousands of years! If it works for some people why question it at all! LET'S GO SEE THE HOMEOPATH TOGETHER DAPPER DAN

    Steam name: munkus_beaver
    Blizzard thing: munkus#1952
    Nintendo ID (3DS thinger): 0619-4510-9772
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    Humor can be dissected, as a frog can, but it dies in the process.
  • HunterHunter Chemist with a heart of Au Registered User regular
    Butters wrote:
    At least it's not pussy diabetes, Dan.

    If you're going to eat yourself to death though, that's not a bad way to go.

  • StaleStale Registered User regular
    Hunter wrote: »
    Butters wrote:
    At least it's not pussy diabetes, Dan.

    If you're going to eat yourself to death though, that's not a bad way to go.

    Gorge yourself for 40 years, and die in your sleep of liver failure.

    easysig2.jpg
  • JoeUserJoeUser Registered User regular
    Man, I wish there were some way I could help. :(

    PSN: JoeUser80 Steam
    lonelyahava
  • TheStigTheStig Registered User regular
    I'm going to move to Las Vegas and eat myself to death.

    the-place-beyond-the-pines-03_thumb_zps3d4e0ec7.jpg
    360: Sir Stiggleton PSN: Stiggy_PA GFWL: RacerStig Steam: TheStig
  • HunterHunter Chemist with a heart of Au Registered User regular
    JoeUser wrote:
    Man, I wish there were some way I could help. :(

    Suck the cancer out through his penis. It's the only way.

  • JansonJanson Registered User regular
    Dang, to both Munkus and Stale :(

    sharasugar_80.png sharanomsugar_80.png
    lonelyahava
  • MorivethMoriveth Nobody suspects a thing... Registered User regular
    Stale when you die I'm hoping you go out flipping off both god and the devil

    And then you rise again as an immortal lich

  • PersonfacePersonface HAIL GAY SATANRegistered User regular
    edited February 2012
    This is appalling
    My condolences and encouragement to you both.
    The closest I suppose I ever came to something like this was while I was growing up in India, and at about the age of 5 contracted a vile case of E-coli, resulting eventually (After a two month battle) in a three day coma in a hospital bed basically waiting for either my kidneys to die or to just give up the ghost altogether. Then I miraculously recovered with no lasting damage, which was astonishing luck. Thankfully I don't remember much of that, having been on a cocktail of drugs aside from being pretty young.

    Personface on
  • MeizMeiz Registered User regular
    If you don't have any dependants, might as well get a bunch of plastic and go on a fuck the world tour.

  • Romanian My EscutcheonRomanian My Escutcheon Two of Forks Registered User regular
    Stale wrote:
    Stale's update:

    My shit is fucked. The cancer's acceleration was slowed by the 6 months of chemo last year, but not stopped, and certainly not reversed. While it's nowhere near as fast as it was moving over the past couple years, the damage is done. The chemo almost killed me outright and has reduced my liver output to almost nil. My kidneys are still doing their thing, but it's touch and go. It will not be long before I begin dialysis at this point.

    I met with the surgeon, who has put forth the idea of removing the cancerous tissue. This would involve removing almost all my intestines and colon, thus leaving me with a straight slip-n-slide into an ostomy. I refused. Munkus is a far better man than I, I choose death before the ostomy. The surgeon only offered the idea as a formality, he doesn't think my body could handle the recovery anyway. "As soon as I start cutting into you, the clock starts."

    So I'm left with 2 options, A) Get the surgery, and live 3-6 months in less pain and die from my body giving out. B) Stay the course and linger in pain for however long it takes for my systems to shut down.

    The irony here, is that after all this bullshit, after everything I've done to my body, has been done to my body, and every thing that has gone wrong or that I've survived against all odds, I'll die from diabetes. The autonomic neuropathy will stop my heart, or stroke me out before the cancer has a chance to kill me. Ain't that some shit?

    Son of a bitch.

    2cf4m6f.gif
  • PiptheFairPiptheFair Registered User regular
    Stale wrote:
    Stale's update:

    My shit is fucked. The cancer's acceleration was slowed by the 6 months of chemo last year, but not stopped, and certainly not reversed. While it's nowhere near as fast as it was moving over the past couple years, the damage is done. The chemo almost killed me outright and has reduced my liver output to almost nil. My kidneys are still doing their thing, but it's touch and go. It will not be long before I begin dialysis at this point.

    I met with the surgeon, who has put forth the idea of removing the cancerous tissue. This would involve removing almost all my intestines and colon, thus leaving me with a straight slip-n-slide into an ostomy. I refused. Munkus is a far better man than I, I choose death before the ostomy. The surgeon only offered the idea as a formality, he doesn't think my body could handle the recovery anyway. "As soon as I start cutting into you, the clock starts."

    So I'm left with 2 options, A) Get the surgery, and live 3-6 months in less pain and die from my body giving out. B) Stay the course and linger in pain for however long it takes for my systems to shut down.

    The irony here, is that after all this bullshit, after everything I've done to my body, has been done to my body, and every thing that has gone wrong or that I've survived against all odds, I'll die from diabetes. The autonomic neuropathy will stop my heart, or stroke me out before the cancer has a chance to kill me. Ain't that some shit?

    walk it off

    STEAM
    Spoiler:
  • PiptheFairPiptheFair Registered User regular
    STEAM
    Spoiler:
  • JoeUserJoeUser Registered User regular
    Hunter wrote:
    JoeUser wrote:
    Man, I wish there were some way I could help. :(

    Suck the cancer out through his penis. It's the only way.

    Fool me once, shame on you ...

    PSN: JoeUser80 Steam
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    JoeUser wrote:
    Man, I wish there were some way I could help. :(

    I could use help finding a job to pay the rent and, eventually, a computer and ipad (I was going to use my Christmas money to buy those things then ended up using it for this month's rent)

    Steam name: munkus_beaver
    Blizzard thing: munkus#1952
    Nintendo ID (3DS thinger): 0619-4510-9772
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    Humor can be dissected, as a frog can, but it dies in the process.
  • Bobkins FlymoBobkins Flymo FF69B4 Registered User, Super Moderator, Moderator mod
    How fancy a PC do you need? I have bits from my old one.

    73zrBvC.png
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