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Hospitals and Long Term Treatment: Chronic illness thread for the repeat customers part 2

Munkus BeaverMunkus Beaver Registered User, ClubPA regular
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 that I have a slowing fistulazing tract causing enormous pain which is too close to operate at the places I've been but close enough to cause FUCK FUCK pain. Doctors think I am lying or seeking drugs, I put on a strong face for my best friend but this most recent visit colapsed and I am now hoping I get to go to the hospital because holy fuck it hurts. I just want an end to this endless parade of suffering and misery. I have few things, books or games, to keep my mind off. When I try to play the games I want to play, the pain sucks the fun out of it. So I don't know, I am at wits end and am trying to lose it. I haven't been around much here due to pain. I haven't kept up my social life due to real pain.

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. Let's talk disease! Hospitals! Pain! Walking it off!

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

  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    Now in hospital because the pain was too much to bear, even with my at home medicines. Hooked up to machines, just staying
    Here until I go to the pain clinic and work out something intense.

    I hate my life. It was jus salt in the wound that the day before I went in, my friend got in the blizzard MOBA beta right before my eyes. He was visiting, but with me in the hospital he cut it short and is gone. I will be here til Thursday when they will send me to the pain clinic to find a solution to work until I go to Mayo to hopefully have this fixed.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    So I am bored as shit in day four of boring ass hospital stay. Someone FaceTime me for fun or call me or something. Jeez, it is as boring as two kegs of piss.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • MegaMan001MegaMan001 CRNA Rochester, MNRegistered User regular
    Hey man, when are you coming to Mayo? I'll show you around and help out with appointments or anything - buy you a beer assuming it won't kill you?

    I am in the business of saving lives.
  • MadEddyMadEddy Creepy house watching youRegistered User regular
    I was an hour late to work from barfing up my meds today. Fun fucking times.

    ruby-red-sig.jpg
  • LiiyaLiiya Registered User regular
    I would face time but I don't have one of them fancy iphones.

    That sucks Eddy, I hope your boss was okay with you being late :? .

    cabsy
  • chrishallett83chrishallett83 Hi! Registered User regular
    Liiya wrote: »
    I would face time but I don't have one of them fancy iphones.

    That sucks Eddy, I hope your boss was okay with you being late :? .

    Skype?

    terriblepostsigpic.jpg
  • LiiyaLiiya Registered User regular
    oh yeah

  • cabsycabsy the fattest rainbow unicorn Registered User regular
    Well either I had an ovarian cyst rupture or like I got some Alien-style chest buster shit going on around my left ovary because I went from kind of crampy sore feeling to getting out of the car made me scream in pain

    My four year old niece tripped and took a face first header into a sharp point of molding earlier tonight and had to get four stitches right in her forehead between her eyes... We like to start them on head injuries young

  • TheStigTheStig Registered User regular
    edited February 2015
    cabsy wrote: »
    Well either I had an ovarian cyst rupture or like I got some Alien-style chest buster shit going on around my left ovary because I went from kind of crampy sore feeling to getting out of the car made me scream in pain

    My four year old niece tripped and took a face first header into a sharp point of molding earlier tonight and had to get four stitches right in her forehead between her eyes... We like to start them on head injuries young

    if you have an ovarian cyst it can torse, causing the blood supply to be cut off, requiring emergency surgery to fix it

    other incredibly painful things in that area include ectopic pregnancy

    also constipation

    basically what I'm saying is that sort of pain justifies a visit to the doc

    TheStig on
    the-place-beyond-the-pines-03_thumb_zps3d4e0ec7.jpg
    bnet: TheStig#1787 Steam: TheStigCFN: Stiggles
  • cabsycabsy the fattest rainbow unicorn Registered User regular
    edited February 2015
    TheStig wrote: »
    cabsy wrote: »
    Well either I had an ovarian cyst rupture or like I got some Alien-style chest buster shit going on around my left ovary because I went from kind of crampy sore feeling to getting out of the car made me scream in pain

    My four year old niece tripped and took a face first header into a sharp point of molding earlier tonight and had to get four stitches right in her forehead between her eyes... We like to start them on head injuries young

    if you have an ovarian cyst it can torse, causing the blood supply to be cut off, requiring emergency surgery to fix it

    other incredibly painful things in that area include ectopic pregnancy

    also constipation

    basically what I'm saying is that sort of pain justifies a visit to the doc

    Well I'm at the ER now so don't worry I ain't dumb. So far ultrasound didn't see anything but they're gonna give me a pelvic. It could also be a kidney stone or something so who knows man.

    lots of small cysts consistent with pcos being a shithead but no large burst ones, but "well you do know you have a UTI", no I didn't, so three days of cipro and some lortabs. wondering if my humira is making me get utis/kidney infections way easier bc I'd never had one until I went on methotrexate and now I get 1-2 a year

    cabsy on
  • StaleStale Registered User regular
    edited February 2015
    Stale Problems:

    Cancer, currently stage III-IV, depending on who you ask and how they view it. I have a constricting spiderweb of cancer from the bottom of my stomach, all the way to my colon. This causes extreme pain and gastro-intestinal issues aplenty.

    tumblr_m8gayn07eU1ql5yr7o1_400.gif

    Also, http://http://en.wikipedia.org/wiki/Diabetes_mellitus_type_1 , the "bad kind". The kind that doesn't result from being a fat American. The kind you can't fix with "diet and exercise". No, your prayer-chains and super-cinnamon won't do a God-Damned thing but piss me off.

    hulk-smash.gif

    Now, remember the cancer? yeah, that prevents food from properly absorbing into my system. Guess what gets really picky and acts like an absolute asshole about carbohydrates entering the bloodstream? Diabetes.

    qDOfG.gif

    Guess what happens when your Diabetes is so wacky and fun-filled that your sugars are in a perpetual dance? http://http://en.wikipedia.org/wiki/Diabetic_neuropathy !! My nervous system very literally, very slowly, over time, and in a very painful way, short circuits and dies.

    tumblr_inline_mhsevoN9Dq1qz4rgp.gif

    Now, are you still playing along at home? I hope so because now it gets fun.

    tumblr_mdnvo2o8v31r0jeh0o6_250.gif

    Guess what really, really requires clear nerve signals in order to effectively work? Your circulatory system! That's right. So when that starts breaking down, what happens kids?

    http://en.wikipedia.org/wiki/Stroke !! Yaaaaaaaay!!!! It's an awesome one-two punch from the universe that not only are you doubled over in pain, crippled, and slowly rotting, but now you randomly black out, shit yourself, and forget entire days.

    tumblr_mfus2bfGlb1s22sezo1_500-thumb-500x206-66772.gif

    I think that about covers it. In the end, I shuffle along like anyone else.

    KWA6j.gif

    Stale on
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    tynicDevoutlyApatheticjgeiscabsynumber13knitdanVegemyteNoisymunkCaulk Bite 6Bé ChuilleSkeithDoctorArchSyphyreVivixenneKochikensTofystedethDisruptedCapitalistTeffightinfilipinocrzyangoLeitnerGnome-InterruptusTankHammer
  • Bobkins FlymoBobkins Flymo Fantastic Registered User, Moderator mod
    But...you can walk it off, right?

    Please walk it off.

    U9Syuit.png
    DevoutlyApatheticchrishallett83jgeisUsagiSlacker71PsykomaknitdanceresASimPersonVegemyteCaulk Bite 6Bé ChuilleAnzekaySkeithSyphyreVivixenneLorahaloKochikensTofystedethDisruptedCapitalist
  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    Stale: the south's sexiest zombie?

    chrishallett83StalecabsyUsagiCelloBé ChuilleMadEddySkeithVivixenneLorahaloKochikens
  • CelloCello Registered User regular
    @Stale, all of that just confirms that you're my favourite Lich King.

    2016 Holiday Wishlist
    Steam
    3DS Friend Code: 0216-0898-6512
    StalePsykomacabsycereschrishallett83Caulk Bite 6MadEddySkeithMom2KatDisruptedCapitalist
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    I read that as Bitch King and felt Stale would approve.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
    tynicCelloSlacker71
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    Oh and someone used my CC to buy some itunes.

    Yay.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • Phoenix-DPhoenix-D Registered User regular
    Oh and someone used my CC to buy some itunes.

    Yay.

    That means you get to give them all your health issues, right? Since they're now you.

    DevoutlyApatheticCaulk Bite 6The BetgirlMadEddyCalicaCelloSlacker71SkeithZibblsnrtfightinfilipino
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    March 19th I go up for surgery on the 20th.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • FyndirFyndir Registered User regular
    So I think my right wrist/hand now has rather less hair than my left.

    I'm not sure what that means, but my guess is it's related to how my right hand is full of blood like a balloon.
    ok, that's not really true, but there is a bit of something going on along those lines because of the way my fistula acts.

  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    Probably the increased blood flow means your right hand has a higher natural temperature and your body has decided you don't need the insulation.

    chrishallett83
  • MadEddyMadEddy Creepy house watching youRegistered User regular
    Have you considered not always using your left hand? Or make peace with mismatched palms, I guess.

    ruby-red-sig.jpg
    tynicSlacker71chrishallett83SkeithDisruptedCapitalist
  • FyndirFyndir Registered User regular
    MadEddy wrote: »
    Have you considered not always using your left hand? Or make peace with mismatched palms, I guess.

    Look unless you're volunteering to help don't criticise my shame business.

  • Bobkins FlymoBobkins Flymo Fantastic Registered User, Moderator mod
    Fyndir, the whole arm wrestling excuse is fooling NO ONE

    U9Syuit.png
    JoeUser
  • FyndirFyndir Registered User regular
    Fyndir, the whole arm wrestling excuse is fooling NO ONE

    Look 50% of the words are accurate.

  • knitdanknitdan Pretty Spry For a Fat GuyRegistered User regular
    Fyndir wrote: »
    So I think my right wrist/hand now has rather less hair than my left.

    I'm not sure what that means, but my guess is it's related to how my right hand is full of blood like a balloon.
    ok, that's not really true, but there is a bit of something going on along those lines because of the way my fistula acts.

    I'm kind of amazed they could get a hand fistula to work. When I first got one, the surgeon was like "yeah, it only works about 10% of the time, but we always try on the wrist/hand first"

    And I ended up being one of the 90% so they had to do one in the upper arm anyway. But this way they get paid for two surgeries instead of doing the one that is likely to work first.

    Fallen London: Joe Cusick
  • MadEddyMadEddy Creepy house watching youRegistered User regular
    So, today I found out that my mom had a mammogram that found lumps in both breasts. They're going to do biopsies and then it's waiting to find out.

    My mom is not allowed to get cancer. She's just not.

    ruby-red-sig.jpg
    tynicVegemyteButlercabsyBrogeyCalicaDisruptedCapitalistGnome-Interruptus
  • UsagiUsagi Nah Registered User regular
    Hugs Eddy <3

    (been there, it ultra blows)

    LiiyatynicSyphyrelonelyahavaSkeithButlerCreagancabsyDisruptedCapitalist
  • FyndirFyndir Registered User regular
    knitdan wrote: »
    Fyndir wrote: »
    So I think my right wrist/hand now has rather less hair than my left.

    I'm not sure what that means, but my guess is it's related to how my right hand is full of blood like a balloon.
    ok, that's not really true, but there is a bit of something going on along those lines because of the way my fistula acts.

    I'm kind of amazed they could get a hand fistula to work. When I first got one, the surgeon was like "yeah, it only works about 10% of the time, but we always try on the wrist/hand first"

    And I ended up being one of the 90% so they had to do one in the upper arm anyway. But this way they get paid for two surgeries instead of doing the one that is likely to work first.

    Oh, no, sorry for the misunderstanding, mine is at my right elbow.

    It just has tributaries running into my forearm, so there's decreased blood flow back out of my hand, or increased into it, or something, and they're not comfortable undoing/fixing/tying it off until maybe later this year or next year.

  • VivixenneVivixenne Remember your training, and we'll get through this just fine. Registered User regular
    edited March 2015
    @cabsy methotrexate hi5, I am petrified of getting side effects from it, I hope you're okay!

    @Stale @Munkus Beaver I love you dudes, even if we ain't super duper close anymore

    Vivixenne on
    XBOX: VIVIXENNEXIVIV | TWITTER | BATTLENET: VIVIXENNE#1433
  • VivixenneVivixenne Remember your training, and we'll get through this just fine. Registered User regular
    MadEddy wrote: »
    So, today I found out that my mom had a mammogram that found lumps in both breasts. They're going to do biopsies and then it's waiting to find out.

    My mom is not allowed to get cancer. She's just not.

    Hugs, dude. The stress of waiting and not knowing must be awful.

    XBOX: VIVIXENNEXIVIV | TWITTER | BATTLENET: VIVIXENNE#1433
    FyndirSlacker71jgeisUsagilonelyahavanumber13JoeUserSyphyretynic
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    edited March 2015
    We aren't close anymore?!

    Oh Jesus.
    Fyndir wrote: »
    So I think my right wrist/hand now has rather less hair than my left.

    I'm not sure what that means, but my guess is it's related to how my right hand is full of blood like a balloon.
    ok, that's not really true, but there is a bit of something going on along those lines because of the way my fistula acts.

    So it's an embolism? Filled with blood? not because of an IV that was infiltrated?

    One of the sharpest pain memories I have was from an embolism that formed because of a major error on my nurses part in giving me an IV that was unsuitable for putting contrast through.

    So it infiltrated the moment the pump started and I had a huge amount of contrast pumped there, took forever for it to go down.

    Munkus Beaver on
    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • TheStigTheStig Registered User regular
    edited March 2015
    Well technically that's an error on the CT techs part for using an unsuitable IV and not asking for a new one to be placed

    TheStig on
    the-place-beyond-the-pines-03_thumb_zps3d4e0ec7.jpg
    bnet: TheStig#1787 Steam: TheStigCFN: Stiggles
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    Kiiiiinda? I mean, they knew what procedures were going to be ordered, you can't really expect to get anything quick from a 22.

    But if I recall, it was my 8th stick and they were just taking my advice, since a 22 is easier to thread the vein on my arms, but I had no idea just how unsuitable it is for receiving contrast.

    I generally ask for 20s in my legs at this point, my arms are just wasted out veins.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • FyndirFyndir Registered User regular
    We aren't close anymore?!

    Oh Jesus.
    Fyndir wrote: »
    So I think my right wrist/hand now has rather less hair than my left.

    I'm not sure what that means, but my guess is it's related to how my right hand is full of blood like a balloon.
    ok, that's not really true, but there is a bit of something going on along those lines because of the way my fistula acts.

    So it's an embolism? Filled with blood? not because of an IV that was infiltrated?

    One of the sharpest pain memories I have was from an embolism that formed because of a major error on my nurses part in giving me an IV that was unsuitable for putting contrast through.

    So it infiltrated the moment the pump started and I had a huge amount of contrast pumped there, took forever for it to go down.

    Sorry again, sometimes (both here and in RL conversation) I forget that not everyone knows all my medical stuff because it seems so second nature to me, so sometimes I don't explain things properly.

    What I have is a hemodialysis fistula created at my elbow, so they have connected an artery to a vein there to create much stronger blood flow in that vein to make dialysis easier, as a result of it misbehaving slightly some veins further down into my forearm are enlarged and my right hand has extra blood that is slower to move back out of my hand. The only real discomfort this causes is around the level of varicose veins (according to the doctors) and even then only sometimes, so an moderately strong ache that makes me somewhat unwilling to do anything that requires effort or movement from that arm.

    Helpfully this was created pre-emptively and never got used, but even a year after the transplant (P.S. not one of you wished me a happy Kidney Day last Sunday, you monsters) they are unwilling to surgically get rid of the fistula (most common term I've heard doctors use is "tie it off") because of the concern that I may suffer rejection and need it after all.

  • VivixenneVivixenne Remember your training, and we'll get through this just fine. Registered User regular
    Munkus I think we are still pretty close but I don't like to presume - it's been a long time since our last 1:1 <3

    XBOX: VIVIXENNEXIVIV | TWITTER | BATTLENET: VIVIXENNE#1433
  • Munkus BeaverMunkus Beaver Registered User, ClubPA regular
    I am having to go to the Mayo fucking Clinic to get to a doctor who will attempt surgery.

    Seriously. It's kinda fucked up when you have doctors going "Yeah, you need surgery. Badly." then: "Oh, but I would not be comfortable doing it." followed by: "It's not life threatening, it's only pain."

    I don't think I will ever forgive them for saying that. I mean, I understand. Fistulalyzing Crohn's. You cut, you cause strictures, scars, and fistulas. Currently it's a tract that is burrowing and drains into a small abscess that is sooooo close to the intestines that it makes many people nervous about approaching it.

    But I find it weird as shit you have a fistula on your arm...and they aren't doing anything about it? That's like...put a seton or a drain or even just excise it.

    Steam name: munkus_beaver
    WiiU: munkusbeaver and Nintendo ID (3DS thinger): 0619-4510-9772
    Blizzard thing: munkus#1952
    Humor can be dissected, as a frog can, but it dies in the process.
    Twitter for health updates: https://twitter.com/MunkusBeaver
    Please give to the Crohn's and Colitis Foundation of America: http://www.ccfa.org/
  • chrishallett83chrishallett83 Hi! Registered User regular
    Uh... Happy Kidney Day for last Sunday, Fyndir!

    terriblepostsigpic.jpg
    ButlerMadEddyAngelinaSkeithknitdanBé ChuilleSlacker71Brovid Hasselsmof
  • ProlegomenaProlegomena Frictionless Spinning The VoidRegistered User regular
    It's kidney day! It's kidney day! Kidney kidney kidney day!

  • JoeUserJoeUser Registered User regular
    Hugs munkus!

    PSN: JoeUser80 Steam
    LiiyaAngelinaSlacker71
  • FyndirFyndir Registered User regular
    Uh... Happy Kidney Day for last Sunday, Fyndir!

    It's probably not until next month in upside down land place anyway.

    chrishallett83
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