Differences

Everybody’s different. That’s the problem. Medicine and medical care, however, isn’t about that. They treat templates. Differences are accounted for, such as in my case, where I had a 1-in-20 chance of developing pancreatitis. But I weighed the odds, signed the consent form, and got to be that 1. So differences still matter. None of us is a template.

I’ve always had hunger pains. These were different from the feeling of hunger but they came at the same time. Certain other family members also have them. I’ve looked many places on the Web for answers to what my hunger pains actually are, with slim results. “Stomach acid” is the main suspect. But other people have that when they get hungry too, without the pain. What’s different in my case? The doctors say “That’s a good question”. Whenever somebody says that, they don’t have the answer. Would this condition have suggested that I might be sure to get pancreatitis if the inside of my pancreas was probed? I’d say yes, because that’s just instinct. I don’t know.

I tend to be prone to minor problems with what TV ads used to call “irregularity”. In both the liquid and solid directions, if you know what I mean. Was this a harbinger as well? Especially since I had spent more than a week prior to this event fighting irregularity of the liquid sort? How?

Anyway, pancreatitis in me was manifested, principally (though among other symptoms) by hunger pains in the extreme. Without the hunger. What does that tell us?

And what does it tell me now that my hunger pains (which are now associated with pancreatitis) are accompanied by actual hunger — not a lot of hunger, but some?

So, I have questions. Which means I’m feeling better. I still have a long way to go. Four bags of fluid now drip into my left wrist, and six colored wires run from a heavy portable telemetry unit to sticky tabs on my chest and back. I keep a spitoon by my side and dose my bathroom visits with choreographic precision, since wiring and tubing management — not to mention work with craphats and pisshats — makes every vist a complicated ordeal.

As of tonight I will have gone a week without a meal. And the end is not in sight. Yet.

19 comments

  1. Michael O'Connor Clarke’s avatar

    Jeez, Doc. This is grim but gripping. Following the inside story of your insides is like reading some strange kind of pootrain manifesto.

    The pain, the not knowing, the tubes, tests, prodding and poking – all of that must be just plain rotten. But I think the part about going a week without an actual meal would be the the worst bit, if it was me.

    When you’re back on your feet and back on your travels again, I’ll line up a nice big tri-tip steak for you next time you’re in Toronto. There’s a little place on the Danforth that does some of the best meat I’ve ever tasted. We’ll pick some up and fire up the BBQ for you.

    Now all you have to do is get those darn tubes out and git yer scrawny old arse up here. What you waiting for, man?

  2. Jan Searls’s avatar

    A “Poo-train Manifesto” – that’s a phrase I think I’ve been searching for lo these many years, Bro, particularly when you took more than your share of bathroom time! Count on you to blog about it – I just hope you appreciate reading your efforts here when you’re off the drugs.

    There are a lot of thoughts, prayers and love coming to you from down here in NC. And remember, you guys just say the word and I can be up there at the drop of a hat … uh, just make sure if it is one of your current “hats,” its empty first, OK?

  3. PXLated’s avatar

    Glad you’re feeling a little better Doc!!! Hopefully every day will form a trend and you’ll be out-a-there.
    ———-
    “Poo-Train Manifesto” – LOL – That’s great!
    ———-
    “Everybody’s Different” – So true. Two brothers are docs, they’ve always said that whenever a study comes out about something (recently, 2-cups of coffee is good for you/women) it’s true about the aggregate but not necessarily true about you the individual so pay attention only in general. Don’t live your life by them.

  4. Terry Heaton’s avatar

    Doc, there is so very much love for you out here, and know that it is working on your behalf to provide relief. I appreciate the occasional blog entries — and I think I speak for many here — because I care and want to know how the battle goes. As to the questions posed in this entry, it’s not surprising that your physical digestive system would be, um, “different,” because your information digestor certainly is. May God bless you and your body as it heals.

  5. Michael O'Connor Clarke’s avatar

    There has been some suggestion that I might be ill-advised to be cracking potty jokes about Doc’s situation, as – were he to laugh too hard – the results could be (ahem) explosive.

    Well, not that I think my lightweight punnery would really prompt Doc to bust a gut, but – on reflection – you have to admit it would be a great way to go.

    Or, at the very least, a better way to go than in one’s hat.

    I’m here all week. Try the veal.

  6. Maarten Lens-FitzGerald’s avatar

    Good to see you back online. And to hear you say that you are getting better. I am following everything closely from my hospital bed. Just now I sent you a challenge on twitter. Lets see who wins!

    I started making video journals now. it keeps me busy. Are you up for one too?

    Kahplah!

    Maarten
    http://maartensjourney.com

  7. Amos Anan’s avatar

    Firstly I should say that I hope you have a speedy and complete recovery. At least as speedy as possible considering what has already passed.

    I know in reading some of your prior posts I got the sense of the change in medicine that has occurred over my lifetime. When I was a kid (and not so much a kid as I’m thinking of my aging father) doctors used to make “house calls.” It isn’t so much the actual house call aspect that’s significant as what those house calls meant. To the doctor then the patient was a person worthy of concern and effort – as much so as whatever monetary benefit could be derived from said self mobile bag of fluids. That doesn’t seem to be the case anymore.

    The best you can say is that doctors behave like baseball managers, getting as much stats on “players” and situations as possible and then playing the best percentages they think exist. The problem with that analogy is that if things go bad the manager gets fired, though things have to go bad fairly often. With medicine, if things go bad, the doctors and the medical industry make a small fortune. No matter how altruistic people may be I don’t think many could maintain altruism faced with an easy, and safe, profitable choice like that.

    Really. Is there that much difference between the current medical profession and breaking down in your car in an unknown town or neighborhood? There is. One is pretty much limited by the value and cost of a car.

    I’m winking at the Flyng Spaghtti Mnstr for ya Doc.

  8. Cousin Paul’s avatar

    jeez, but you do know how to have fun!!
    back off just a bit why don’t ya?
    glad you are feeling better and spare me a detail
    hope to see you soon

  9. Doc Searls’s avatar

    Well, sis & cuz, it’s hard to be delicate when discussing gastrointerological matters. Which I want to do so I can get opinions other than the ones I get just at this hospital.

    Anyway, thanks for following. I’m (very) gradually getting better.

    And, I just typed all this with an oxygen sensor wrapped around my pinky. Not bad.

  10. lurkerfan’s avatar

    “I’m winking at the Flyng Spaghtti Mnstr for ya Doc”

    And so am I. We always knew you were different, Doc. That’s what makes you irreplaceable.

    So get well, already.

  11. Geoff’s avatar

    Pleased you seemed to be on the mend. I went to a lecture on ‘personalized medicine’ here in Cambridge UK, but as the guy said, would you be the first to take the pill that will cure all your ailments! Since it would be impossible to trial such a drug!

  12. Suzi’s avatar

    Hi Doc-
    I’m so sorry that you are going thru this. I, too, have my very worst acute pancreatitis attacks when I am hungry. The theory is the digestive juices start up in the pancreas to help signal that you are hungry…and that is where that goes wrong for me…as my main pancreatic duct has been damaged. So, it is playing Roulette on whether the hunger is going to nearly kill me…or if I can eat before it nearly kills me…or sometimes the food itself can trigger the attack. I saw a post back a few days ago about having an advocate with you…whoever it was, they are right on! When I have to go to the hospital, I am already so bad off I can hardly move. Chris, my DH, stays with me and advocates for me. The nurses have been known to tell me to brush my teeth (don’t do that) they bring in broth and ask me to try (don’t listen to them until you are feeling sure within yourself…and only you will know) I have been given too much pain meds and coded, I have had malfunctioning IV’s, blow IV’s even before meds get on board, and I do not notice a lot of this stuff..either I am in so much pain, or they gave me some pain meds…and I am out there in space somewhere thanking God for pain killers, and they try to make me drink contrast to get a CAT Scan (which I agrued and told them I wouldn’t be able to keep it down…my hubby had to take a phone call and was gone 20 minutes tops…and that is when they came in and told me to drink it…I near saw him quite so angry before) So, please, have someone or even several someones advocate for you…just to watch and observe things. Pain meds can make the most determined people turn loopey. If you would like to e-mail me, I would be happy to talk with you more about this. I just want you to know that you are not alone…some differences, yes, but in all honesty, the medical community does NOT have a lot of answers when it comes to the pancreas. Keep asking questions, keep probing them…maybe it will light a fire under one of those research doctors and they will finally figure out a few things. Sending you healing vibes!
    Hugs,
    Suzi

  13. jeneane’s avatar

    the advocate-suggestion person – that was me.

    I’m watching and waiting and cheering and hoping that are doing better each day, Doc.

    Do you have someone at the hospital nearly all the time with you? Because that’s the way it has to be. For all the reasons Suzi mentions above. It’s hard for the spouse to serve the advocate role solo — especially if there is a child or children to care for at home. It takes an advocate to organize the outside-the-hospital help and the inside-the-hospital doctor/nurse/quality-of-care watch.

    It also takes that person to be in contact with an expert OUTSIDE of the facility you’re in, because then and almost ONLY then — when your doctors are faxing and phoning the outside doc you have consulting on the case because they have to — do you have a sufficient level of accountability. Or “transparency” as the web would like to call it.

    I am SO glad to see you posting and asking questions, Doc. The Sessums have been sending all our extra juice your way. You’re headed in the right direction.

    Now I’m going to ask right here, right now: Besides visitors and well wishers, do you guys have anyone there coordinating, watching, and getting outside opinions 18 hours a day? If not, I say Jan should head your way.

    Pretty pushy of me to say so. But I care. A lot.

    Please keep us posted.

  14. Russell Nelson’s avatar

    Doc, I had $X, and I did $Y, and it got all better, so I’m sure you can do the same thing.

    Insert appropriate metasyntactic variables FTW.

    Looking forward to seeing you at OSCON, but there’s no pressure. Worst comes to worse I’ll come visit you in Boston.

  15. Doc Searls’s avatar

    Sorry, Jeneane. I’ll switch that appreciation over to you now. Blame the drugs. :-)

    My wife has been my advocate, and our son has been off with friends at the beach, making that easier. She has lots of contacts with excellent medical folks on the outside, getting second, third, fourth and fifth opinions. These have been very helpful.

    Remember that I was put in this condition by a diagnostic procedure that sought to find the nature of three cysts on my pancreas. It was inconclusive. So there is still much work to be done, and there is a very real possibility that one of these cysts will turn into (or already is) pancreatic cancer. Nobody likes to say that, but there it is. I hope we find that they’re just old-person body junk (which I believe is the better chance), but we need to know.

    And we will learn from this experience. There is no doubt that my path after this will go through the same health care system, but with a better hospital and some different doctors.

    My sister and daughter both stand by to come in should my wife and kid head out to our home on the West Coast. This is good to know too. So we do have a team of sorts in place.

  16. Ruby Sinreich’s avatar

    Hey, I don’t mind the details as long you make them so entertaining! Glad to hear you are on the mend. Regards to your awesome support team.

    We’re thinking of you and your pancreas down here in NC…

  17. lurkerfan’s avatar

    “and there is a very real possibility that one of these cysts will turn into (or already is) pancreatic cancer. Nobody likes to say that, but there it is.”

    Doc, you are awesome. Thanks for acknowledging the elephant in the room. My mother died at age 80 of pancreatic cancer in 1984, diagnosed way too late for any hope of a cure. So of course, it was the first thing I thought of in your case. I’m hoping medical research has figured out this body part by now.

    Although you don’t know me, checking your blog daily is a much valued part of our day for both myself and my hubby. We are pulling for you to get well.

  18. jeneane’s avatar

    Doc, I’m so glad to hear you are getting second/third/fourth opinions. There are pancreatic experts in your area – good ones. I know you’ll get to them and that Joyce will get them on the case.

    In the mean time, I’m not sure when or where you’ll eat, but I hope it goes smoothly. Seriously, like Suzi says, double-triple check what the dinner lady brings when it’s time. I can’t tell you how many times I’ve been restricted from x/y/z and they wheel it on in at feeding time.

    When I had my pseudomembraneous colitis deal after surgery, I didn’t eat in the hospital for 8 days. I still remember the first cup of beef bullion broth. mmmmm ;-)

    I’m sorry you’re in the midst of what looks to be a long process, but I am heartened to hear you have support and detectives looking for the best care.

    You’re in my prayers – believe that. :-)

    jeneane

  19. Stephanie Booth’s avatar

    I have hunger pains too, always had as long as I can remember. I know my osteopath does “stuff” to me (I say “stuff” because a lot of how this works is pretty mysterious to me) that relieves it for some time. I also know that the “one spoonful of olive oil upon waking” helps a lot.

    I’ve also been tested for acid reflux (some horrible nightmarish medical memories there) and came back negative. So… not linked to hunger pains. Still no real clue what they’re caused by, and why what my osteopath does helps.

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