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You are here: Home / Open Threads / Mid-Afternoon Open Thread

Mid-Afternoon Open Thread

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Quite a few of you have emailed me personally since my daughter was diagnosed with Crohn’s disease.  Today we got confirmation of the diagnosis.  If I haven’t emailed you back, it’s not that I don’t care, or was offended, or anything remotely like that.  It’s that I’ve been busier than a one-legged man in an ass-kicking contest.  Rest assured that I have read almost every email sent to me, and I am deeply touched by the outpouring of support, both in that thread and in the emails you all have sent.  We have printed all of them out and have added them to our reading list for advice and information.

You guys really are some wonderful people, no matter what we tell everyone else about you.

Reader Interactions

62Comments

  4. 4.

    geg6

    If you find yourself unhappy with your daughter’s treatment (though this happens much less today than it did in 1972 when my sister was diagnosed), I cannot recommend the Cleveland Clinic too much. Dr. Fazio is the shiznit.

    And I know that the last thread was the one with pranks (though I’ve never heard of pranks on Friday the 13th), but I think this is one hell of a prank:

    maddowblog.msnbc.com/_news/2013/09/13/20478523-senate-dems-prep-brush-back-pitch-for-david-vitter?li…

    And this is how whiny diaper boy responds:

    livewire.talkingpointsmemo.com/entry/vitter-calls-for-ethics-investigation-into-reid-boxer?ref=fpa

    Fucking hilarious.

  5. 5.

    Elizabelle

    I really liked that you heard from folks who have lived with Crohn’s, or something like it, and survived just fine. And that nurses and other professionals weighed in too. It was a good thread.

    Best to the Soonerfamily.

    Maybe Soonerdaughter can do a blog for other teens, in time.

  6. 6.

    Cain

    Good luck, sooner to you, your family and especially to your daughter.

    Since this is open thread,
    Megan McCain did an AMA on reddit about an hour back. Mostly sane responses. She should really get over the fact that she’s not really republican.

  8. 8.

    gelfling545

    I have 2 close relatives who have Crohn’s. One is 15 years older than the other. The older one has had a more difficult time than the younger as great strides have been made over the years in understanding & treating (& even recognizing – the older one had at least 4 other diagnoses including depression before they finally hit on Crohn’s) this condition. We can hope for this to continue. Best wishes to your daughter & all the family.

  9. 9.

    Tokyokie

    Having the diagnosis confirmed is a good thing inasmuch as now the medical staff can develop a treatment plan. Sorry to hear that she’s sick, but I hope now that you know what it is, things can work out.

  10. 10.

    Betty Cracker

    Best wishes to Team Sooner. One of my kiddo’s friends (same age as your daughter) has Crohn’s, and while it’s definitely a serious condition that requires a lot of attention, she seems to do just fine most of the time. I hope your kiddo gets the best possible treatment and results.

  13. 13.

    jl

    I hope everything goes well with your daughter Soonergrunt. I’ve known people who do well with the disease later in life if they get good and timely treatment. So, I hope that is the case for your daughter. My thoughts and best wishes have been with you.

  14. 14.

    Mary G

    I didn’t email you, but if you need anything from someone who’s been there, feel free to reach out. The new drugs are amazing, even if they cost an arm and a leg.

  16. 16.

    AdamK

    Crohn’s is just awful, and I hate to hear about any such diagnosis. Also, children are kind of likeable, almost as much as pets.

  20. 20.

    Botsplainer

    @MomSense:

    Windows are relatively high, and the porch rail is reinforced and elevated. My concern is the surface area represented by the porch deck-we get. Some good winds through in the winter and spring, and the prevailing pattern could fling the thing into the road.

  22. 22.

    agorabum

    Good luck; we’re pulling for you.
    I know people with Chron’s that are doing well, they just stay away from gluten. Got to find those trigger.
    Also, since it’s a disease of inflammation, one thing that really helps him when something is flaring up is….marijuana. Which was recommended (quietly) by a doctor when he was a teen.
    Not what you want to hear for your kid, but something to keep in mind (and that you likely won’t hear from your medical professional in OK)

  25. 25.

    max

    Today we got confirmation of the diagnosis.

    Well, that sucks, but there are a lot of far worse things it could have been. She’ll be all right. (I dunno about your bank account, but she should be OK. Having thought I had something similar for a few years.)

    You guys really are some wonderful people, no matter what we tell everyone else about you.

    Maybe!

    max
    [‘I was thinking more like, ‘Well, they’re not that bad.”]

  27. 27.

    MomSense

    @Botsplainer:

    That porch concerned me as well! I would be doing the combat creep on it if, BIG IF I could make it up all those ladders to even reach the top.

  29. 29.

    danielx

    Sigh….at least you know and can seek the various treatment alternatives. It’s unpleasant, but the various treatments available are a lot better than they used to be. Sending positive waves your way….

  30. 30.

    becca

    I highly recommend buying the book Prescription for Nutritional Healing.

    It’s a good reference guide for everyone, but especially for those with digestive issues.

    Ask your daughter’s nutritionist about it. That’s how I found it 20 years ago. It’s updated and in its 5th or so issue.

  31. 31.

    Seanly

    @Botsplainer:

    It should be okay if he didn’t follow typical stickbuilt procedures. I would’ve securely attached the wood frame to the extra steel tubes he installed at the top of the silo – like lots & lots of bolts. Also, hurricane straps to attach the roof to the frame. Wind speed increase with the log of height so the wind pressure on the eaves will be pretty f’king high compare to a house on the ground level. Did I mention he should be using lots & lots of bolts?

    With the wind that high up & that nice litle porch to catch wind hitting the silo & flowing up, you’d probably get a significant moment (torque just like the bottle opening graphic on that Dennis Leary Ford commercial)

    Still, it’s pretty cool. But the kid should come down the ladder if the wind picks up…

  32. 32.

    gogol's wife

    @WereBear:

    Yes, it can be a real problem (after a certain point) when they can’t decide whether it’s Crohn’s or ulcerative colitis. Prayers for your whole family — I hope she will be fine.

  34. 34.

    Origuy

    A few years ago, I danced at the Highland Games with some people from my Scottish Country Dance class. I posted a link to the video and some folks here watched it. I danced again this year, so here’s the new video. I’m in the blue kilt with the long grey hair.

  36. 36.

    Botsplainer

    @Amir Khalid:

    And those bars on the balcony rail look like something a toddler might just try to squeeze through.

    He made those pretty tight.

    The guy is eccentric – he loves to stack boulders from a road project. He collects the with his front loader and a large fork lift, and builds his sculptures, preferably larger balanced on smaller.

    He also improved on a pond on the property in a big way, building some walls, bench space, dock, stairs, slide and center-rock platform. My wife keeps threatening to leave me for him so that she can have useless projects completed, but as I keep reminding her, the likelihood is high that he is outside doing these things because his wife hates having him underfoot, and would much rather him be building something stupid, away from her.

    Anyway, he is a genuinely nice guy, even if a little odd.

  37. 37.

    cckids

    @MomSense: Mine would have climbed the railing, just to prove they could. They were both climbers, one before she could walk. I’d walk into the kitchen & find her sitting on the counters. At 10 months old.

  38. 38.

    Botsplainer

    @Seanly:

    With the wind that high up & that nice litle porch to catch wind hitting the silo & flowing up, you’d probably get a significant moment (torque just like the bottle opening graphic on that Dennis Leary Ford commercial)

    I’m thinking that at the trailing edge of a wind gust as it curves around the silo, an atmospheric equivalent of a Venturi effect is likely to magnify torque.

  40. 40.

    GHayduke (formerly lojasmo)

    Good thoughts to Soonerfamily. Must be great to have a definitive diagnosis.

    @Seanly:

    Kid not allowed there as of yet. That porch skeeves me out.

  41. 41.

    OzarkHillbilly

    I tried to say this the other day, but my end was f’d up, so I settled for saying “Good.”

    I will now repeat what I was unable to say then: If you guys need help with her meds, do not hesitate to ask for help. I for one knows what it is like when one’s child’s meds cost $30K per week (tho in my case, Carpenters covered it).

  42. 42.

    Seanly

    @Botsplainer:

    The silo is probably overdesigned for the wind striking the silo. The issue you bring up is vortex shedding when the gusts cut a little more to one side & then the other creating uneven forces & potentially oscillating movements. Due to the short height to width ratio of the silo, I wouldn’t see vortex shedding as a problem (that’s what tore apart the deck of the original Tacoma Narrows bridge) & is a problem with the cable anchors in some modern cable-stayed & suspension bridges. But since it is kinda wide, not all the wind will go around the silo, but some up also & catch the lip of the porch.

    Also, I had meant to send my thoughts to Sooner on his daughter’s prognosis. From what I know, it is much more managable than even just a few years ago.

  43. 43.

    SiubhanDuinne

    @Origuy: I love watching Scottish country dancing! One of my favourite things. I’m in a public place, andwithout headphones (hmm, not sure where I left them) so had the sound turned nearly all the way down, but will gladly crank the speakers up to 11 when I get home, and watch the whole thing again. Thanks so much for the link.

  45. 45.

    SiubhanDuinne

    Sooner, I’m among those who has no direct experience with Crohn’s, so I can’t offer any advice, only white light and good thoughts and warm fizzles and virtual {{{hugs}}}. Sounds as though you’re getting a lot of good suggestions from the Juicetariat, though, and as you and the Soonerfamily sort through them and experiment, I’m sure you’ll find out which work best for your daughter’s and your family’s particular circumstances.

    I do want to second the suggestion made by Elizabelle:

    Maybe Soonerdaughter can do a blog for other teens, in
    time.

    In my comment the other day, I mentioned my great-niece, who has a bleeding disorder called von Willibrand’s Disease. Since she was diagnosed a few years ago, she has been pretty active in her state’s Hemophilia Association (young people’s division) to do outreach, share experiences, give encouragement, etc. with other kids who have vWD and related disorders. She doesn’t do a blog (yet) but she is talking seriously about writing and illustrating a book for other teens. All to say that blogging or similar might be a terrific way to help your daughter cope with her new reality, and do something useful for other scared and hurting teenagers.

  49. 49.

    dp

    Wow, missed that. No personal experience, but I do have friends that have dealt with it. Best wishes to your daughter and the entire family.

  50. 50.

    OGLiberal

    How did you get confirmation? My son got a tentative Crohn’s diagnosis earlier this year but this was based on a scope that he had while in the middle of a C diff infection which followed a pretty bad rotavirus. After he responded so well to Flagyl (commonly prescribed for C diff…it’s an antibiotic) the gastro doc started to re-think the diagnosis – the C diff/rota combo could have cause the ulcers, etc. But months later we’re still walking on eggshells, worrying every time my son (he just turned 7) has a tummy pain. Luckily, he’s had nothing serious since getting rid of the C diff. Just wondering what kind of test may have given you confirmation – and wondering if he had this test(s) as well.

  52. 52.

    ArchTeryx

    @lamh36: It had one of the most atmospheric themes ever made for a horror movie, and was a lot of people’s first introduction to Tangerine Dream. The music belonged in a Space Opera sci-fi far more then it did a Stephen King movie.

  53. 53.

    Packerfan

    Good to know this blog is all about you and your personal self. I guess I should just complain about my own problems and start a free blog for answers. Goodbye Balloon Juice and your wealthy problems.

  55. 55.

    SiubhanDuinne

    @Packerfan:

    I don’t say this casually, but Fuck You. Go Fuck Yourself. I don’t even know who you are, but I know enough to know I don’t really like you. So Fuck Off.

  56. 56.

    GVN

    Hi Sooner,

    Firstly, wish you and your daughter the very best.

    I’m a lurker on this blog, but have been meaning to contact you, I was actually hoping I could talk to you. The reason is that I wanted to describe what my younger brother went through, after a misdiagnosis of Crohn’s. Basically, the diagnosis should be really really solid, otherwise the treatment for Crohn’s could cause complications like it did in my brother’s case.

    Basically, it is extremely important to make sure that the doctors have tested for, and ruled out intestinal TB, since the external manifestation for Crohn’s could be similar, but the treatment would be vastly different. There are scholarly articles on the web that describes the challenges of distinguishing between the two. Example:

    One of the most typical treatments for Crohn’s consists of medicine that works against the person’s immune system. This type of treatment would be a huge mistake if it turns out that the actual problem is intestinal TB. In the case of my brother, it lead to major complications later on, and he needed several surgeries causing unimaginable amount of pain, to recover from the previous misdiagnosis.

    Best Wishes,
    GVN

  57. 57.

    BAtFFP

    GI RN here again. Glad you’ve got a diagnosis confirmed (even though Crohn’s is a bummer) because, to echo what someone said upthread, it’s so much better to know than to not know. Now you have something to aim for.

    If a med doesn’t work, try another dosage — or a different med/med combo altogether. Try being gluten free, or try the specific carbohydrate diet, or try the FODMAP diet, or try eating nothing but hot wings for a fortnight… just keep trying things until you find whatever works best. Hell, I had a patient this morning whose ulcerative colitis looked light years better than it did two years ago. Her secret? We suspect it was the DIY fecal transplant she gave herself at home (stool donated by an unbelievably open-minded friend). Not that I recommend this course of action for your daughter (!), but maybe in a few years the research will lean in that direction. Who knows.

    All I really suggest at this stage is: don’t do anything permanent. It’s always sad to talk with the people who were told that their ulcerative colitis could only be cured by total colectomy, when amazing new drugs turned out to be just a couple years down the road… because you can always change around a meds routine, but you can’t get back your colon.

    Have you and SoonerDaughter seen this article in the NY Times?

    well.blogs.nytimes.com/2008/08/28/voices-of-crohns-disease/

  58. 58.

    Older

    @Packerfan: You think a person has to be wealthy to have Crohn’s Disease? I assure you it is not so.

    Goodbye, good riddance, don’t let the door hitcha on your way out.

  60. 60.

    Suzanne

    I am late to the party, uh, thread, and I have no advice or experience with Crohn’s to share, but I can only imagine how this sort of diagnosis would have just kicked my ass up and down the street when I was that age, and I also can imagine your absolute terror in the face of a child’s illness. My best to the Soonersprog, and to you and the family. Get some sleep.

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