Friday, December 17, 2010

Welcome!

First time visiting this site?  Welcome!

Let me orient you a little.  First, I want to point out that it's all about UC and IBD here.  And I know that can get a little boring, believe me.  But I specifically created this blog as a place to put all my ulcerative colitis "stuff" so that I might have a chance of creating a little UC-free space in my real life. 

So if you want to hear about the other aspects of my life, like how much I love to cook and watch reality t.v. (not necessarily at the same time), or my struggles to find just the right haircut, or my thoughts on what makes the perfect cup of coffee, or how I like to spoil my dog, my husband and my cat (in that order), you'll have to talk to me in person or on Facebook or whatever.  But if you're interested in what's new in my own battle with UC, well, this is your first stop.

More specifically, this blog is about the pursuit of a new, relatively untested treatment for UC: helminthic therapy.  Also known as whipworm parasite, I'm planning to introduce 1,000 ova of these little fellas to my system in January in hopes they will be a game-changer in my ongoing slog against this stupid disease.  I'll be using this space to document my progress on this treatment for other folks who are thinking of pursuing this course of action.

Please note that under "For your information" I've included some links to what I think are some really good resources on the topic of IBD, including a couple of folks who are also keeping blogs about their experiences with helminthic therapy.  I'd like to point out that most of these people are waaaaay more versed on the in's and out's of this treatment than I am, so I trust a lot of what they have to say.  Plus, there's even a link to a recent allusion to IBD on Jon Stewart's Daily Show on the Colon Comrades site.  We're going big time now!

Now that you know a little about the site in general, I'll just post a quick update on my status.  It's been a lousy week.  I had a really rough night on Monday, when I was woken from a sound sleep with the realization that needed to get to the bathroom RIGHT AWAY and then didn't quite make it.  So there I was, in the middle of the night, cleaning myself up, and then when I got back to bed, I was lying there tensed up with abdominal cramps and the lingering sense that should I fall back to sleep, I just might find myself making another mad dash.

So.  Tuesday was spent on the sofa all day, desperately consuming all the fluids I could, and trying to catch some sleep between more trips to the bathroom.  It's gone steadily up from there, but still, as of yesterday, I was feeling vaguely achy and flu-ish, which usually means I'm having trouble staying on top of the dehydration game.  So I continue to try to remember to drink, drink, drink.

In this last week before Christmas, I'm hoping for a steady increase in well-being so I can participate fully in all the HO-HO-HO that will be going on.  That, plus a little more snow, would be just the ticket for a happy holiday!

8 comments:

  1. nancy! i can't wait to hear how this works for you. i have been in remission for a little while now (knock on wood!) but i am also still on all these meds. curious how it works, IF it works, and how your experience is. please know that i wish you the very, very best... including pain-free, easy going mornings:) i hope and pray that this works for you!!!!! merry christmas! xo - renee

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  2. Hi, Renee! Thanks...I'll keep you posted on my progress. It's exciting stuff. I'm glad you're doing well now, but hope reduced meds are in the cards for you sometime soon too!

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  3. Yaay! I"m glad that you're blogging again- it's a great thing to clear the head, I tell ya. Boo! THat you had a bad week. Yippee that you are brave enough to try helminth therapy!

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  4. I've bookmarked your site and look forward to reading your updates. Kirk, Lily and are keeping our fingers crossed that this parasite does you some good!

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  5. NANCY!! Hello fellow UC-soon-to-be-whipworm-ed-up friend :)

    I didnt know you had already started your blog! Great news! I'm glad to have at least one other blog out there devoted to UC and human whipworm now.

    I hope it's okay if I link to you! It looks great and I'll certainly be eager to see how it all comes out.

    (hopefully smooth and solid ;) )

    Haha, sorry couldnt help it. We IBDers are awful.

    My best wishes to you and of course, email me if you have any questions that you think I could answer.

    I'd say that with a full dose of whipworm (about 1,500 ova), you'll know probably at about 2 months or so how it will be for you.

    Cheers!

    - Mike

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  6. I also tried helminthic therapy and I actually just had a colonoscopy where whipworms were visible: http://www.facebook.com/photo.php?pid=343694&l=3fafe30f94&id=100001039256330

    I am in a complete remission from my Crohn's disease and I was able to stop taking Humira. Where do you live Nancy? I am asking because it might be cheaper for you to try the other providers instead of flying to Europe.

    You might be interested in following my updates on facebook. Here's a note I wrote recently on helminthic therapy: http://www.facebook.com/note.php?note_id=171652952862714

    Also, this wiki site has a lot of info: http://opensourcehelminththerapy.org/

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  7. Thanks for all the great resources! I added a link to your "Intro to Helminthic Therapy" page under my For Your Information section. My focus area is the personal and emotional side of all this, so I really appreciate other folks who step up with more scientific info.

    I'm afraid it's too late to change course on my therapy location--I leave on Thursday and am really looking forward to the experience. Thank you so much for putting that option out there. There may be others who want to explore it.

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  8. Nancy... I love you! Squidly

    You know when you are done if you collect your whip worms in a jar my Dad would probably put them on the shelf with the tape worms he took out of people in Vietnam back in 1969 when he ran the MASH unit. He still has them.

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