TASTE: My New Life Without Food

Eighteen months ago I was diagnosed with CIPO (chronic intestinal pseudo obstruction). Since then I have been on TPN and have not been able to eat anything.

I recently wrote a book (TASTE: My New Life Without Food) that chronicles my story and explains how I have learned to cope with not eating in a food saturated culture. You can go to www.facebook.com/tastegordonmeier and click on 'ABOUT' for more information about the book.

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I'm sorry about your CIPO diagnosis. I was where you are now two and a half years ago. I had G and J tubes which I could hook up to a vacuum device under my bed to decompress my stomach and intestines, and on TPN for nutrition, but was still spending more time in the hospital than out with CIPO episodes. I frequently would vomit stool during these episodes. The decision was made to remove my small intestine, as it wasn't functioning, and the thought was that with an enterectomy I might find some relief from the distension that had my waistline at a five foot diameter. My surgeon at Mt. Sinai brought in a transplant surgeon to make sure that when they did the enterectomy, they would not do anything that would makes me an unsuitable candidate for an intestinal transplant if and when I developed complications from long term TPN use. On my birthday I was wheeled into the OR, expecting to wake up with no small intestine left. (I lost my colon to colonic inertia back in 1997). The transplant surgeon believed that my intestine could be saved, however, and in a ten hour surgery, they removed mesh fragments and adhesions from prior surgeries, resected the small intestine where it was too scarred to function, and then did a small bowel tapering surgery to bring my small intestine down from its 6" non-functional diameter to a more normal 1" diameter. I woke in ICU with a vent, and was a pretty sick cookie for a while there. My pre-op weight was 161, post op weight 128 -- 33 pounds of waste was removed. At any rate, over time I began to improve and left the hospital for rehab on a GI soft diet. Since then I was able to get off TPN, the feeding/venting tubes were removed, and now, 2-1/2 hours after my miracle surgery in May of 2011, I have not been hospitalized once for CIPO. I take a lot of motility agents to keep my small intestine moving, and I have my bad days of distension, pain, and nausea, but only about three or four bad days a month. I've had real trouble keeping weight on, and have just been taken off TPN after a year on it, because I'd dropped weight to 132 (I'm currently at 144). Right now we're trying me on "super" hydration -- one liter per day of saline solution with six additives to it -- vitamins, etc. I've dropped four pounds in the two and a half weeks off 2days TPN per week. but am hoping to be able to at least stop the weight loss if not gain back the four pounds. I just wanted you to know that there IS a surgery that can vastly improve your quality of life, if your surgeon will do it. You may not be condemned to a life without oral intake. Most of my nutrition comes from Boost shakes, rather than solid food, but I'm getting botox injections every three months so that I am able to keep solids down again (before the botox I would vomit up even something as inoffensive as rice) so I supplement my Boosts with solid food. I only know one other person who has had this bowel tapering surgery, and have unfortunately lost contact with her, so I don't know how her surgery went. I'm hoping that she had the same remarkable recovery that I did. Good luck to you.
Love and Light, Candace

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Candace - Wow. I hadn't read your dramatic story. Congratulations on getting off the TPN. I know that has been one of your goals.

Gmeier2 - Congratulations on writing your book and getting it published. What a productive way to process such a significant change in your life.

I admire you both.

T-girl

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Thank you, Candace, for the details about your surgeries. You should get a medal
for bravery and your surgeon one for expertize. what insurance do y9u have,
by the way; if you'd rather not answer, okay. I shouldn't ask such personal questions.
You can speak to almost any intestinal problem with all you've been through.

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Gmeier2,
Sorry to hear about your CIPO and your inability to consume food in a world where you can't ride down the road or watch TV without being reminded of food. I'm sure your book would be very interesting to read. I've often thought about hospitals passing out books written by patients of different illnesses for patients to actually read how someone else coped with what they themselves are having to go through. Perhaps the path along their journey would be slightly more manageable.

I think the benefit to some patients, not all, would out weigh any small cost which could be listed under the psychological aspects of a patients well being. I often said, hospitals should have videos days or weeks before discharge that a patient or caregiver could watch to learn what will be expected of them after returning home. The patient or caregiver should be given a copy to take home and review it as necessary. It could be in any of the worlds languages. There are many people who can't read, but they can watch.

Congratulations On Your Book
Errol

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Candace,
Like I've said before, you never cease to amaze me. I knew you had been through a lot, but to share your story as you did here to inform and possibly help is remarkable. It's an outstanding story of a Dr/patient relationship which very few find.
For your Dr to bring in a transplant surgeon to do the procedure which I bet was a top transplant surgeon just goes to show what love your Dr has for you.

You Have A Remarkable Quality...........and as usual, the first to respond...lol
Errol

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This a GREAT book and I recommend it to anyone that has any kind of motility disorder. Thanks for writing this and being so open about the true struggles we deal with daily with food. A real blessing to me.

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Gordon Meier sent me this book and it is the best. I suggest everyone read it. Very helpful to me and my husband. My husband is not able to eat orally at all, just tube feeding. Thank you Mr. Meier for your generosity. How are you doing?

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Sheila and RTGP--thanks for your encouragement. It was my privilege to write the book. So glad it was helpful for you. I am doing well, continuing to take one day at a time. That's all that's promised to any of us. We don't know what 2014 will bring for any of us but we can all stay full of hope for a better day tomorrow. Blessings!

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gmeier2,

First, was wondering if you wouldn't like to give me some of your personal time for sort of a Q and A for my own blog, which is expanding as the traffic is increasing dramatically and my own ideas are exploding in my head in my own niche in helping others cope with chronic illness. I'll send a friend request, as I have something else to ask, but as far as sharing this treasure with us, THANK YOU SO VERY MUCH!. I am also writing a book along the lines of living with GI dysfunction, but it's very different as my writing is *odd*...and I didn't want to be alone in pioneering the way to bring awareness wot what it is to live in a manner most cannot fathom: never being able to eat (though I am still praying there is a way, but even if not, it's still ok).

Second...do you ever do autographed copies? That's more the literary geek in me. I have a small collection of autographed first additions (Christopher Reeves' "Still Me", Portia De Rossi's "Unbearable Lightness", a few others) and I see this not only as another opportunity to add another piece of meaningful work, but as a chance for mentorship even just reading something like this.

Candace,

I cannot remember, did your own work did published? If so...same questions as the new poster above? <3 I also didn't know all of those details and I am so, so, so grateful to have you with us here to share your insight, story, and unflinching lack of self pity in your posts and encouraging responses to so many of us.

With love,
Danielle

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Danielle--if you send me your mailing address (you can private message me at my email address: gordon.meier@hopebrunswick.org) I will be happy to autograph my book and send it to you.

Gordon

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Gordon,
I received your book and I just got done with chapter one. Such warm reading on a very cold day. You have expressed so much in the first chapter that I can relate to; I have to go and finish now.
Thank you, Gordon.
I'll post a full review soon!

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Candace,

This is off of this subject but how is The British Poetry of WWI (Centennial Edition) coming along?

Raechel

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The book has its Library of Congress number and is scheduled for a February printing. Believe me, when it comes out, I'll let everyone know, and make my offer to autograph copies if people buy them and want a signed copy.
Love and Light, Candace

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