Date has been changed to SATURDAY THE 27TH, NOON – 3 PM
Posts tagged colitis
Running for Crohn’s & Colitis research
I haven’t mentioned on this blog yet, but I am running a Half-Marathon in Napa CA in five weeks to raise money for the Crohn’s & Colitis Foundation of America, which does research on those diseases. So far I’ve raised almost $1000 and have $2,900 to raise in the next few weeks! Read on for more info:
My fundraising site: http://www.active.com/donate/napa09michigan/AAsay
I will be hosting a Garden Party & Games fundraiser at my house on June 28th & will post the flyer soon!!
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Here’s a little info, taken from my campaign letter:
Crohn’s disease and ulcerative colitis are collectively known as inflammatory bowel diseases. Crohn’s disease is a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract, it most commonly affects the small intestine and/or colon. Ulcerative colitis on the other hand, affects only the colon. The inflammation involves the entire rectum and extends up the colon in a continuous manner. Ulcerative colitis affects only the innermost lining of the colon, whereas Crohn’s disease can affect the entire thickness of the bowel wall. It is estimated that as many as 1.4 million Americans have IBD; however, many more suffer in silence due to potential embarrassment and alienation. While IBD can occur at any age, onset usually occurs in people 15-35 years old, and over 100,000 children are affected.
You probably know someone (besides me) that suffers from either Crohn’s or ulcerative colitis. I was first diagnosed with ulcerative colitis in 2001 in my last year of high school just as I began training for a triathlon (which I did not complete due to the illness). I have been hospitalized from complications on two occasions and although I am in now remission, the doctors diagnosed me with pancolitis [the entire colon involved] in 2007. Training for and running this half marathon is helping me to reclaim my life and is a dream come true for me!
My case is mild, while many young people have to go so far as surgical removal of parts or all of their colon just to lead a relatively normal, pain-free life. By helping CCFA raise money for research, the prognosis for IBD can be turned around in the near future.
Together, we can make a difference! As a member of Team Challenge, I have a coach, a training program and teammates to support me. I have committed to a training schedule with additional trainings with my team on the weekends, and I’ve promised to raise at least $3,900 in donations to The Crohn’s and Colitis Foundation of America. I AM MOTIVATED! I AM COMMITTED!! I WILL DO IT!!! (Watch your mail for my post-event news update.)
By now I hope you agree with me about the importance of this cause. Please help support me by giving generously (think about donating the amount it would cost to go out for dinner and a movie with someone special!). A minimum of 80 cents per dollar raised by CCFA goes directly to research and patient support, and your contribution is tax deductible. Contributing money is a powerful way to be involved when you can’t give your time. If your company matches charitable contributions, please include matching forms with your donation. Of course, your good wishes and positive vibes to sustain me in my training and your praise as I cross the finish line will also be graciously accepted.
The easiest way to donate is on my website. It’s quick, easy, and totally secure. The web address is https://www.active.com/donate/napa09michigan/aasay. Or you can send a check, made out to Crohn’s and Colitis Foundation, to my address at 2075 Squirrel Rd., Bloomfield Hills, MI 48304. Please respond by June 30th!
What I’m reading, and other news
Just an update – since I used this blog as a record of my own reading…
Reading: Right now I am engrossed in a few books: Lolita, by Vladimir Nabokov; Small Changes, by Marge Piercy; and the current issue of The Believer. Feed my brain!
Life: I’m right now packing up for my move to Michigan. Monday was my last day as copy editor at the local paper … it’s a little weird to have so much time to myself now, but that’s what I wanted! I’m hoping to leave this weekend, and looking forward to spending time with family and getting myself grounded again.
Naturopath: I realize I never really gave an update after last time like I said I would. Basically, I completed a two month allergy diet and determined that I at least have a sensitivity to SOY. Not wheat, or corn, or milk even. Soy is really what sets off my tummy. Wow. Kind of interesting for a vegan … So I haven’t been eating soy for about a month, and have been eating local organic eggs from my friend’s farm, and I feel a lot better.
My colitis symptoms are for the most part under control, however, I am still on a lot of pharmaceuticals, including dicyclomine (anti-spasmodic), cortifoam (cortisone supporitories – though I’m doing these less frequently), still on azasan 50 mg x2 (immuno-suppressant). The funny thing being that I’ve been doing things that were on my ‘avoid list’ for a long time (i.e. smoking tobacco and drinking alcohol moderately) yet I’ve been feeling healthier than I have in a looong time.
So I think it’s more a state of mind. My stress level is much lower now than it was when I was engaged/married, and I’m more physically active now than I was – walking, yoga, packing etc.
If you get a chance, check out new photos on my Flickr page – I uploaded lots more crochet and knit photos.
As for Barack Obama being elected the 44th president of the United States … WOW. I’m proud to be an American and looking forward to his leadership. I don’t think there’s anything I can say that hasn’t already been said about this historic election, but for me personally it was truly inspiring. America you did the right thing! My faith is restored!
No babies kitty
Helllllloooo wide world of blogging. I’ve been guilty of neglecting you for more than two months and now have come to repent!
No babies kitty refers to the fact that I have discovered that my 6 year old cat likes to be carried around inside a hoodie (like a pregnant belly) so that he can be close to my warmth. It really seems to be the only way that he is happy because then he gets a break from following me around everywhere meowing and rolling around the floor provocatively. But there are no babies in there, only kitty!
OK that’s enought sillyness.
Some quick updates on a varity of subjects …
1) Health: was pretty stable until a colon-scope last week, from whcih I am still recovering. I switched to a new pharmaceutical (Lialda) the same as the Asacol, just a higher dose so I only take it twice a day; plus my immuno suppressant was upped to head off any inflammatory reaction I might have from the colonoscopy. Haven’t been able to get a hold of the naturopathic dr and hesitant to see an acupunturist given all the meds I am on.
2) Crafting: I’ll be in my first two craft shows this month selling all kinds of yummy and inedible crochet treats! Cookies, softies, freeform, you can check them all out at my flickr page.
the first one is the and the second is part of a pottery & art show put on by my good friend Natalie.
3) Relationship: The main one being marriage. I’ve taken on being masterful in the art of marriage, and learning as much as I can about what makes this relationship not just work, but flourish. So that is a great inquiry to be in , and any advice you have is welcome on one condition -No cynicism please! That is a really tired conversation – no wonder the divorce rate is so high!
We are moving this month to an airstream on a farm on the edge of town – a dream come true for a couple of DIY vegetarians trying to ‘get off the grid.’ We’ll let you know how it goes!
Hand Talk
Oh My! I haven’t written in quite a while, so an update is due. Something is going on funky with my formatting here, so please ignore the lack of line breaks …
Though I spend some time here talking about alternative therapies, sometimes there is no replacement for good ole’ fashioned Western surgery … as was the case with my spouse, N, who sliced up his hand pretty good almost two weeks ago. He managed to severe four tendons and a nerve in his right hand, and had reconstructive surgery last Friday for it. [Picture below illustrates where the cuts are]. I haven’t seen his hand since the surgery, since it’s been bound up in a giant bandage and I wasn’t able to go with him to the doctor’s today. Hand So we’ve been pretty preoccupied with that. In the meantime, I had been crocheting up an excessive amount of fake food and small amigurumi animals … a new obsession. And I sold my first handmade item – a crocheted veggie burger where all the pieces come apart (play food). I’ll be putting pictures up on ravelry and etsy soon too, once I secure a camera. Interestingly, I’ve noticed that my creativity/motivation waxes and wanes with the moon – no kidding. The two weeks before my period are the most manic productive for me. Tonight is the night of my presentation on Living with and Healing Colitis/IBD Naturally. In a few weeks, some friends and I will be putting on a food workshop covering a variety of topics – vegetarian meal planning, quick and easy foods, flatbread making, energy of herbs and spices, medicinal teas etc. My section will be on Sprouting and Live Foods and salad dressing method (yes there is a method). See the flyer here –>Food Workshop Flyer This workshop has been a long time in the making, it seems, as it is some of the same group that had been meeting for about a year trying to get a co-op off the ground.We realized, I think, that the main thing we want to accomplish with that is the educate and expand people’s idea of food, and to be conscious about their eating. Since eating permeates so much of our culture, food choices have a HUGE impact on the well being of individuals, communities and society as a whole.
Delicious Tree Bark … Slippery Elm
Ulmus fulva
Thanks to another healer friend of mine, I have discovered the wonderful and delicious slippery elm. I’m not sure why I think it’s delicious – it certainly doesn’t lend itself to much culinary creativity – but the healing properties of this herb are amazing.
A few days ago I purchased said herb in powder form and have been making tea from it a few times a day, between meals. It has the interesting property, like flax, of becoming muciligenious (sp?) – mucus-like and um, slippery – when heated in water and has a distinctive nutty-sweet-earthy flavor. Its main property? To coat, soothe, and heal the GI tract, reducing many symptoms of IBS and colits. Because of it’s soothing properties, it’s also used for burns, ulcers, sore throats and respiratory ailments, among other things.
Apparently, Native Americans used to use it as a ‘survival herb’ … not sure what that means, but it makes my tummy feel happy and full and calm, for which I am very grateful :).
This same friend offered me some very good advice and insights and at his reccomendation, I have restarted enzymatic therapy more dilligently and increasing my raw intake again. What I found most interesting is that he mentioned that the gallbladder is the seat of your personal will. I had mine removed when I was 16 and have had digestive problems ever since due to the bile imbalance (something I didn’t know much about until about six months ago, and am still learning)… from that he accurately predicted that I also struggle to find my voice and assert my will in my own life. Amazing how everything is so interconnected like that.
Naturopathic Medicine II
I’ve noticed a lot of people have been reading my first post on Naturopathic Medicine, so I am posting an update of my progress so far working with a N.D. on my Ulcerative Colitis. I am also going to post a page with some background about my seven year journey, including alternative therapies, with U.C. for people who are looking for support.
I had a phone follow-up call with the N.D. a few days ago after about 5 weeks on the regimen that we specified (see previous post). So far the results have been good, in conjunction with the pharmadrugs. I am finally tapering off of the Predisone, down to 35mg/day from 50mg. I will be off it by mid-February. My colon has calmed down a lot, though not to the “one or two” bowel movements per day that both my dr’s are hoping for.
The tumeric and herbal blend (marshmallow, slippery elm, etc) that I have been taking twice a day is part of a long range plan with stages for the healing and restoration. I will keep taking these for two more months before going on to another blend (not sure what that is).
My diet is almost back to normal – meaning, a high-fiber plant-based diet. I have to watch the fiber though, make sure it’s enough soluable. I’ve stopped eating the cheese and few eggs that I had been for a few weeks – a recommitted vegan – after reading the first 100 pages of The World Peace Diet and being reminded of the horrible pain and suffering involved with producing those ‘foods.’
Interestingly, I have found now that if I am going to eat a lot of fruit or veggies, it’s better to eat them raw with the enzymes intact – then I have much less bloating and unconfortability. When I told that to the N.D., she suggested that I go back to using digestive enzymes only when I have a big cooked meal. I am still taking UltraFlora (probiotics), Iron Extra, and at least 3,000mg of Flax Oil a day. Eating it as just oil wasn’t working so well for me, so I take caplets, but I also eat oil and flax meal pretty much everyday. You can never get enough of that stuff! The N.D. says that eventually the omega-3 rich flax oil is what is going to act as the anti-inflammatory after I am off the predisone.
The goal is not, obviously, to be on a lot of supplements. Right now they are really supportive for the healing process. I’ve gained some weight (about 10 lbs.), either from the predisone or from actually being able to digest food, or both. Either way, I am feeling a lot better and my energy is up despite the drug-induced insomnia (sleeping about 5 hours a night). Unfortunately, I had picked up drinking small amounts of coffee throughout the day to combat my sleepiness (and b/c I like the taste and live with a coffee snob) but now at my N.D.’s suggestion am switching to green tea and yerba mate, both of which have some benefits for UC.
I’ll leave you with this thought: Health is a function of your participation. Participation in life, in your healing, in anything. You have to engage. The energy you put in is what feeds you life. I have been on a crazy roller coaster of participation, throwing myself back into multiple projects and socializing a lot since coming out of ‘hiding’ (translation: hospital) and that has been a large part of my healing.
I realize this may be striking for many who think they need to ‘conserve’ their energy in order for their body to heal, but that is a stingy attitude (a conversation coming from scarcity) that will probably leave you always feeling tired and unsatisfied … If you want an abundance of health and vitality, YOU have to generate it and put it out there. [While being responsible for it and taking care of yourself.]
Also: The second Tuesday in February, I will be giving a talk to a local (Utica, NY) wellness group about healing and living with colitis naturally. Just a little background (more to be up on a page soon), some of the ‘alternative’ therapies that I have benefitted from that I will discuss include yoga, acupunture, BIOSET, reiki, diet and cleansing, enzyme therapy, homeopathy, raw food and juicing, colon hydrotherapy and herbal enemas.
Naturopathic Medicine
N and I took a trek out to Auburn yesterday to visit a holistic naturopathic doctor. The trip was was a bit trying, but well worth it. She took my entire history down, and not just all the ‘medical’ stuff but other information about my life etc. In the end we came up with a plan to support me getting more nutrition back in my diet to support my body’s natural healing ability and to calm/soothe the overactive colon, and we also focused on balancing my hormones that seem to be out of whack.
If you are interested in basic nutrition/nutrition for colitis, this might be of interest to you. The supplements I am on are all capsule or powder form for easier digestion, and include a natural Iron+vit C+herbal (integrative absorption for iron, since I am anemic right now), Integrative Nutrition Multi-V, powdered magnesium (low dose), double dose of Metagenics Ultra-Flora DF (possible the best probiotic out there) and an herbal soother for the colon wich includes slippery elm, marshmallow root, and licorice etc. I don’t usually take a lot of supplements, but it seems necessary right now to restore my health.
Foodwise, she also reccomended eating 1-2 tsp of tumeric a day and up to 3 tbs flax oil a day (since I don’t eat fish). And I’m to go back on my AM smoothie regimen, which includes powdered wheatgrass and maca root with banana. Blended soups, very cooked vegetables avocados, and rice all seem like very safe foods to me right now. Also, I’ve been eating some dairy & eggs with no ill effects.
To balance my menstruel cycle (which we identified as pro-estrogen) she suggested that I eat 2 tsp of flaxmeal a day in the early phase of the cycle and 1000-1500 mg Evening Primrose Oil a day during the latter part of the cycle. We’ll see how that works out, b/c I had been taking both all the time. Also, I’m going to start doing the castor oil packs regularly.
What I found most affirming is that a lot of these things were things I had researched and started on my own, but with not positive reinforcement or certainty that they were the ‘right’ things, so hearing all this from the DR. was great. I have a follow up phone call in five weeks to see how it’s going …
Back into it …
At this point it would be easy for me to throw up my hands ands say “i’m just not a blogger” or “I’m just not a writer.” I’ve let small obstacles get in my way or writing anything consistently, perhaps hiding the fact that I just don’t put the effort in to say what I want to say , post the interesting things I want to post, and in general laziness.
As a brief chronicle of life though, this will serve as an update. Last Friday I was admitted to the hospital and stayed there until Tuesday to treat Ulcerative Colitis … [an auto immune disease whereby the lining of the colon is chronically inflamed] … long story short this is a ‘diagnosis’ that I’ve had for seven years, on meds for six and then actively trying to ‘heal’ myself for the past year, sans pharmaceuticals. While I have made much progress, I ended up in the hospital with the inflammation having spread to my entire colon and a warning that letting it go again could drastically increase my chance of cancer- very painful and scary indeed.
Needless to say, I’m taking the drugs again if only to save my life. I am working out alternative therapies to use in conjunction with the drugs so I don’t have to take as many in the long run. Again I am truly blessed to have such a support system and network of healers and listeners around me – friends and family. All the doctors that I saw were very respectful of my right to choose or refuse treatment and I received excellent care at the hospital I stayed at, even though I didn’t have insurance.
In all, the experience created a space of completion and ‘what’s next’ … Just another wake up call that I can’t afford to live my life without active participation, and that I get to say how it’s going to go. I’m not a victim of circumstance but can create an environment that will help me succeed in the ‘face of’ those circumstances.
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New Books/reading materials:
(obviously I went on a B&N binge)
Adbusters #74
Autobiography of a Yogi by Paramahansa Yogananda
Studying about Tara (the female incarnation of the Buddha)
The Gaia Project 2012 by Hwee-Yong Jang
Still working on Don Juan Road to Ixtlal
Writing –
Article submitted to beturtle.com, but I haven’t seen it up there yet … keep checking for me!
Business plan for bulk herb and tea shop??
– this would be my dream come true right now-
new world dawn 