New Community, Fecal Transplants, Orange Chicken and Freeway Worship
Tonight I had the privilege of watching a fellow Crohn's patient's dream come true. A good friend (Callena T.) told me about a movie screening of the film "Wanted: Crohn's End", a film about Crohn's Disease and featuring the stories of several patients who have actively sought alternative treatments to help them live healthier and move toward a cure. The film was the dream-child of a local man who has Crohn's Disease and has worked toward making this movie happen for quite a few years. After the film he and one of the patients in the film were available to lead a quick question and answer time. There was good conversation among those present. I learned much from the film as well as the discussion.
If you are interested in viewing the film, it is a fledgling project by a local filmmaker so I would encourage you to visit the website below and support him by paying a small fee to watch the movie. It was exciting to see Reid Kimball's dream of his film coming alive on the big screen happen tonight; kinda inspired me to continue working on my book. There are also snippets of the film available on YouTube. Also, consider giving toward the Crohn's & Colitis Foundation of America and/or their Camp Oasis program.
Right away as the film began I related to each of the patients. They described how they first got sick with Crohn's or Colitis, the pain and lack of energy, the faking well-ness, the desire to not kill yourself but to just go to sleep and be done, the hopelessness of knowing that "this" is "normal" and it is not going away, the side effects that are often worse than the drugs themselves. I found myself with moist eyes as I remembered many poignant moments in my own journey very similar to the ones they described.
Much of the film was about the deadly cost--physically and monetarily--of the drugs issued to so many patients. I learned that the drugs I have been on are among some with
"black box warnings". A black box warning is the strictest warning put in the labeling of prescription drugs or drug products by the Food and Drug Administration (FDA) when there is reasonable evidence of an association of a serious hazard with the drug. All of the patients in the film sought to get off of the typical drugs because the long-term consequences (basically, destruction of bones, cancers, lymphomas, lupus, etc.). These patients instead tried alternative treatments: the GAPS diet, hookworms, and fecal transplants, and avoiding acne drugs.
Yes, you read those things correctly.
It was exciting to see things like kombucha mentioned as being very helpful as I have been experimenting with this lately. I am not quite ready to start brewing it myself but after hearing more about it tonight, and feeling like I am noticing positive results from it myself, I am feeling like I can not be quite as stingy and can start drinking more of it each day. Special thanks to Laura B. and Tammy B. and Pam S. for getting started on the stuff!
It was also good to see some of the diets mentioned as ones I have heard of for many years. I diagnosed myself with Crohn's Disease based upon my own research mostly from reading Jordan Reuben's book, "The Maker's Diet". After my diagnosis, while I was still in the hospital, a church friend (Sarah H.) made sure I got a copy of the book "Breaking the Vicious Cycle" featuring the Specific Carbohydrate Diet. That book was mentioned in the film tonight. I guess I am encouraged to continue doing some research and editing of my diet.
"black box warnings". A black box warning is the strictest warning put in the labeling of prescription drugs or drug products by the Food and Drug Administration (FDA) when there is reasonable evidence of an association of a serious hazard with the drug. All of the patients in the film sought to get off of the typical drugs because the long-term consequences (basically, destruction of bones, cancers, lymphomas, lupus, etc.). These patients instead tried alternative treatments: the GAPS diet, hookworms, and fecal transplants, and avoiding acne drugs.
Yes, you read those things correctly.It was exciting to see things like kombucha mentioned as being very helpful as I have been experimenting with this lately. I am not quite ready to start brewing it myself but after hearing more about it tonight, and feeling like I am noticing positive results from it myself, I am feeling like I can not be quite as stingy and can start drinking more of it each day. Special thanks to Laura B. and Tammy B. and Pam S. for getting started on the stuff!
It was also good to see some of the diets mentioned as ones I have heard of for many years. I diagnosed myself with Crohn's Disease based upon my own research mostly from reading Jordan Reuben's book, "The Maker's Diet". After my diagnosis, while I was still in the hospital, a church friend (Sarah H.) made sure I got a copy of the book "Breaking the Vicious Cycle" featuring the Specific Carbohydrate Diet. That book was mentioned in the film tonight. I guess I am encouraged to continue doing some research and editing of my diet.
A big part of the film and the discussion after involved being proactive in your care. Finding what works for you diet-wise, limiting drugs, staying positive, avoiding stress, Emotional Freedom Technique, participating in community. A woman who was present broke down crying over her daughter who is undiagnosed and struggling. Several spoke up about a local support group which I am considering dropping in on periodically. The emphasis on finding community where you share a commonality makes a lot of sense.
I realized thru the evening how fortunate I have been, and yet I also know that at one time I was one of the sickest out there, that my doctors were constantly amazed at my miraculous recovery in the months after my diagnosis and surgery. For a long time Doctor Gonenne would parade me thru his office when I came for appointments in order to show his staff how much I had improved. At one point the one young woman was asked how much she had weighed at her worst and she answered 109 pounds and people shook their heads and were surprised; I smiled to myself: I was 79 pounds at 27 years old, at my worst, when I shouldn't have survived.
Tonight I remembered that although I do not always make the best choices diet-wise or drug-wise, I am super blessed by an awesome medical team. I also recognized how important my faith has been in this journey. I know that my disease(s) have forced me to lean on my God and view life from an eternal perspective and that because of these things my faith is stronger. But sitting and listening to these others I realized how much more difficult the journey would have been without my Jesus. The last couple of years I have felt some nudging to get involved in Camp Oasis, a camp for kids of various ages with Crohn's & Colitis, sponsored by the Crohn's & Colitis Foundation of America. Participating in this community tonight confirmed for me that I need to pursue this because, like tonight, I recognized that my journey, particularly the role my faith has in it, has something to offer someone else. I came SO close to doing Camp Oasis this past summer but, alas, other parts of life.
I left the film screening feeling energized and realizing that I have grown complacent the last few years in grabbing this flesh by the thorn and making my Story work for me. Over half of my life I have been sick and much of that time was hell. In 2008 I was saved from the pit and suddenly experienced as close to "normal" as ever and lived that way. And then 2014 and 2015 knocked me back down with a whole new auto-immune disease (Pyoderma Gangrenosum), shaking me back down to the nothingness of early 2008. Once more I have been given a new lease on life, saved from the pit once more from yet another disease that tried to destroy me.
As I walked out of the theater I went straight to the food court, even passing Darth Vader and some Stormtroopers and Imperial officers, to get me some Panda Express orange chicken...once of my favorite guilty pleasures. I was quite aware that any of the people in the movie theater would totally judge my food choice. But I didn't care, and still don't. As much as I need to make wiser choices I also trust my beloved Doctor Gonenne and he says I can eat whatever I can get away with. I am blessed with this "new body" in that I can get away with stuff that many in my shoes cannot and my philosophy is to just seek awareness and adapt where I can without being drastic.
Sitting in the food court and eating and then walking to the Escape I had a song pop into my head: "I Want to Know You" by Sonicflood, my favorite Christian worship group in the late '90s. Their CD was one of my most-used and favorites to rock out to in my car back when I commuted up and down the freeway during college. It was strange how the song just popped into my head and so I searched it out on my Amazon music player on my cellular device. I ended up purchasing the entire album and blared it all the way home. Such a great album! Full of authentic, passionate worship! I remembered so many of the songs, even though I had not heard them in a very long time. I even remembered, almost word for word, the invocation and interlude prayers done by the band!
Definitely a divinely inspired evening.
Hey, thanks for being along for the journey. =)
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