Having returned from Mayo, I want to post a quick update…. I’m good, under the circumstances—not going to let having this disease change things too much. I saw my GI at Dartmouth yesterday. He was surprised I went to the Mayo Clinic, but understands how seriously I consider taking DNA-altering drugs, and drugs that affect my immune system, etc. His colleague, Corey Siegel, is doing a study of using a different kind of Tumor Necrosis Factor (Alpha) inhibitor (big fancy words I am loving to say, but suffice it to say it is human and not mouse-tissue based); the results of which will be available in a few weeks. They want me to wait since I have no symptoms, and waiting is what I do best!
Dr. Bensen said if I take the drugs, they are seeing the best results with the TNF(A) Biologic (he mentioned Humira) (also Remicade and Cimzia), combined WITH the immunomodulator, 6MP, for the best results for full remission, at 40-60%. He said if I take the Imuran alone, my chances of getting results are not as efficacious. This, I do understand. He feels the Mayo Clinic’s recommendations are not fully in line with his, and Corey Siegel’s, “front-line” offense approach.
In the meantime, I am (seriously!) looking into taking whipworms….you know how much I love creepy crawly things! Seriously, there is a new study, and you can read about it here.
It is nice to be back home in Vermont…. The day I left Rochester, Minnesota, there was a blizzard and they got around 13 inches of snow in MAY!
I am working on a longer post about the stress reduction class I tool, the Eastern medicine and work of Amit Sood, MD, and the integrative medicine at the Mayo Clinic.
Here are a few more photos from Mayo (top, Fish, by Gordon Gund a patient; bottom statue study for the “Les Bourgeois de Calais,” by Aguste Rodin…a huge statue that is very powerful and stands in the middle of a busy atrium cafeteria looking anguished; and last but not least, the dancers I really fell in love with in the hallway near the blood work laboratories!)…
Happy Spring! Time for “a second opinion”
for this Crohnie patient….
The Dartmouth GI team, headed by one of the top IBD doctor’s in the country, Corey Siegel, MD, wants me to take two heavy-hitter drug combos—an immuno-modulator approach that I don’t feel comfortable with taking. Here is my (layperson, granted!) reasoning: since my quality of life is so good, and my symptoms are episodic and stress-induced, mainly (the docs don’t really like talking about stress as a disease-trigger, as it is so hard to quantify I think), my gut is telling me to wait and continue with my naturopathic treatment; and, quite frankly, I almost prefer surgery to the idea of taking such life-affecting medications…
I want to add, that many of my Crohnie and uc-er friends are successfully being treated on these drugs, I have nothing AGAINST the drugs, and if they help and the symptoms are minimal, that is fantastic! Since many of you have asked (!), here is what they want me to take…. Not one, but TWO drugs, given the severity of my disease….. Read on:
According to WebMD, Remicade (or infliximab) is used to treat certain types of arthritis (rheumatoid arthritis, arthritis of the spine, psoriatic arthritis), certain bowel diseases (Crohn’s disease, ulcerative colitis), and a certain severe skin disease (chronic plaque psoriasis). In these conditions, the body’s defense system (immune system) attacks healthy tissues. Infliximab works by blocking the actions of a certain natural substance (tumor necrosis factor alpha) in the body. This helps to decrease swelling (inflammation) and weaken your immune system, thereby slowing or stopping the damage from the disease. Remicade is given by infusions, through the vein (it usually takes 2 hours) every 6-8 weeks.
The other drug they want me to take is commonly called 6MP. It is taken In pill form. This medication is used with other drugs to treat a certain type of cancer (acute lymphocytic leukemia). Mercaptopurine belongs to a class of drugs known as purine antagonists. It works by slowing or stopping the growth of cancer cells. This drug may also be used to treat Crohn’s disease, ulcerative colitis, and lymphoblastic lymphoma.
In patients using infliximab along with azathioprine or 6-mercaptopurine for the treatment of Crohn’s disease, there have been rare reports of an extremely rare, often fatal cancer (hepatosplenic T-cell lymphoma).
Sounds pretty scary, huh?
Infliximab works by binding to tumor necrosis factor alpha. TNF-α is a chemical messenger (cytokine) and a key part of the autoimmune reaction. Cytokines are proteins that are produced by cells. Cytokines interact with cells of the immune system in order to regulate the body’s response to disease and infection. Cytokines also mediate normal cellular processes in the body.
In our book, Jessica Black, ND, my co-author, discusses the cellular balance in the body to achieve and maintain a balance of homeostasis. In patients with IBD, the need for hormone balance and regulation is also important. In our book, she says,
“Every organ in the body depends on, and influences, other organs—everything is interconnected in the body. This is why whole body approaches to healing often work better than treating just one system, or one symptom.”
This naturopathic approach to whole body, and more holistic/lifestyle, healing is what I aspire to. Since I do not want to take the aforementioned drugs, and my overall health is so good, I feel better able to exlore other options. Emeran Mayer, MD, who wrote the Preface to our “Living With Crohn’s & Colitis” book, recommends a second opinion. (Here is the link LWC_Pages_EmeranMayer to his inspiring write-up.)
I am leaving for the Mayo Clinic in Rochester, Minnesota next Sunday, and I will be there for almost a week. It will be interesting, to say the least (!), to hear what the GI team has to say about my case. i will be seen there at 8:00 a.m. on Monday, April 29th by William Tremaine, MD.
Let the adventure begin. I am not scared, or alarmed—just looking for a more integrative approach to my personal patient care. My gluten-free, sugar-free, diet has been going really well—I feel healthier overall, and my research shows that sugar can create problems in the gut, and may even be linked to leaky gut syndrome, so it has been a great practice to switch to only using honey for sweetener. Here is a great video by Mark Hyman, MD, about why “functional medicine is different than conventional medicine” … it is VERY inspiring, not to mention PRACTICAL!
A group of supportive friends and family . . .
One thing I have going for me, and encourage my IBD-friends to be part of, is the online community of Crohnie and uc-ers that I am privileged to know and appreciate. Sometimes we make each other laugh! Take my Crohnie-friend, Christina . . .she is an awesome survivor of many surgeries and health problems, but when I read her interview with Sarah Chouiery of The Crohn’s Journey Foundation, I laughed out loud at the “embarrassing moments” section! Christina’s blog is a great resource for some welcome humor! I will have it on my iPad as I travel to Minnesota next week….
This photo, below, was taken in my hometown of Brattleboro, Vermont…. Is it a real dog behind the statue of the Buddha you may ask?