waiting for the doctor
April 30 Tuesday 4:30 PM
I am waiting for Dr. Jeffrey McCurdy and he will review my case with me.
Monday I had a CAT scan here at the Mayo Clinic. I had not eaten for 24 hours, due to the requirement to be fasting for my appointments. I think because of that, I ended up fainting.
I could tell I was feeling a little sick, and the staff was incredible — they were so wonderful. Anyway, I was wheeled into the CAT scan room, and my technician James even joked with me about me fainting (word had spread!).
They are all incredibly nice here at the Mayo Clinic. The buildings and the grounds are really quite spectacular. It reminds me of an unknown Mecca of sorts, or a place where people go to pilgrimage. It is interesting that my son, Sam, is on a pilgrimage called El Camino de Santiago, in Spain, at this time. There are so many people here, from all over the world—many of whom are very sick, or caring for a loved one who is sick—and there is a sense of the fragility of life around me here, but also the indomitable spirit of the patients in search of extending their lives or, as in my case, improving the quality of life.
So, while I’m waiting for Dr. McCurdy, I am prepared to take in the news that they will recommend that I take medication. On the other hand, they may suggest some alternatives. I have no idea!
After the affable, and highly intelligent 30-something, Jeffrey McCurdy, MD, arrived he sat down and showed me my blood work results (spectacular were his words!), and my CAT scan results (not so great, in his words), the medication, IMURAN, is recommended by the GI team here at the Mayo.
My Tpmp is normal, so they say I can take the maximum dosage. (Thiopurines are a class of drugs that suppress the immune system. Examples include azathioprine, mercaptopurine, and thioguanine. These medications are used to treat diseases such as acute lymphoblastic leukemia, inflammatory bowel disease, and autoimmune disorders. They may also be prescribed to patients who have had organ transplants to help delay or prevent organ rejection. This test detects the activity level of the enzyme thiopurine S-methyltransferase (TPMT) in a person’s red blood cells. The activity level of TPMT is associated with the ability to effectively metabolize thiopurines.)
Dr. McCurdy explained that I have a high “Rutgeerts” score of 3 on my colonoscopy, which is indicative of inflammation that they usually treat aggressively.
Blood work checks will be frequent to monitor my side effects. Uncommon side effects are rare, but can be severe. Flu-like symptoms (most common), headaches, joint pain can be severe, fevers, pancreatitis, elevated liver enzymes (blood work will be checked for this). There is also a possibility of a decrease in my white blood cell count, which helps you fight infection. They expect it will go down… Mine is currently at 6.4 Leukocytes (might go down as low as 3.0).
Very uncommon risks are as follows: Cancer risk for skin cancer, so skin exams yearly are recommended. Also, there is an slight increase in the possibility of lymphoma—When I asked him to explain, he provided an analogy of a busy street corner, with 2 out 10,000 passersby might have lymphoma. With IMURAN, this chance increases to 4 in 10,000.
Of more concern is the inflammation in my body. I can develop perforations, strictures, flistulas, and abscesses due to bowel perforations. Having active inflammations increases my risk of cancer, which is exceedingly uncommon in the small bowel, but worth noting. If Dr. McCurdy were in my shoes, he said he’d do both medications at once: Remicade and IMURAN. But, he also spent hours reviewing my case with Dr. Tremaine, and since I’ve been 7 years out of surgery, I have a better argument for not taking the two types of medications recommended by Dr. Corey Siegel at Dartmouth. In 2010, my histogic (tissue) endoscopic test was minimal, showing only 4 ulcers, scoring a “Rutgeerts” score of 1.
For me to decide medications, it is highly individualized, and they know I’m in line with alternative medicine. Given my individual history and predications, they recommend a one year duration with a colonoscopy to show results. (I.e., one year before investigations.) using the maximum dose of Imuran.
Right now, I would need to be on it indefinitely. When medication is stopped, the disease tends to comes back, and some people may no longer respond to that medication should they go off and develop a recurrence.
In Crohn’s disease, they know that for causes genetics is involved, and environmental factors. However, there is no known cause or cure. Parasites activate a certain arm of your immune disease, but it is very unlikely it would cause a disease such as Crohn’s. No single organism is ID’d as a causative agent. Fecal transplants and worm therapies are being studied. Only case studies available: meaning when studies are positive, they are quick to publish, so there is sometimes a publication bias. It is important to report positive-negative outcomes to determine efficacy. He said he worries about safety with introducing pathogens (like worms!); and they need more information on safety profiles.
The SCD diet (specific carbohydrate diet): science on this is not conclusive, according to Dr. McCurdy, and diet depends on state of bowel disease.
They know that for many patients animal fats, simple sugars, and shellfish can contribute to the disease. My disease is characterized by inflammation.
Dr. McCurdy has little experience with herbal remedies. He said to be careful with anti- inflammatories like Advil and Ibuprofen, because they can make Crohn’s worse.
Lots of his patients use Vitamin D (in patients that are deficient), with good results, but not using therapeutically, though there are recent studies on vitamin D and Crohn’s specifically.
If I wait, I’m running risk of developing strictures, flistulas, and a possible bowel obstruction. I already had an internal fistula in 2006, but I could develop cutaneous (out of skin), or vaginal, fistulas, or other connections from one organ to another, which are symptomatic of Crohn’s. again, he noted that I am symptom free, except for the endoscopic and CAT scan tests.
Dr. McCurdy just did a presentation on new therapies that use different mechanisms of action in clinical trials. These are years out, he said.
I have swollen lymph nodes around my disease site: any time you have inflammation, your immune system starts in the lymph nodes, like in a common cold when your lymph nodes swell. I have inflammation around 10 cm of the neo- terminal ileum.
They don’t want me to loose anymore small bowel because of problems with malabsorption, especially Vitamins and minerals.
So, that’s the report…I guess I was hoping that my CAT scan would have been better. It is really hard to live with a disease and not see improvements.
My next stop is the Integrative medicine round, and I will explore a lot of alternatives—for sure!
Stay tuned for Day 3, where I visit the Stress Reduction & Relaxation Clinic at the Mayo…