This article brings out the importance that news articles should include alternative approahces to disease treatment and health management; this will enable patients to be more informed of options.
I read with interest The Journal’s two articles on ulcerative colitis on March 9, and could relate to many of the experiences of the interviewees, having been diagnosed with ulcerative colitis, first, then Crohn’s colitis, around 15 years ago. Mine came on quickly, and violently.
At first, my gastroenterologist told me I had six inches of good colon and wanted to cut out the rest which, would also have meant an ileostomy and having a bag). At the time, I was terrified and a shadow of my once healthy self, having lost 45 pounds with a hemoglobin reading at 58 (120 is normal) and having suffered all of the symptoms mentioned, and then some. Not the strongest bargaining position, and yet bargain I did.
I was born with a colon and wanted to die with one, indeed, for me, surgery was not an option — certainly not until I had actually given myself a chance to heal. Yet it was recommended by my then doctor as first line treatment: remove the symptoms — nice, but no thanks, if that meant removing my colon.
This illness, when acute, is brutal. As with any illness, one is propelled into another country with new currency: I had energy to make a cup of tea, or drink a cup of tea, but not both. It is hard to imagine, and frankly this level of exhaustion is difficult to convey.
After being presented with four options (have surgery and a bag, be medicated like an AIDS patient, do nothing and die, or go on a course of oral steroids and get a blood transfusion), I opted for No. 4 and got four units of blood and a 16-week run of steroids. Not a way to live for too long, but it bought me time and motivated me to deepen my investigation of alternative healing modalities. And so I did.
Slowly I recovered my health using Chinese medicine — acupuncture and Chi Nei Tsang –implementing dietary changes (eliminating gluten), suitable exercise (aquacize and yoga), and psychological and physical strategies devised by and borrowed from elite athletes (my approach) as after all, I suffered from the same complaints as mountain climbers and marathon runners at the zenith of their endeavours — electrolyte imbalance, dehydration, diarrhea, lack of oxygen to the brain, foggy thinking, lethargy and extreme fatigue.
Who cared that my marathon was getting up a flight of stairs?
Nonetheless, achieving almost anything was a celebration and provided me a decent alternative to being “less sick,” as that seemed that the best I could do in conventional medicine.
Ten years later, my new gastroenterologist was blown away to see how effective the combination of approaches had been. When he scoped me, he said that while I still have about 30 per cent of my colon implicated in active disease –which would flatten some of his other patients as it once flattened me — and that I have almost no debilitating symptoms. He was astonished and delighted, and open to reading some articles I then provided him on Chinese medicine. Nice!
I noted in The Journal article you only speak of conventional medical alternatives, which are, by their own admission, limited and only ever partially effective at providing treatment for the chronic aspects of the illness. Moreover, many treatments offered cause side-effects almost as unsettling as the illness. While conventional medicine is excellent at diagnosis and can be miraculous for acute disease, it bears up very poorly in the day-to-day management of symptoms.
The alternatives do not.