Wednesday, June 29, 2011

How I Got Here

I keep this blog mostly to chronicle how I feel emotionally about my disease, and to give my friends and family a way of keeping up with my progress.  But I have been encouraged by others undergoing helminthic therapy to share the more clinical details of my journey for the benefit of those who may be considering the same treatment.  Toward that end, here's a timeline of my experience with ulcerative colitis for those who are interested in how I got here....

September, 1997--diagnosed with ulcerative proctitis, after a six week battle with unrelenting diarrhea, cramps, bleeding, etc.   After diagnosis and a quick round of high-dose prednisone, I rebounded and remained stable for a couple of years on a relatively low dose of sulfasalazine (the generic 5-ASA treatment that's been commonly prescribed for IBDs since the diseases were first described in the 1930s.)

August, 1999--pre-wedding stress led to a mild flare, treated successfully with an additional course of prednisone.

Somewhere between then and now--my disease became more and more difficult to control, prompting a change in diagnosis to left-sided ulcerative colitis and requiring more and stronger maintenance meds, plus more frequent rounds of prednisone.  Started on Asacol (a higher-dose 5-ASA than sulfasalazine), azathioprine, hydrocortisone foam enemas, 5-ASA enemas, 5-ASA suppositories, all-liquid diets, acupuncture, and finally, Remicade infusions every 8 weeks.  Remicade originally prompted remission, but when I developed jaundice, we discontinued both the Remicade and azathioprine.  Maintained remission for several months, but I started to flare again in July 2008.

August, 2008--restarted Remicade and azathioprine at 5 mg/kg every 6 weeks.  Stabilized, but have not achieved remission. 

Sometime in 2009--increased dose and frequency of Remicade.  No change in symptoms.  Up to 5-7 loose b.m.'s/day, high urgency, cramping, bleeding and mucous.  Mornings are the worst; I'm usually (but not always) ok if I can just make it to lunchtime.

March, 2010--began serious consideration of helminthic therapy, while also exploring other options such as specific carbohydrate diet, complete colonectomy, nutritional therapy, and other "wacky" treatments like fecal transplant.  (Some of these I considered more seriously than others, needless to say.)  After months of much research, consideration, and consultation with AIT and others being treated with helminths, finally scheduled a trip to Canada to take shipment of 1,250 whipworm ova for November 2010.  Just before leaving, I was informed AIT would no longer be shipping to hotels in Canada, and I would need to reschedule my trip to England.

January, 2011--Traveled to England to dose with 1,250 TT ova.  All meds remained the same, except for prednisone, which was increased to 10 mg/day to help stave off potential side effects.  No change in symptoms or noticable reactions to this dose.  (In addition to Asacol, azathioprine, and Remicade, I also take calcium and lutein to counteract the long-term effects of prednisone on my bones and eyes, Vitamin D and a good multi-vitamin for general health, and iron supplements to guard against anemia due to blood loss.  All told, I usually take 22 pills each day.)

March, 2011--Made a commitment to improve my diet.  Varying theories employed to varying levels of success, but generally, trying to cut down on sugar and wheat, sodas, and dairy.  Spent the spring and early summer reading about all kinds of dietary approaches to disease and general health.  If I had the discipline, I would be eating a totally plant-based, wheat-free, sugar-free diet.  Something to continue to work on.

May, 2011--contacted AIT to let them know there had been no change in my symptoms.  Sent stool sample for testing, which confirmed no whipworms present.  Meanwhile, my GI doctor reviewed my blood work from previous 6 months looking for increased eosiniphil count (a signal of helminth infection) and found none.  Colonoscopy performed, which was third form of confirmation that I had no worms.  Results of colonoscopy showed 8 inches of active (VERY active) inflammation.  Began daily doses of enemas and suppositories.  Second stool sample sent to AIT for confirmation #4 of no worms, while also making plans to travel to Vancouver for a second protocol of whipworm treatment.  Theories as to why worms didn't make it: I had an immune reaction that expelled the eggs, the eggs were not viable to begin with, I am deficient in the enzyme that tells the eggs to hatch, I ingested something that compromised the eggs, they just didn't like me, the moon was in the wrong phase when I took them, I didn't say the right chant after ingesting them.....

June, 2011--current symptoms: 5-7 loose b.m.'s, gas, urgency.  Bleeding and mucous greatly reduced since beginning enema/suppository treatment one month ago.  Started using GI Monitor app to track symptoms.  Traveled to Vancouver, where I took possession of 5 doses of TT ova.  Ingested a dose of 200 on-site, and will take the other four progressively larger doses monthly through October. 

It's kinda tough to see my entire experience of the last fourteen years collapsed into such a small space.  Between the lines, you can read in lots of cycles of frustration, depression, guilt, empowerment, strength, hope, regret, acceptance, humor, and pride.  Most days, I have all these feelings rolled up into one big burrito of chronic illness.  I'm ever-mindful, however, that this experience has been a blessing because it has brought some of the most amazing people into my life, I've learned so much about myself, and it has all made me so much more aware of what people around me deal with every single day.  But I'd trade all of that in a heartbeat to make myself healthy again, if somewhat more blissfully unaware.