Krista – Crashing MAP’s party with RMAT
When I was diagnosed with Ulcerative colitis/Crohn’s disease six years ago, I was ignorant to the extent to which it would change my life. It altered all plans I had meticulously pieced together for a cohesive and creative existence within the world. The continual road of ups and downs not only affected me, they impacted my family, finances, and career. I knew people with UC/CD before I was diagnosed, yet had no idea of the daily struggles they faced, from immense pain and fatigue to brain fog to how your life stops when you have a flare. I lost my independence, financial nest egg, numerous jobs, relationships, and eventually myself.
For 6 years I endured various specialists, each with a different theory of causation and routes of care. I researched, explored, talked with people, and tried most everything available for treatment, from pills and biologics, to supplements, special diets, yoga, and exercise. Most of these either did not work long term or at all, and I lost hope with all of the false hopes I was given. I became accustomed to hearing the phrase “that normally doesn’t happen” in reference to my disease progression and treatment reactions. I began with a mild case of UC/CD, which worsened with time and almost cost me my life. Twice.
I became too familiar with fistulae and seton placements as I would develop seven during the course of 6 years. You know you’ve lived when the hospital staff and nurses recognize you in the OR. Sometimes I wondered which end they recognized more! I was told fistulae were no big deal and that people lived with them for years; the GI who offered this nugget of hope enjoyed an active lifestyle of being able to sit comfortably, ride a bike, swim, and otherwise enjoy being in a public body of water.
To write that colonoscopy preps and imaging procedures get easier with time is a lie. Stumbling dehydrated into the hospital after two memorable days and one memorable night of an all liquid diet and a confection flavored miracle drink, precluding a finale of intestinal fireworks and wonder is not for the weak. All those with UC/CD are warriors.
By divine intervention, I was introduced to the possibility of having a bacteria called Mycobacterium avium paratuberculosis (MAP) and how it may be the root cause of my bowel woes. After thorough research and cautiously raised hopes, I located a doctor who listened to me, asked questions, treated me like an equal and agreed that I should be tested for MAP. Finally, a GI who didn’t discount me or my illness, but rather one who welcomed and encouraged my questions! This GI was frank and did not offer false hopes. This GI was a keeper, my 7th to be exact; there won’t be a need for an 8th.
My story of beginning anti MAP therapy, specifically called RMAT in my case, was different because I presented with few symptoms: fatigue, short-term memory loss, sense of urgency (plus accidents) and 6 unamused fistulae. I was technically in clinical remission when I began therapy and I did so because I no longer wanted to band aid the symptoms; I wanted to eradicate the problem: MAP. While I will never know if MAP caused my UC/CD, I believe it did as my pre-diagnosis days were filled with world travelling where exposure could’ve happened at any time.
I currently take Rifabutin 150 mg 1x/day and Clarithromycin 500mg 1x/day as my anti-MAP therapy (RMAT per my GI), as well as Humira. My experience with RMAT is of interest. I’ve had numerous, textbook Herxheimer reactions, plus a few uncommon reactions, like blue teeth and tongue and the perpetual tan look of a female golden Adonis. People have asked about my orange tan. Being of Anglo Saxon lineage, I have a pale complexion. To be tan is to be odd, at least in my world.
Most days find me having trouble sitting (slow clap for fistulae) and difficulty walking/opening things due to joint pain from RMAT. Restful sleep is a figment of the imaginative, an aching spine and joints herald me into nights of restlessness, much like a Mexican jumping bean in the bottom of a mason jar. I have possible drug induced lupus from biologics plus trouble with short term recall; surprisingly, the only time this isn’t a problem is when I walk my dog or find myself in the bathroom, since I can remember why I went in there.
My initial MAP numbers were unremarkable because biologics have suppressed these partying thrill seekers. Five months later however, my cultured MAP have all night raves, trivia contests and ever increasing runs via pimped out El Camino’s to the local pizza joint or laundromat. All I know is that there is full on proof that these fiends are swapping recipes and hair dye as often as they replicate and their micro colonies expand in my serum. Talk about having kids, MAP strives to have a big family and they start early.
5 months into RMAT therapy and there has been a rather significant change – one fistula has closed! My colo-rectal surgeon recommended surgery for each fistula as the only means of getting rid of them. I did not have surgery. This is reason to rejoice and makes sense, since MAP can be found in large numbers inside fistulae tracts. Earlier this year I was considering extensive, invasive fistulae surgery with no guarantee that it would work, along with the surgery possibly causing incontinence. Surgery now is a thing of the past thanks to RMAT!
I take this all in stride, knowing that I would rather have a few orange years than a lifetime of UC/CD.