We’re in this Together

Satya’s Story

Satya is special to me; we connected through Human Para Foundation and discovered lots of similarities: we were diagnosed with Crohn’s Disease the same year, share the same Crohn’s Disease manifestations, are under the care of the same GI and live in the same state, just a few hours apart! Satya is not only my Crohn’s twin, he is my friend. Here is Satya’s story.

Before I was diagnosed with Crohn’s, I used to roam a lot; I love to travel, dine at different places and explore different cuisines. I used to weigh 220+ lbs., after Crohn’s Disease I can definitely say I can’t travel because of fatigue, less hemoglobin and no interest in doing anything. I used to eat a lot before Crohn’s, but now I can barely eat a portion of food. Life has changed drastically in my case.

In 2011, I developed classic Crohn’s Disease symptoms of severe abdominal cramps and diarrhea; perfect timing as I had just began working on my Master’s Degree. Initially, I was told it was nothing, yet was still very ill when I relocated for my job three years later.

I located a GI who agreed I needed further testing; after my first colonoscopy, I was diagnosed with Crohn’s Disease. It took three years for someone to take me seriously, perform conclusive testing and make a simple diagnosis, yet I hear this repeat scenario from other Crohn’s and Ulcerative Colitis patients.

My GI prescribed the usual textbook predisone, Azathioprine and Mesalamine, which eased my symptoms for a few years. When symptoms reoccurred with a vengeance, my GI performed another colonoscopy and discovered there was severe inflammation (pancolitis) throughout my colon. He asked me to start biologics; you can imagine my frustration with this disease, I had just married!

I started Humira and after unsuccessful treatments, developed peri-anal fistulae, bringing an onslaught of constant pain, drainage and back to back surgeries for seton placements. This Crohn’s Disease manifestation made me homebound and I had to take time off from work. This created a financial burden as I did not have the money to pay for medications and procedures.

My GI referred me to his colleague whom recommended I replace Humira with Entyvio and I agreed. Unfortunately, two months later I was still very ill and my GI recommended I switch to Stelara; I also was given two blood transfusions as my hemoglobin was 7. Less than one year later the Stelara remained ineffective in controlling the flares; I considered alternative testing and treatment and being out of options decided to have this unusual test. Under the care and guidance of Dr. Ira Shafran, I tested positive for Mycobacterium Avium subsp. Paratuberculosis (MAP), a known cause of Crohn’s Disease! Why had I never heard of this before?

Dr. Shafran prescribed anti-Map therapy by way of specific antibiotics known to destroy MAP and I have been on his therapy regimen for 5 months; these past 5 months have been intense as my body reacted with classic Herxheimer reactions of continued flares, joint pain, and fatigue. These symptoms happened as a result of MAP die off and are extremely common. Last month, I noticed improvements in abdominal cramps and joint pain but am still having flares.

I’ve tried the Specific Carbohydrate Diet (SCD) with no success and still suffer from muscle pain, insomnia, nausea, diarrhea, fatigue and fistula pain/drainage. The RMAT therapy caused me to develop arthritis in my wrists and ankles, which was severe over the course of these five months, yet has finally begun to not affect me as much.

As my treatment progresses I will write more about my experience.

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