Hello everyone,
I've been following this forum since I was diagnosed with Crohn's in 2011, but just now decided to start posting.
I am currently in the US Navy. I was 30 yo when I first presented with symptoms (diarrhea, weight loss, abdominal pain). Interestingly, I had just met a new friend with Crohn's the month before. Prior to that I had never even heard of it. Anyway, it took a couple months for navy medical to do much of anything, they thought it was just a bug. After multiple trips to the ER, they finally did a CT and got a GI in to see me. 24 hours, a colonoscopy, and a CT scan later, I was diagnosed with Crohn's. They started a prednisone taper and then put me on remicade and 6mp.
After 6 months of doing well on the treatment, I started to develop severe joint pain. I was also due to transfer which meant that I needed to check in to a new command in a different area and a different doctor. The circumstances led me to stop the treatment and try my own thing.
I started by running at least three miles a day, took a lot of my calories by liquid, wheat grass, and probiotics. I was great for about a year and a half. Work got busy, I fell out of my routine and I flared up around November (in Chicago).
After another prednisone taper, they put me on humira. I again did well until the next winter, but flared up again in December. After another prednisone taper, they tried azathioprine alone. This time I didn't even finish the taper before I flared up again. I just started yet another taper, and they want to do humira and azathioprine together.
I've done a ton of research and am still currently in denial that this can't be fixed. I've even tried acupuncture! I'm very intrigued by the research being done on anti-MAP therapies, and I've also found some info on the possible correlation to the anthrax vaccines that I've received (last dose was a month before Crohn's showed up). Unfortunately the VA doctors aren't.
Recently, my father suffered from a pulmonary embolism due to deep vein thrombosis (DVT). Through the process I discovered that his father also had it, as well as 4 of his siblings. For the first 10 years (started in boot camp) in the navy, I had terrible rashes on my feet and ankles. Medical gave me all kinds of creams, nothing worked. I chalked it up to a sensitivity to the mold in the showers on the ship and dealt with it. The rashes stopped when the Crohn's showed up, but I was also taken off the ship, so I didn't make a correlation. But in light of recent new genetic info, I've discovered that the rash was identical to a DVT rash. Couple that with finding out about ischemic colitis and the possibility that circulatory issues with the colon can mimic CD, I've decided to reach out.
I'm mainly posting to the forum to find info in regards to ischemia or other misdiagnoses of Crohn's. I've found a case study indicating that individuals that were diagnosed with Crohn's eventually presented with occlusions of the mesenteric arteries. Once the occlusions were rectified with aortomesenteric bypass, the patient is symptom free.
There are other similar studies, but not as many as I would like. There is a lot of information indicating that crohnies are more susceptible to DVT, but I'm curious about DVT, blood clots, and/or vasculitis as one of the many possible CAUSES of the disease (since we don't actually have one yet). I've read multiple posts from folks that have had DVT with Crohn's, but none that have indicated whether or not the anti-coags have had any influence on their Crohn's symptoms.
I would much appreciate any advice/literature/experience on the topic if it's out there. I'm also willing to share as much as I can about my own experience.
Sorry for the lengthy post, but I've been working on it for 3 years...
