Life with Crohn's, Crafts, and Cruisin'.

Healthy doesn’t always mean “healthy.”

Healthy doesn’t always mean “healthy.”

I like to consider myself a healthy person. I eat healthy, I practice yoga regularly, I don’t use plastic Tupperware, I buy the “dirty dozen” organic, I stick to grass-fed beef… the list goes on.

However, for the last 4 years or so, I’ve been plagued by odd digestive issues that, for years, doctors couldn’t (or wouldn’t) diagnose. It first started with sharp pains that would only really happen when I would eat fried food. So I cut that out immediately. Then it morphed into pain in my esophagus for which I had an Upper GI scope where they found ulcers in my throat and stomach. However, nothing at that time was done. Once those healed, my symptoms evolved into odd waves of nausea and pain that would hit me every day at around 4pm and last for the rest of the evening. That particular symptom lasted for a year or so.

Until finally, fast forward to October 2016. I was hit smack dab in the face by a stomach virus (we think.) I couldn’t keep food down, I had severe stomach cramping, and after 8 days, and 2 visits to the diagnostic clinic where I got anti-nausea pills, it subsided. The scale said I had dropped 10 pounds, but I was told, and thought, it was just some form of viral gastroenteritis, and I would be clear.

I thought wrong.

Exactly one month later, the severe cramping and vomiting came back, but at hyper speed. I was in so much pain that I was shaking and sweating. My husband took me straight to the Emergency Room, where I had a CT scan and they found a partial bowel obstruction. They kept me for 3 days, and did an upper GI scope and a colonoscopy where they took biopsies to send out for lab work.

I was pumped full of crazy antibiotics to clear out any infection, and hopped up on super strong pain meds. After my 3 day visit (with amazing nurses and doctors, I might add) I was sent home to “get better.” But for 2 solid weeks, between my hospital stay and my follow up with the GI, I was miserable. I couldn’t stand up straight because my stomach hurt so bad, and my abdomen was so distended, I looked 6 months pregnant (even though I had dropped 20 lbs in a month.)

At my GI follow up, he confirmed that the biopsy results came back with a pretty resounding “yes” to Crohn’s Disease. Now, I had always had my suspicions that something like Crohn’s Disease was what was going on, but since the other doctors I had seen in the past didn’t seem too concerned, I put the thought to the back of my mind.

Crohn’s Disease is one of the two types of Inflammatory Bowel Disease (IBD) characterized by chronic inflammation of the entire digestive system (from top to bottom.) Here are some statistics that I pulled from https://www.crohnsandcolitis.com/crohns on who Crohn’s affects.

Here’s another really weird fact, one that has put me on my current crusade… IBD is mostly found in developed countries. According to this medical abstract:

The emergence of disease consistently observed as a society becomes modernized or developed may be attributed to westernization of diet, changing antibiotic use, or improved hygiene status. These factors are linked with changes in the gastrointestinal microbiota which, in turn, may affect development of the immune system and influence the risk of disease occurrence. Geographic variations within developing countries suggest that the strength of influence by risk factors in a society varies greatly. Studies of IBD in populations of developing countries where there are opportunities to prospectively collect changing exposure data over time may provide clues to the disease etiology.

So, what I interpret that as, is:

Something they’re feeding us, or putting in the water, or air, or the pollution from industrialization, or the frankenfoods we’ve been exposed to… SOMETHING is causing the rise of these immune and autoimmune diseases. And for a disease they know little to nothing about, how can they prescribe medicine to essentially mask the symptoms?

I read stories daily about people diagnosed with some form of IBD that have had meds pushed on them immediately, and had multiple surgeries to keep removing sections of their damaged bowels. They have ileostomy bags, and have to frequent the hospital for infusions and more surgeries. I saw a stat once that 70% of Crohn’s patients will have to have surgery at some point during their disease. That’s bullshit.

I have taken a stand with my GI (who is a D.O. and amazing and not a pill pusher) to come to an agreement that we are going to try to do things my way. No meds, strict dietary changes, healthy lifestyle. Something that can help.

And so here we are. Since my diagnosis, I’ll be honest, I have not gotten “better.” I still am taking this disease day by day. I recently was so anemic that I had to have an immediate iron infusion. My intestines make INSANE noises (in meetings, might I add) that sound like aliens have invaded my body (which… maybe?) I sometimes wake up with such abdominal pain, that I revert back to my hunched over posture until it passes, or have to stop walking and breathe through it for a second until it fades.

But now, I’m trying some new things that I truly believe are working!

  1. Back on the Whole 30. By removing all inflammatory foods from my diet for at least 30 days, I can give the ol’ digestive system a break and a chance to heal.
  2. Gluten free– This is part of the Whole 30 as well, but even when I’m off of the program, it’s something that every doctor (the GI, my primary, and the hematologist) have all asked that I do. Gluten is super inflammatory and my system right now just can’t take the extra work it has to provide to digest it properly.
  3. Super strong probiotics. The current ones I take have 8 strains of bacteria, that I take up to 4 times a day. My primary care physician is sure that the strong antibiotics I took at the hospital completely wiped my gut microbiome, and I need to work hard on building it back up with the healthy guys.
  4. CBD Oil. This one is new to me, but the cannabanoid oil from the hemp plant has been known to help with inflammation and pain.
  5. Mangosteen Juice. I kept reading some really riveting testimonies of Crohn’s and Colitis patients that have used this wonder-fruit to reverse the damage that IBD can cause. This one is also new.
  6. Daily B12. Apparently I don’t absorb nutrients like my body is supposed to at the moment (hence the anemia) so I have to replenish the B12 in my system.
  7. Meditation. I have a new mantra that I find powerful and clear. “Peace within my body.”
  8. Yoga. This has been my medicine for a very long time, but truly harnessing the power of healing is my next step in my practice.

 

How this whole experience has changed me:

  • I’ve become my own health advocate– I ask the questions I want answered, I do my own research (sometimes for hours on end,) and I ask about alternatives to meds.
  • I’ve become hyper aware of the pharmaceutical industry and its flaws– I just don’t trust it. There are so many things that we don’t know about disease, yet we’re pumping money into an industry fueled by greed for the promise of “fixing” a symptom, but not the root issue of the cause. (I don’t think all medications are the devil, I just don’t trust big-pharma and what they represent.)
  •  I have started to study up on our food production– Yet another industry fueled by and flawed by money, our food production is seriously fucked up. Factory farming, lab-made chemical additives, stuff that is BANNED in every country but ours… how is this allowed?
  • I am learning about this disease– I am on a freaking mission to understand this thing inside and out. How can doctors tell me and everyone else that they’re not really sure what causes it and that there’s no cure. It’s so new, and it’s springing up at a RAPID pace. There is something happening here, and I will not just settle with the “fact” that this is my future. Absolutely not.
  • I’m getting Yoga Teacher Certified starting in July– this whole ordeal has forced me to drop my ego and realize that I need to be kind to myself and have some more balance in my life rather than just gogogogogogogo. I want to get certified for so many reasons, but one of the biggest is to talk to people just like me who are dealing with a chronic illness that just takes it out of them, and give them some means to help cope and heal their bodies.

As the title of this post suggests, healthy doesn’t always mean healthy. But I’m not giving up. Instead, I’m learning and growing and finding out what works (or doesn’t work) for my body and my disease, and I’m on a crusade to fix things for myself (and hopefully help some others along the way.)

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