All Is NOT Lost

Intro:

I’m a thirty-nine year old single lighting technician in the film industry. I was diagnosed in June of 2012 but had mysterious symptoms for years that I blamed on working 12+ hour days and eating off a catering truck. I’ve had two colonoscopies and one partial sigmoidoscopy.

I’ve written a rather long version of my story with UC at www.bonsaiyourego.com. Twitter: @bigmeanbunny

Some more about me:

Other than a sadistic ability to work long hours in weird places I’m an avid yoga practitioner. I live in Vancouver, BC, Canada.

Symptoms:

I currently have no symptoms.

My Story:

I find myself increasingly frustrated with the stories I read on feb162019ihaveuc.mystagingwebsite.com. I sympathize with everyone as I myself suffer from the same disease and know how terrible and frustrating it can be. I also understand how unpredictable auto-immune diseases are and that there are no tried and true rules about managing them. However, I don’t understand the lack of success I’m constantly reading about.

My Doctor initially described my UC as moderate to severe after my first colonoscopy. My first remission was short lived as I made very few changes to my lifestyle and diet and hoped that the Asacol would be enough once I’d tapered off the prednisone. I barely made it six months. My second flare was less severe but my Doctor recommended I start taking Imuran. After doing some reading I decided I’d need to get a lot sicker before I took a drug such as Imuran. I did another run of prednisone (which I tried to taper off a little quicker but not dangerously so) and this time I fully committed to the Specific Carbohydrate Diet and started taking a daily packet of VSL#3. I eat homemade yogurt as well as one store-bought, technically non-SCD compliant grass-fed yogurt containing only milk and bacteria. I also eat sauerkraut and kimchi daily in the hopes of eventually replacing the VSL#3 with probiotic food (or at least reducing my usage to every other day.). There are a few supplements I also take:

AOR Boswellia Serrata Extract (liquid caps only, not the powdered)
AOR Curcumin
AOR R + NAC SR (not necessarily for UC)
Vitamin B, C, D, and K.
Krill Oil
L-Glutamine (10-50 grams a day depending on my schedule)

I didn’t consciously cheat on my diet for the first six months although I know that a little snuck in via the catering truck (what do you mean there’s sugar on the carrots!?!) I’ve allowed only a few occasions of mild cheating in the subsequent four months (a few trips to my favourite Taco and Ramen shops and a few beers on a trip to Spain) otherwise I maintain the practices of SCD. I juice every day (kale, carrots, lemon, apple, beet) – although I don’t believe this has magical properties…. it’s just tasty and a nice way to start the day. I still drink alcohol semi-regularly (SCD compliant) and eat red meat frequently without a problem. I also still regularly work 60-80 hours a week but I have more energy now than ever, in spite of the lack of carbs. I add grass-fed butter to everything I can (even my coffee, which i drink two or three of every day without complication).

This has been an amazing learning opportunity as it wasn’t until I had my hand forced by UC to clean up my act that I realized how much I medicated myself with the food I ate. When I was tired, I ate. When I was unhappy, I ate. When I was celebrating, I ate. And the things I ate were exactly the foods that the data suggests create an environment perfect for Ulcerative Colitis. Without those crutches I was able to really examine my relationship to food and the environment (internal and external) that cultivated the desire to fill myself with the wrong things and for the wrong reasons.

I’m not claiming to be perfect. I’ve failed at maintaining a consistent meditation practice and I still work too much in too high stress an environment. These are all things I’m working on, including drinking less, although for reasons other than my UC; I just don’t sleep as well as I’d like/need with a couple drinks in my system. I just want people to know that all is not lost. After my last scope the doctor didn’t even bring up the Imuran and said I could wait three years for my next colonoscopy unless I had complications. Perhaps one of the many things I’m doing is working and perhaps I’m just lucky the second time around and everything will go sideways sometime soon. Either way I feel like the best thing you can do is be your own advocate. Have the discipline to do what you need to do to make yourself healthy and believe first and foremost that you CAN be healthy. It sounds cheesy but you’re worth it.

written by Roger W

submitted in the colitis venting area

Hey Roger,

Way to go with tackling the symptoms you were diagnosed with and dealing with for even longer.  I think you’ve got a great way of handling things, and definitely keep us posted on how things continue for you.  I wish you well with trying to move away from some supplements and “supplementing” with natural foods as well to get the good stuff you need/want.

There’s one thing I wanted to let you in on, and its no big secret, but since you’re an important member of the site, you aught to be clear on…

You wrote in your story:

“I find myself increasingly frustrated with the stories I read on feb162019ihaveuc.mystagingwebsite.com….I don’t understand the lack of success I’m constantly reading about.”

So here’s the deal from my point of view.  And bear in mind I’m the person who has added the 2,000 plus stories to the site (every single one) and I’ve read multiple times each one, and spoken to thousands upon thousands of UC’ers over the 5 years since starting the site.  Anyways…

The most common time that people come and visit the website is…drumroll please… when they are the middle of a flare up.  Either right after their diagnosis when they are still trying to figure out what the hell UC is, or when symptoms come back.  So that said, you are actually a somewhat rare case (I’m sure you’re not suprised by that amigo…I read your blog you billionaire you!), and by “rare” I mean in when you are actually sending in your story with regards to your current UC symptoms.

So what does all this mean.  Well, whatever you want it to mean.  It just is what it is, and as I’ve certainly found out, people with UC need a place to vent what’s on their minds with other UC’ers since there aren’t many good places to do that…yet.

Keep on rocking what you’re doing.  I think you’ve got a great thing going (super similar to what I’m up to, and yes, it does work well for many).

And do me one favor, (now that I’ve setup your account and added your picture to the system…) WRITE SOME COMMENTS on other people’s stories after you read them!  I’m super positive others would like to hear from you!!

Adam