What I’ve Learned in the Last 5 Years with Colitis

Intro:

This is my fifth year of living with UC. In the last 3-4 years, I’ve read about and tried numerous different remedies that have worked for others, even if temporarily. I’ve experienced a couple of remissions with each new one lasting longer than the previous one. Will the next one be long term?

My Colitis Experience:

To keep it short, here’s my history:

– a careless, happy-go-lucky guy; now at 35 slightly re-shaped by the arduous UC journey

– i was a very active athlete throughout my entire life; as a child i’d play so hard outside with my friends that when i got home, i’d fall asleep in the foyer before i got to take my second shoe off :) i loved being outside and still do

– i’d get sick each winter since i was a kid, had severe acne as a teenager and took accutane at 18; 12 years later i would be diagnosed with UC. do i wonder about the connection? i did at first but it does you no good to dwell on the past, you have to live the life you have now! otherwise, you’ll die wondering what could have been. by the way, my sister took accutane as well, smaller dose, and thankfully she’s healthy!

– i was officially diagnosed in 2007, a month after getting married and on the day of my wife’s birthday. i noticed symptoms 6 months earlier but ignored them as i was not in pain and the onset of the disease was very slow; i didn’t attribute it to anything at the time but i was somewhat depressed and stressed as my wife was making her way through medical school. my living situation was stressful for many years and the stress took its toll on me and my disease, more so than i probably still realize.

– i had food poisoning a few times since getting UC and that seems to have aggravated my condition; took some antibiotics which i wish i had not

– i was on Asocol for about a couple of years, which did essentially nothing. I was eating the SAD diet until things started deteriorating and then i went into full-blown research mode. I read Breaking the Vicious Cycle, the SCD diet and was instantly hooked and hopeful. After over 2 years of trying, making countless batches of yogurt, boiling bone broths for 72 hours, eating organ meets like hearts & livers, giving up my passion for brewing beer and numerous other habits (health is most important, so as hard as it was, I was prepared to do anything), the diet did not seem to work to stave off flare-ups. I was hopeful and determined. I’m thankful for the book though, as it taught me to look at how I treat my body. no loss there for sure, knowledge is power

– i was so anemic that i needed two iron infusions, third one might be on the way unless this flare ends soon

Here are other things I’ve tried, not in any particular order:

– consulted with Raman Prashad (who wrote a great book called Colitis & Me) and is remission due to the SCD diet; he actually met Elaine Gottschall before she passed away; Raman is a fantastic person full of good will

– David Klein’s Self-Healing Crohn’s and Colitis – 6 week remission but flared again and ended up on prednisone. DK’s an interesting person and determined that his diet is the only way to cure Ulcerative Colitis but it has not worked for me in the end. hope it does for others

– Meditation, yoga, hypnosis, acupuncture, Chinese herbs, VSL#3 , manuka honey, participated in research studies, including one on eliciting a Relaxation Response; don’t underestimate the power of your mind. meditate! i do every day and i know it will be my saving grace one day. for inspiration, read Meghan’s story: http://meghantelpnerblog.com (she’s free of Crohn’s Colitis) as well as Bob: http://ihealedmycrohnscolitis.wordpress.com/

– i tried water and juice fasting that worked for Paul Nison (http://healthwatchman.com); he’s a fantastic guy. He had Crohn’s Colitis as well, no longer. unfortunately, raw fruit and vegetables even in the juice form tare me apart! one thing he taught me was to have faith that you’ll heal. unless you believe it, it will not happen

– i traveled to Brazil to meet John of God after seeing him on Oprah. what an amazing trip that was, even if i came back with a nasty bout of diarhea :)

– most recently, after trying the SCD diet and ending up on 6MP for 6 months, I tried going vegan. I was in remission for 6 months after stopping 6MP and taking 1 Lialda a day. my doctor said that 1 pill would do nothing for me, at least 2 are needed for some kind of response.

To wrap up, a few words. I’m currently in a flare for two weeks, always happens around December (low vit D? missing the sun?). I will most likely end up on Prednisone soon as I’ve bled quite a bit and I’m getting weaker.

What I’ve learned about my body (yours is not mine, so this might not apply to you):

– first and foremost, place trust in yourself; do not look for someone to cure you as all the healing power is within you
– experiment and listen to your body, be a good observer
– stress will hurt your body, slow down, evaluate, relax
– water/juice fasting does not work, made my body weaker and less prepared to fight flares
– raw fruits and veggies do not work well for me during flares
– sugary fruits don’t agree with me
– rice porridge slows things down a bit
– meat was too acidic and tough to digest for me and burned my behind during flares
– stay positive – i know this is a hard one because just last year i was freaking out, high anxiety, having panic attacks; doing meditation and relaxation techniques to slow down your breathing helps a lot.
– uc is here to stay, it’s the reality for now; your life has changed and will in many ways. it is up to you to decide how it will affect you.
– find a uc support group if you have a tough time, it’s a good excuse to get out of the house and get some fresh air

That’s all I have for now. A bit wordy but I wanted to share some of this information with you. I’m sure I missed many points as this is just off-the-cuff and I have tried many many different ways to fight this dis-ease.

Hope you’re well.

written by “The Bird”

submitted in the Colitis Venting Area