Having a Flare-Up
When I was first diagnosed with Crohn’s disease-ulcerative colitis, I remember what a frantic time it was for me. I had three jobs (typical when you live in a rural area) in order to make ends meet. My daughter was applying to college (stressful, to say the least), my father was battling bladder cancer, and I was teaching at a local college where none of the ‘real’ faculty knew my name.
I remember it was April, 2006, and when Emma went off with the college tour, I was too sick to even walk! I had to put the seat back in my car and just lie there.
It is easy to feel sorry for oneself during a flare, that’s for sure!
Don’t you just sometimes feel alone, and like throwing in the towel? Do you ever feel embarrassed that you might have an accident — like when you are walking around a college campus with a bunch of high school seniors and their eager parents?
The obvious answers are all yes: we are only human after all, and sometimes a change in seasons can stir up some allergies, a stressful work period can add fatigue and emotional turmoil to your life. It’s okay, though!
I decided just recently, in the midst of a painful flare, that I am not going to let this disease beat me down—I have too many things I want to do in my life! Take Carrie Johnson, the woman’s rowing champion who has Crohn’s–she is pursuing her dream. What about Pearl Jam’s Mike McCready,’or football great, Dave Garrard? They are living with chronic disease, and not letting it run their lives! Me, I’m just an ordinary girl, but I work hard and I’m taking this latest flare day by day…
It wasn’t fun last Wednesday night to be awake most of the night, cramping, feverish, disoriented, feeling the horrible blockage within, knowing I could be headed towards surgery again—feeling incredibly sorry for myself! I stayed in the rest of the week, gradually introducing safe foods back into my diet…
We need to pace ourselves, and admit that a cure isn’t imminent; we need to share our stories and not feel so alone; we need to listen to our bodies, and slow down when they tell us to. Sometimes, though, life is unpredictable and we have to forge ahead…accepting the good and the bad, while maintaining a good attitude and being proactive in our self-care as patients.
I sold a book last week, for my job as a literary agent—it is called “Wonder Woman Isn’t Bulletproof,”‘by the indomitable Shannon Galpin—she is out in the world, trying to make it a better and safer place for women and girls in Afghanistan. Perhaps my flare-up had something to do with my high stress level (bringing a book to auction!), but I wouldn’t change the joy of telling this amazing woman we had a book deal for anything! You can read why I’m so excited here.
Happy Spring—we still have snow where I live
So, it’s back to reality: lots of rest, fluids, I made a naturopathic doctor’s appointment for next week, scheduled a massage (have to budget carefully!), cooked healthy “post-flare-up” foods (rice, broth, soft-boiled eggs, gluten/wheat-free toast, peppermint tea) and ate small amounts while chewing thoroughly, slept almost 20 hours….healing, and feeling better already!
¡Hola! My fellow Crohnies, uc-ers, readers . . . My friend, Shelly, asked me what was up, so I thought I better get on here, and write something! Having Crohn’s disease AND colitis, and other autoimmune diseases is not a walk in the park, but my girlfriend, Cindy, has something called myasthenia gravis, and she is really struggling. Last night, I had a home jewelry party as a way for her to raise money to help defray some medical expenses, and the upcoming mortgage (she ‘s a single mother of three on disability). It felt great to help HER! I think helping others is the way to help ourselves….
So now, the update!
Crohn’s flare Novemeber 30th Rx.
Started low dose naltrexone, high potency turmeric, increased probiotics, and something called Glutamine (the last 2 on an empty stomach), along with high potency turmeric (cur-cumin—yes, an herb!). I told my GI I was doing this…. And now it is over two months later, and I feel great!!! This is definitely NOT a drug or infusion with potential side effects (though LDN is not FDA approved), rather it is a more “integrative” approach to medicine that should be practiced everywhere. I’m lucky, in that my co-author, Jessica Black, is a naturopath who is up to date on treatments that are less invasive, but effective! Worth looking into, don’t you think?!
After I started writing this post, I looked up Glutamine, and this is how it works:
With the anti-inflammatory, Cur-Cumin, and the beneficial effects of increased probiotics, the Glutamine works as a binder in my gut to help decrease the inflammatory cytokines. It is an amino acid. The probiotics are live culture micro-organisms that help to balance the gut micro flora. This is good stuff! The doctors, the researchers, and patients are beginning to take all of this gut bacteria science news pretty seriously.
“The human gut teems with bacteria, many of their species still unknown. They help,us digest food and absorb nutrients, and they play a part in protecting our intestinal walls. Gut bacteria may also help regulate weight and ward off autoimmune disease.”
I strongly feel that taking a regimen of potentially carcinogenic drugs is not the way I, personally, want to go! I HAVE taken Prednisone, and currently I am on a low dose (3mg) naltrexone protocol (this is NOT FDA-approved), and I just know it is working.
A feeling of consistency is occurring—getting at least 8 house of sleep, walking-running 3/4 miles a day, doing yoga and meditation daily, seeing a therapist…. And writing about it all. This kind of integrative medicine is where we should all head towards, as patients and caregivers!
Here is the coolest photo in the world…. Can you guess what it is a photo of???
From National Geographic!