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!
“What goes around comes around . . .” may actually be an old proverb meaning “the status eventually returns to its original value after completing some sort of cycle”. . . . Or, “a person’s actions, whether good or bad, will often have consequences for that person.”
I am thinking about that old saying a lot lately, due to the news that I have a severe recurrence of Crohn’s disease. Crohn’s can be found anywhere in the intestinal tract, from the mouth to the anus, but it usually presents in the terminal ileum, as it did in my case. Since I no longer have the 20 centimeters of terminal ileum (or the ileo secel valve that links it to the large colon), I now have the spread of the disease on the other side of my sutchers…. 20 more centimeters of small bowel are severely inflamed. For the record, that is a total of almost 2 feet, 20cm being around 8 inches. Here is a good definition:
The small intestine (or small bowel) is the part of the gastrointestinal tract following the stomach and followed by the large intestine, and is where much of the digestion and absorption of food takes place. The primary function of the small intestine is the absorption of nutrients and minerals found in food. The average length of the small intestine in an adult human male is 6.9 m (22 feet 6 inches), and in the adult female 7.1 m (23 feet 4 inches). It can vary greatly, from as short as 4.6 m (15 feet) to as long as 9.8 m (32 feet). It is approximately 2.5–3 cm in diameter. The small intestine is divided into three structural parts: Duodenum, Jejunum, and Ileum.
The small intestine is where most chemical digestion takes place. Protein, lipids (fats) and carbohydrates are broken down and a process called diffusion takes place where nutrients are absorbed into the blood vessels through the wall of the small intestine (the terminal ileum is where the B-12 and bile salts are specifically absorbed). There are all sorts of mucosa and wrinkly tissue down there—hence the language from my latest colonoscopy had terms like “serpentine” to describe the tracks of inflammation they found). There is a lot going on in the bowel—the second brain—including the delicate villi, which is Latin for shaggy hair (I love these descriptions!).
Do you have Crohn’s or uc?
If so, we have even more in common! Interestingly, I keep my book off my Facebook personal page—not to hide my disease, but to not “promote” my book, for fear people will think I am only selling a medical memoir written with a naturopathic doctor to make money (not!!).
Maybe I should become brave like Mike McCready, and be even more open….in this teeny tiny post, I will explain that I have lived with this sucky disease since I was in college, and was only diagnosed when I was forty.
When I turned 50, I lost a significant portion of both large and small bowel, and I have enjoyed a great quality of life ever since my surgery—pain-free! What a joy to have my life back!!! I take nothing for granted, and I wake up each and every day feeling blessed and lucky (I’m Irish), and I do not like to listen to self-absorbed people talk on and on about, you know….. Anyway, as I was sayin’ …. My book is ranked number 11 on Amazon in disease, and consistently No. 1, 2, or 3, in Kindle’s Gastroenterology ranking. Many people actually write to me and say thanks—the greatest gift in the world! I want to say “thank you” to my readers, my friends, and all of the community—anyone who has struggled with disease, or losing a loved one—we are all connected!
What does Karma mean?
A Sanskrit word, and one from Hindu-Buddhist religious traditions, it means that “the total effect of a person’s actions and conduct during the successive phases of his existence, regarded as determining his next incarnation.” I don’t know about you, Dear Reader, but I am ready for this cycle of disease to be over!
From the Dalai Lama
Take into account that great love and great achievements involve great risk.
When you lose, don’t lose the lesson.
Follow the three R’s:
– Respect for self,
– Respect for others and
– Responsibility for all your actions.
Remember that not getting what you want is sometimes a wonderful stroke of luck.
Learn the rules so you know how to break them properly.
Don’t let a little dispute injure a great relationship.
When you realize you’ve made a mistake, take immediate steps to correct it.
Spend some time alone every day.
Open your arms to change, but don’t let go of your values.
Remember that silence is sometimes the best answer.
Live a good, honorable life. Then when you get older and
think back, you’ll be able to enjoy it a second time.
A loving atmosphere in your home is the foundation for your life.
In disagreements with loved ones, deal only with the current situation. Don’t bring up the past.
Share your knowledge. It is a way to achieve immortality.
Be gentle with the earth.
Once a year, go someplace you’ve never been before.
Remember that the best relationship is one in which your love for each other exceeds your need for each other.
Judge your success by what you had to give up in order to get it.
If you want others to be happy, practice compassion.
If you want to be happy, practice compassion.