I found this photo this morning, when I was remembering how scared I was going in for surgery for a bowel resection due to a serious, three-week, blockage of my small intestine from complications of Crohn’s disease.
I only weighed 117 pounds in this photo, taken with my son’s college roommate, Justin, two days before my operation in 2006. I was so skinny and malnourished, it’s hard to believe now that I am over twenty pounds heavier! I also found my husband’s post on my CaringBridge site (which still exists under “DedeCummings”), and I want to tell all my readers and followers of this blog, that you should never give up hope!
Written May 22, 2006 8:35pm
The news from Hanover is very good: Dede was in surgery from about 9:30-noon, and awoke (in a manner of speaking) about an hour later. She had a good grip on the button of her morphine pump, and smiled beatifically every time she heard its answering “beep.”
Dr. Henriques took out approx. 5 inches of her small intestine, of which 5 cm had severe scarring and the rest was worn out, and about the same length of large intestine, which had been scarred by a fistula (an “abnormal passage” connecting the two, resulting from her disease/scarring). The doctor held up his index fingers like a fisherman describing his catch when describing all of this.
He also took out her appendix while he was in there, so we’ll have no access to supplementary information about her internal organs in the future. (Sorry: lame book joke…) Her gall bladder looks fine, just for the record.
He expects her to be in the hospital for only a few days, so she could get home as soon as Thursday. She has already gotten out of bed, taken a few steps, and sat up for a while.
By tomorrow she’ll be treated to smoothies and milkshakes, and can eat some solid food by the end of the week–Dr. Henriques predicts that she’ll be voracious by that point.
Thanks for all of your lovely notes and positive thoughts; I’ll be able to get my computer online in her room tomorrow, so keep ’em coming.
Greetings fellow Crohnnies and UC-ers, and summer travelers,
I love to travel, and left home when I was eighteen even to live in Europe by myself for a year. I settled in Vienna, Austria, and loved the culture and the people. The diet, however, was not the healthiest, and I gained twenty-five pounds by subsisting on Würst, and bread, and of course beer. I remember, when I came back from Europe, my father looked at me and said, “you’ve gained twice the Freshman 15, and you didn’t even go to college!” ha, ha ha.
Well, here I am, many years later—with college, marriage, and three wonderful children behind me, and I have to say that the one good thing that having Crohn’s disease has done is I don’t give a shit about my weight, and I just eat what I can and make no apologies to anyone! (Sorry to use a swear word, and be so blunt!). My weight has stayed at around 140, which my gastroenterologist says is “perfect,” because I eat healthy food all the time—hardly any sugar, no fried food, no fatty food, no wheat, very low-fat dairy, exercise daily, and maintain a low-stress lifestyle.
The reason I am writing this post today, is not to talk about our American culture’s OBSESSION with food and being thin as a sign of success; no, it is to talk abut the opposite—love your body and cherish your family and take responsibility for your own health and education.
I say this because for years, seriously, I wallowed in self-pitying behavior during my Crohn’s flares, which pretty much happened monthly, and had the nasty habit of joining with me having my period (good timing, eh?). I used to crawl into bed, and sometimes cry quietly, so as not to disturb my kids. After driving them to school (during one of these flares), I would frequently pull over to the side of the road in my car, and just put my head on the steering wheel and sob. It took me years to ask for help, and by the time I was finally diagnosed, my disease had basically devoured my terminal ileum, for it was beyond repair due to repeated flares leading to scarring.
So, having first had symptoms of ulcerative colitis (I have this, too!) after I returned from Vienna (remember my unhealthy lifestyle, horrible diet, and self-loathing attitude?), fast forward to 2006, to when I was admitted to the ER with a stomach the size of a basketball, and a severely impacted bowel that was about to rupture…I finally admitted that I was one sick person and I needed help.
That was my first step toward getting well.
Inside my head, I was constantly thinking about what I could or could not eat to stay thin, and be attractive—I smoked cigarettes to curb my appetite and utilized the diuretic aid that nicotine provides; I also worked all the time and exercised in fits and starts, and tried to diet, off and on, but always gained the weight back.
Having my kids and childbirth helped me let go of inhibitions (having my third baby stark naked in the OR and not caring one bit about my big belly or flabby legs 😉 was a great release for me—I always wanted to be trim and fit and “in control.”
One thing having Crohn’s has taught me is that sometimes when you lie on the cold and smelly bathroom floor with your arms wrapped around the toilet crying for your (not very nurturing) mother, you are clearly not in control!
Here is a link to a recent article about yoga and body image, and I was interviewed by the wonderful writer, Linda Sparrowe!
A disordered body image isn’t always about weight, of course. Dede C., a graphic designer from Vermont, remembers the time she was in a yoga class practicing handstand and her shirt came up, revealing a huge scar on her belly that she hated and felt ashamed of—a result of multiple surgeries. Her yoga teacher told her she was beautiful. “But my scar,” she said. “Your scar is beautiful, too,” he said. “It’s a part of who you are.”
So for my fellow Crohn’s disease and ulcerative colitis readers, and people who love you who may also be reading: let go, and by that I mean ask for help, but also study everything you can about your disease and admit you have a serious disease that can even lead to death. Don’t be polite at potluck dinner parties; at restaurants, ask for rice, well-steamed fresh local veggies (especially available in summer), and baked fish especially made for you if the menu doesn’t have easy-to-digest food (I just did this in Rhode Island on vacation last week, and I also politely sent back a dinner because something didn’t taste right and I trusted my gut—the fish was a bad piece, it turned out! And no way am I going to get food poisoning again…).
As I write this blog, I pledge not to offer “tips for this or that, digestive disease.” Instead, I offer up my interpretation of current medical research (remember, I follow gastroenterology papers, studies, and the like, with the zeal of a pre-medical student!), and personal stories that will, hopefully, help people cope and learn about their disease, and thrive!
I’ll post a few vacation photos (that’s me with my daughter and I wore a “tankiny” bathing suit that occasionally showed my scar and I did not even think about it!). I would love to hear how people are doing—travel with IBD is a challenge, so if you can’t take off this year, have a “home vacation,” with a week off from work and time away from computers! Get a hammock, read a great novel (Shadow of the Wind is my current favorite and it is set in post WWII Barcelona!), and watch movies….. Release stress daily, which is key to long-term health.
Often, I write about the benefits of yoga in my ongoing daily practice as a way to alleviate stress, promote healing, and feel in harmony with the world around me. The words of my teacher, Pema Chödrön echo in my mind as I slowly let go and attempt to empty my mind and achieve a state of truly being present, she says:
…”feeling your heart, and greeting the next moment with an open mind can be done at any time: when you wake up in the morning, before a difficult conversation, whenever fear or discomfort arises.”
I am a Crohn’s disease patient.
In 2006, I had a partial bowel resection and I have been in remission for the past 5 years. I was very sick and weighed only 119 lbs on my 5 foot 8 frame (now I am up to 139-142 lbs.). One of my goals, in writing the book with naturopath Jessica Black, was to try to help people BEFORE they get full blown Inflammatory Bowel Disease, by educating them about diet and lifestyle changes that are vital to maintaining health, especially in today’s world where we are exposed to chemicals and stress. An anti-inflammation diet is key; drinking lots of water, sleep, exercise, yoga and meditation, are all ways to cope with Irritable Bowel Syndrome, ulcerative colitis, Crohn’s disease and other auto-immune diseases—AND having a positive attitude.
After my terminal ileum, ileo-secal valve, and a big part of my Sigmoid colon (that’s part of the large intestine that had been damaged by a fistula that had spread across my abdomen and formed a tumor, that was thankfully benign) were removed, it took me weeks to get back on my feet, and I took baby steps —like walking to the mailbox each day was a big deal!
Yoga and meditation have helped me find a much-needed balance in my life. I work for a publisher called Shambhala, in Boston, and I asked my (then) boss, Steve Dyer, what I should read now that I was home from the hospital and wanting to follow a Buddhist path. He suggested books by Pema Chödrön, and the first three books I read had titles that attracted me: When Things Fall Apart, Start Where You Are, and The Places that Scare You—I loved her voice, her compassionate way with writing in a style that made me feel like she was writing just to me. Her newest is called Living Beautifully with Uncertainty and Change. I highly recommend her, and also Saki Santorelli’s book, Heal Thyself.
But what about exercise?
The Olympics are inspiring, no doubt about that. It would take the harshest cynic not to like some of the back stories, too. When I was a kid growing up in Providence, I always watched with my father. We both loved the “Up Close and Personal” shorts about the athletes—they came alive in your living room, as if they were sharing their stories just for you.
After I had recovered from surgery, I kept looking for activities that would help me stay in remission, and exercise topped my list: hiking, walking, running, snow shoeing, cross-country skiing, swimming, kayaking….all became priorities, especially hiking. I began to get physically stronger and fit, gaining muscle and stamina (I had been a smoker with a twenty-year habit!). In fact, I got in better shape as I worked out all the time, and increased bone density (especially important due to my heavy usage of Prednisone over the course of the three years leading up to my surgery…not a good drug to take for that long!)
Running my first half marathon for the Crohn’s & Colitis Foundation of America was one of the most awesome things I have ever done. First of all, I can’t believe I ran THIRTEEN MILES !!! Woohoo. I signed up to fundraise, too, and raised something like 2,500!!! I was very proud of myself, but I realized I was mostly proud of my fellow runners, my mentor (Bethanne Ford Packard), and my coaches—an inspiring group! I felt secure and happy surrounded by fellow Crohnnies and uc-ers! We laughed a lot, and encouraged each other during the race (some were walkers, too). I remember at mile 11, one of my coaches, Kate Devlin, urged me on, and I thought I would totally give up at that point, but I wanted to RUN. The whole thing!
I did it (in something like 2-1/2 hours, but who cares—I finished and I did run the entire way). I met tons of people (there were over 5,000 runners!) who had serious cases of Crohn’s and UC. I will never forget how close we became and how they inspired me. I am thinking of doing it again….
I can’t wait to watch U.S. paddler Carrie Johnson, who will compete in the sprint events in the second half of the Games. Carrie is a personal hero of mine — she has Crohn’s disease, like I do — and it has not made her quit; in fact I think it has given her more resolve and focus.
I will post some photos… Me, with my Team Challenge pals (that’s us jumping up for the camera at the start of the race outisde Boston, in Canton, Mass.)…. And a video of Carrie Johnson that is so beautiful! and one more photo of me on one of my training runs (with one of my dogs, Topher) in the ‘hood.
Good luck to all the aspiring athletes out there! It really does help to exercise daily, for 45 minutes!