The Digestive Disease and Surgery Institute receives more than 90,000 patient visits per year. Each of our patients has a unique story to tell, and we have recorded a few here. Please take the time to view our patient stories.
Finally Achieving A Normal Life: A Letter From LaDonna Ashbrooks
I am a survivor of ulcerative colitis (UC) and I would like to share my story. In November 1997, while I was pregnant with my daughter, I was diagnosed with UC. The symptoms were mild at that time and no one explained to me how debilitating the disease could become. I was naïve enough not to investigate it on my own. After giving birth to a healthy girl in January 1998, I discovered just what UC can do through six years of battling it. I was initially treated with all of the sulphur medications. They did me no good.
My doctors finally resorted to prednisone. The side effects of this drug were something to endure. My clothing size fluctuated from a two to a 10 at any given time. I had a lovely moon face that made me look as though I had swallowed a blow fish. I was in and out of the hospital with flare-ups. I was pumped with IV prednisone (80 mg daily). I also was given immunosuppressants and had blood work done twice-monthly and sometimes weekly. I was passed from doctor to doctor and got nowhere.
Every time the doctors attempted to wean me from the steroids, I would have another flare-up, usually resulting in hospitalization. I even tried Remicade twice, only to have a severe reaction to it. Methotrexate was mentioned as an alternative, but we decided against it.
I am a high school teacher. I would drag myself to work, survive until the last bell rang, then go home to bed, only to start over the next day. I was just existing, not really living. It breaks my heart to think how my illness affected my ability to be a good mother. I didn’t have the energy to do ANYTHING except the bare necessities of surviving.
In November 2002 (Thanksgiving break), I broke my finger while riding horses in my yard (near the restroom). The doctors had done a bone density test in March 2003, where we discovered the prednisone had caused such calcium depletion that I had severe osteoporosis. That’s when I was told that the “remedy” was causing yet-another ailment. My body could no longer tolerate steroid treatment, yet it was the only thing that had proven to be effective. My doctor told me it was time to consider surgery as a real alternative. Until this point, surgery had only seemed like a vague possibility. Now, it was reality. (In September of 2004, the osteoporosis resulted in a broken hip and fractured vertebrae in my back.)
My physician referred me to a gastroenterology group in Little Rock, AR, who reviewed my records via teleconference and told my physician that if I were their patient, they would send me straight to Cleveland Clinic because I seemed the perfect candidate for the J-pouch procedure. I had never heard of this procedure.
On Good Friday 2003, I drove to Cleveland Clinic and met with a variety of physicians to determine whether I was a good candidate. Upon discovering a thyroid issue, Cleveland Clinic sent me back to Arkansas to have the problem diagnosed and treated, thinking it might have an effect on my UC. However, the thyroid issue had nothing to do with the UC.
I wanted to schedule the surgery as soon as possible thinking I could do my three months with the ostomy during the summer and not have to teach with it. However, Cleveland Clinic scheduled my surgery for July 1 because “you don’t want to have surgery without Victor Fazio, MD, on your team and he’s not available until then.” So, I underwent the first stage of my surgery, was hospitalized for six days, then stayed in a Cleveland hotel for seven more days.
Before surgery, I was counseled on what to expect and assigned a case worker. Post-surgery, I was assigned an ostomy nurse. She was WONDERFUL. She showed my husband and me everything about the bag and how to care for the ostomy. She answered all of our questions and set up appointments so I could see her while I was still in the Cleveland area.
We went back to Arkansas, where I recovered and learn to live with an ostomy. I returned to work in the fall. I flew to Cleveland in October for my “take-down” surgery. I had no problems, and was back at work within two weeks.
I have had a few instances of pouchitis, but it was nothing compared to UC. I took oral antibiotics and kept right on working. I have not had pouchitis for several years. I eat what I want (within reason). I even have an occasional salad. I no longer feel tied to a restroom. I no longer have urgency or accidents. I am no longer anemic. Life is SO good.
I look at photographs from before my surgery and realize just how sick I was. I was just surviving and was living tied to a restroom. Taking medications and feeling bad were just part of my life. I am glad to say that is all in the past. I live a normal life. Yes, I use the restroom more frequently than others because my J-pouch is not as big as a colon, but I choose when I go. I have control. The only medications I take are vitamins and my thyroid tablet.
Life is good. God is good. Cleveland Clinic is good. If I can ever be of any assistance to any other patients, please contact me through Cleveland Clinic’s Department of Colorectal Surgery at firstname.lastname@example.org.
The Seasons Of My Life: A Letter From Amy Sloan Nichols, PhD
When I run along some of my favorite trails, I am mesmerized by nature's ever-changing display of colors. It is the perfect setting to reflect upon the many seasons of my life, my personal transformations, and appreciate living in the moment I have always been a healthy athlete, enjoying all kinds of sports and activities. Jon, a fellow athlete, and I were married in the summer of 1989. With mixed but inspired feelings, we bid farewell to our family and friends and relocated from Western New York to Southeastern Michigan, where greener pastures lay ahead - an automotive engineering career for Jon and a high school teaching position for me.
The following summer, we decided to drive out West for a second honeymoon. It was a magnificent trip - camping, hiking, biking, running, swimming, exploring - life couldn't get any better than this! We returned home and I suddenly became very ill with what I speculated to be possible ingestion of a parasite. I was not prepared for the diagnosis of ulcerative colitis.
As a 30-year-old health nut, this was the first time that I was TRULY sick. My symptoms included chronic urgency to use the restroom, blood loss and unremitting abdominal pain and cramping. These symptoms, coupled with a significant amount of weight loss, highly limited my activities — running was no longer an option. As summer turned to fall, I went from a sense of serenity to uneasiness and sadness. I was not responding to medication. My spirit was weakening and defenseless. Intuition told me that surgery was the next step… and so it was.
I had to have my large intestine, rectum and a small portion of the small intestine removed, requiring a temporary ileostomy until a second surgical procedure, a J-pouch, could be performed the following spring. At 5 foot 4 inches, I now weighed less than 100 pounds, and needed to reintroduce food to my digestive tract. As winter arrived, this lifelong athlete was unable to participate in any physical exercise except the occasional walk down the driveway to fetch the mail.
Unfortunately, I had several complications throughout the winter, spring and following summer that resulted in multiple hospital stays, IVs, liquid diets, continued weakness and further weight loss. My doctor told me that I needed to gain weight. I knew this intellectually, but a diet to add weight was both a paradox and foreign concept to me. As the fall arrived, my strength, endurance and weight gain slowly increased, and soon my spirits were awakened.
My husband, family and friends showered me with love, understanding and humor (buy some shoes to match your bag?). This entire experience changed my outlook and perspective of life. I was thankful to be alive, disease free, healthy, and no longer a frequent guest at the Clinic. What should I do with my life now that I had it back… or rather forward? Stay healthy, allow physical and mental fitness to continue to transform my life, go to grad school, travel and appreciate all that there is and all that I have.
I ran a 5K the following spring (1991), a year and a half after my surgery, and have since completed two marathons, several half marathons, plenty of charity road races, mini-triathlons, duathlons and charity bike rides. A group of us participated in a few 100K-team relay trail runs. I returned to college and completed my doctorate. This led to a rewarding career as a school administrator, with opportunities to teach as an adjunct professor at nearby universities.
I have also had the opportunity to comfort people experiencing similar struggles and surgeries. A myriad of feelings is associated with this kind of surgery that many are uncomfortable discussing. I am told that I inspire others and it is this appreciation that embraces all that I do.
… and life goes on, years pass, seasons change.
I want to preface by saying my quality of life is great, the human body is an extraordinary machine, and I am thankful for each day. I know that I am capable of giving and receiving love. I am surrounded and supported by my wonderful family, friends, and my remarkable husband, Jon. I truly understand unconditional love.
I have experienced several setbacks, starting in fall 2000, which continued through spring 2007. Actually, I had another major, life changing surgery in January 2007 at Cleveland Clinic. Let me backtrack a bit. For more than 10 years, I was a J-pouch poster child. Then, in the fall of 2000, I underwent surgery for an abdominal mass that was a combination of an ovarian cyst and scar tissue. The mass attached itself to my small intestine and the doctors were quite concerned. I had just entered a new school year with my staff and was at peak physical performance, having recently completed a 10-mile race. The surgery resulted in the removal of the mass, my right ovary and fallopian tube, but the mass, which was the size of an orange, was benign. All was fine within a few months and I re-engaged in all my activities.
Now I’ll fast forward. Jon was aggressively recruited by an engineering firm in Austin, Texas, during the winter of 2005. We had created a wonderful life in Michigan with 16 years of personal growth and professional success. Our decision was to accept the job offer in Austin, say goodbye to Michigan and see what life held for us next on our journey together. Sadly, we closed one door and bravely walked through this new door with open minds, ambition and excitement.
One of the most difficult decisions was leaving my surgeon of 15 years. I began struggling with complex fistulas in my J-pouch from 2003 through 2005, resulting in several medical procedures, interventions and in- and outpatient surgeries. The type of fistulas I had occurred from the intestine/J-pouch/rectal areas tunneling through my skin. The tunnels began to branch out and increase in number, thus the diagnosis of complex fistulas. Crohn’s was ruled out and we thought we had the fistulas healed that May, prior to my move.
By the summer of 2005, our move to Austin was complete and I was ready to begin a new job in the corporate world that fall. Jon and I planned a multi-sport summer vacation in Telluride, CO. This was our third trip there. We had a great time, were very active, and ended each day with a glass of wine and a hot tub soak. Two weeks after our return to Austin, I was sitting in my new surgeon’s office with a temperature and terrible pain. Yes, the fistulas were alive and well and upon our first meeting, my new doctor performed an office procedure to release the fluid and address the pain. He reconfirmed the fistula diagnosis and ongoing internal infection. I was not responding to medical interventions. Just six months after moving and starting a new career, I was prepping for yet another surgery in early 2006. This surgery was to create a temporary ileostomy AGAIN, 15 years after my initial one.
I adjusted well to the ileostomy bag and increased my strength and stamina. I stayed very active and fit, traveled for business, joined a golf league, started yoga, entered bike races with Jon, completed a mini-triathlon, sailed in the British Virgin Islands and participated in my first adventure race with a friend. Life was so very good and I was thankful for each day.
It was now the fall of 2006. Comprehensive medical tests indicated that fistulas and infection, significant weakness in muscles and incontinence. My Austin surgeon was really discouraged. He recommended a second opinion from either the Mayo Hospital or Cleveland Clinic. I realized that I really only had two alternatives remaining: a permanent ileostomy or a Koch-pouch (continent ileostomy).
Internationally renowned Cleveland Clinic surgeon Victor Fazio, M.D., is recognized for his technical expertise with K-pouches. We went to get his professional opinion and to determine if I was a possible candidate. I was and underwent the surgery in January 2007. This was a very difficult surgery, with large amounts of scar tissue that further complicated and extended the length of surgery. I write this article while recuperating at home. The recovery is slow, long and often painful, but I am getting stronger each day, increasing my stamina and endurance. I have far to go, yet I have come so far.
We love living in Austin. There is plenty of sunshine and the mild climate invites you to play outdoors. I am excited about wearing form-fitting clothes again and maybe a two-piece bathing suit this summer. Equally, I thrive on the endorphin rush I get when I eventually go back… no, go forward to my full and active life. My next goal is to participate in a sporting event and only wear my iPod by choice and not an ileostomy bag by necessity.
It is now August 2007, the lazy days of summer and I am officially 6 months past surgery and feeling incredibly healthy and strong. I logged 30 miles running last week, slow, steady and relaxed, listening to my music and enjoying every step.
I have learned many life lessons through my trials and tribulations. The global lesson is that this is life, your life, my life. It is fragile and you do not get a dress rehearsal. It is how you choose to reflect on all that happens that allows you to be your best self and live your best life. Maintain a positive outlook and healthy spirit, understand the mind-body connection and respect the human body as a fascinating machine.
I will continue to reflect, recognize and appreciate all that I have and all that I am. Jon and I celebrated 18 years of marriage this summer in Telluride, CO. I am delighted to say that at age 46, the changing, multicolored seasons of my life continue to flourish and follow trails of their own, leading to places that resonate my past, welcome and respect the present moment, and guide the path to my future.
Amy Sloan Nichols, Ph.D.
A digestive complication immediately spurs a Same Day Appointment and a family thanks Dr. Fazio of the Digestive Disease and Surgery Institute for saving the life of a loved one with Crohn's disease. View the stories below.
Terri Hofmeister never felt sick; she was 26, married to Michael, and healthy and pregnant with her second child.
While her family has a very strong history of colorectal cancer (her father, uncle, aunt, grandmother and great-grandmother all have it, and her uncle and great-grandmother died from it), she was symptom-free.
“I’ve truly been blessed,” she said. “I rarely get sick.”
When her father was diagnosed with colorectal cancer, the doctor suggested that Terri and her sister have a colonoscopy. Even though she had no symptoms, the doctors were worried that her family shared genetic changes making them more susceptible to colon cancer. Since she was pregnant, she couldn’t have a colonoscopy (a test that would allow the doctor to determine if Terri had polyps in her colon).
After giving birth to her son, Terri had a colonoscopy and her doctor discovered many polyps indicative of a familial cancer disorder and a precancerous polyp. She had the colonoscopy just in time.
“The hard thing was that I had to watch my father, who just went through his surgery and has colorectal cancer, live with an ileostomy bag for life,” Terri said. “It was so odd: I felt fine, didn’t feel sick at all,” she said. “And no, I didn’t want to have a colonoscopy, but why take that chance? Thank god I got tested.”
Terri was fortunate as she had the opportunity to have a procedure to treat her polyps and prevent her from getting colon cancer in the future, unlike her father. She had a single port laparoscopic total proctocolectomy with J pouch which is a procedure that removed her entire colon and rectum and made a pouch out of small bowel to replace the rectum.
All of this occurred through a one-inch incision - performed by Dr. Meagan Costedio at Cleveland Clinic - with a minimal scar.
“The surgery went very well,” Terri said. “While the recovery was rough – not being able to pick up my two children – but I feel great: I am living my life, enjoying my family and am thankful that I am still alive!”
As an employee of the Cole Eye Institute of Cleveland Clinic’s Hillcrest Hospital, she was very familiar with healthcare.
“The importance to early detection is being tested,” she said. “Getting the colonoscopy done and knowing what the results are, I learned firsthand about how it could have saved someone. My dad chose not to get tested at a younger age and unfortunately he has to have an ileostomy for life.”
Terri continues to struggle with the emotional pain for her family’s decisions: “I think the craziest part of all of this is that several of my relatives were told that they should get tested for colon cancer,” she said. “And they refused. They don’t seem to understand that this is the number one most preventable cancer. One test and they would know, and could do something to save their life. And they won’t do it.” She paused, and then she said, “I just don’t get it. This is life and death.”