Introduction
There are two submissions in this newsletter "One Patient's Story." One is from the fiancé of a patient with ulcerative colitis and one
is from the mother of a patient with Crohn's disease. These articles very effectively share the emotions, fear and uncertainty that family and friends
face when someone they love is affected by a chronic disease, and both echo a similar sentiment that not knowing what was ailing their loved one was much more stressful than (finally) finding out the
diagnosis and moving forward with successful therapies. So often we don't acknowledge that the other people sitting next to our patients in the waiting room or in the exam room are profoundly affected by
all that is happening. These articles provide an opportunity to reflect on this and to thank them for all that they do.
David T. Rubin, M.D.
These articles originally appeared in the University of Chicago Medical Center Patient Newsletter "The Inside Tract".
Living with Ulcerative Colitis: The Girlfriend's View
by: Jeanine Cassidy
All of this started early in our relationship, at a time when he was not too comfortable telling me his symptoms of bleeding, extreme abdominal pain, and
rushing to the bathroom so often. In a short time, however, both our relationship and his ill health got stronger and finally he opened up to me and to his family. This was the first step to his recovery
or should I say "manageability" of this disease.
Now, granted, we still did not know what the problem was, nor did the doctors we saw know, for that matter. First he was being treated for hemorrhoids, and that did not seem to solve any of the problems.
Then the tests began, and again no real answers. It was extremely frustrating to watch someone I love and care about feeling so bad and not being able to help him.
After a year of still not knowing what was happening, we made the decision to switch to the University of Chicago Hospitals for answers. That was the best decision that was made. We were referred
to an excellent surgeon at the university by the name of Dr. Charles Perrott and he started different treatments, and some worked and some did not. As this treatment continued, I noticed that his appetite
outside the house decreased severely. He was hesitant to leave the house altogether for fear that he would not be near a restroom fast enough. We had made plans to visit my family in Philadelphia but the
travel was very hard on him. We did not have any social life for fear of not having control of restroom access when we needed it. Our daily routines such as grocery shopping even changed. We would
go together, but often I would have to be left there alone while he ran back home with the car, just hoping he would make it in time. Our sex life had come to a screeching halt, and our friends thought
that we didn't have an interest in seeing them anymore when we kept turning down their dinner or party invitations. Our weekend tennis game had to stop because of the lack of energy and being out in such
an open public park. We used to love going for bike rides and that was not even a thought now.
At this point we discussed his condition, and Dr. Perrott referred us to Dr. Rubin. He performed a colonoscopy and diagnosed him and told us just how sick he really was at that point. Well the relief that
we felt to finally know what was wrong was so overwhelming we actually smiled at each other in a strange way. At that point we both knew without saying one word to each other, that now our life could
finally move forward. Maybe it was going to be a hard move, but one that we could begin to understand. After two blood transfusions to replace all that was lost during the unknown years, we immediately
saw a difference in our lives. The energy that he lacked was back, and the energy I lost by worrying was back. Don't get me wrong, there is not a day that goes by that I do not worry, but it is more
easily discussed between the two of us.
A year has gone by since the diagnosis, and some treatments have worked and some have not. The progress has been more positive than negative and now we both are getting control back in our lives. I will
say, though, I have never talked about bowel movements so much! Almost every day there is a question or discussion whether it was a good day or bad day for him, but I'll take that conversation any day
now compared to what we went through before his diagnosis. We know that we still have a long road ahead of us, but our life has slowly gotten back to where we can enjoy it. I have come to learn that not
only the patient suffers from the disease, but so do all who love and care for him. With access to the right team of doctors and working together we can look forward to a healthy and happy life. We're now
planning our wedding!
EDITOR'S NOTE: Ms. Cassidy's fiancé has ulcerative colitis, one of the major types of inflammatory bowel disease. Ulcerative colitis is a chronic condition often
diagnosed in young men and women, and characterized by periods of active symptoms of rectal urgency, diarrhea, and blood loss and other periods of remission, in which patients feel healthy and do not have
these symptoms. Successful treatment of ulcerative colitis involves working with experienced and informed physicians to obtain safe and effective therapies, but a key ingredient to success is the essential
support of family and friends. Living with someone who has a chronic disease can be as stressful as having the disease, and often our patients' support network needs as much education and attention as do
our patients. We are grateful to Ms. Cassidy for sharing her story. – DTR
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My Daughter: The Artist, a Crohn's Patient: the Mother's View
My daughter, Wendy, has been an artist since the age of 2 years old – a Crohn's patient since she was 12. For several months, I took her back and forth to her pediatric doctor. Every time I told
him of a complaint she had, he would explain it away or maybe have a test done to calm me of my distress. First, joint pain in her left knee, "growing pains" he said, then, tested her for rheumatoid
arthritis, negative results. Frequent bowel movements, usually before she finished eating a meal, "good constitution" he said. No weight gain or growth, "slow growth period" he exclaimed. She was only
60 lbs. at 12 years old, people used to ask me if I fed her! Little to my knowledge, she was starving, because of an illness that did not absorb nutrients.
One night, Wendy crawled into bed with me in so much pain on her right side that she was shaking uncontrollably! I took her to the emergency room, thinking it might be appendicitis. The surgeon on staff
told me that she was very anemic, and that anemia did not go along with the symptoms of appendicitis. He wanted to take more tests– two to three days worth of agony, wondering what was the matter
with my daughter. After a series of CAT scans, upper and lower G.I. tests and X–rays, she was diagnosed with Crohn's disease. My first reaction was "What is Crohn's disease?" I had never heard about
it. After the doctor explained the "dynamics" of this illness, I remembered all of the ailments for which I had taken her to see her pediatrician! I had always measured Wendy on the doorway and marked
dates. From this "chart" the G.I. specialist presumed that she started with Crohn's about 10 months before it was diagnosed.
Then, came the ups and downs of this illness. Denial; informative seminars; my daughter hiding her meds in closets, under the bed, in drawers; support groups; face and body bloat from steroids; and most
important, sincere G.I. specialists who tried to get her into remission. During an 8 year period of going from one G.I. specialist to another, always hoping for improvement, I finally broke my acceptance of
what shall be. The doctor prescribed 150 doses of Vicodin for pain to get her through the Christmas season! I told him that I wanted to take her to see a doctor at the University of Chicago Hospitals. He told
me he could send a referral, but it would take 3 weeks to get her in. That is when I took her to the emergency room at University of Chicago Hospital and waited for 13 hours for her to be seen. A lot better
than 3 weeks! During our wait, as always, Wendy drew pictures. I could scribble something on a piece of paper and she could always make a picture out of it. She was first seen by Dr. Hanauer and many of his
staff. I was very impressed with the thoroughness of the exams that were done. In the subsequent months and years of treatment, there were so many times we were in the emergency room that one nurse knew us
immediately when we came in. She instructed whomever that was to take blood or start an I.V., to use the smallest needle as Wendy's veins were small, usually from dehydration.
More recently, my daughter became the patient of Dr. Rubin. He understands and cares about who she is, what she likes to do, and how to help her as a patient by treating her whole being. Wendy has had two
bowel resections. The second resection was at University of Chicago Hosptial, with the good possibility that she would have to have an ileostomy for a few months. My heart leaped as she was wheeled back
into her hospital room and said, "Look ma – no bag!" Her smile was as radiant as the sun! Dr. Rubin was determined to get her off of steroids and some of the other meds that she was on. She receives
infliximab infusions every 6 weeks and her Crohn's is in remission now! Although she has a couple other health problems her remission has been a blessing. Instead of being 5'4" and 85 lbs., she is
now 115–120 lbs. and looks fabulous. Throughout all of these years, my daughter, the artist, has painted, sketched and created beautiful jewelry. Some of the artwork shows the pain and helplessness
of her illness. They are all works of art.
She is my inspiration, a soldier, who has been through hell and made stronger for it. Through those same years, I have read a lot about Crohn's; tried to make sense out of medical reports in the medical
library; seminars; support groups; even TV shows on Crohn's disease. I ask questions, I have a list every time we go to see Dr. Rubin. Usually most of them are answered before they are even asked! As a
mother, it has been hard to see my child sick and there was nothing that I could do to help! I could not fix her! But, I could learn as much as I could about her illness, I could ask about the last
treatments, and I could be there to observe her and help her to cope. I have found that the support, caring and advocacy that I have given to her has helped her through her rough times as a patient, as
well as her creative times as an artist. To our medical staff: I send my sincere and heartfelt thanks for making my daughter's life, as well as my life, so much more livable!
EDITOR'S NOTE: We are so grateful to Susan for sharing her compelling story as a mother of a patient with Crohn's disease. It is estimated that there are currently 1.4 million Americans with Crohn's disease
or ulcerative colitis (the inflammatory bowel diseases), and at least 33% of them were diagnosed under age 18, as in Susan's daughter's case. Crohn's disease is a chronic inflammatory bowel condition of
unknown cause that is characterized by periods of active inflammation alternating with periods of remission. One of the most common presentations of Crohn's disease in a child is a failure to grow or
mature. The good news, however, is that effective treatment of the disease usually results in prompt growth and catch–up, as is described here. Although we try to avoid surgery in all of our
patients, it is often the most effective way to induce remission of the disease. Patients rarely require permanent diversion of their bowel contents to the skin (ostomies) anymore, but when they do, this
usually results in a stable and long–term remission.
One of the major advances in the management of our inflammatory bowel disease patients has been the development of biologic therapies. These are agents that use technology to alter the immune system and
control the disease. As Wendy's mother shared, she is receiving infliximab (Remicade™), an antibody against an inflammatory protein. Infliximab is FDA approved for the treatment of Crohn's
disease and more recently, ulcerative colitis too (as well as other inflammatory diseases). The management of patients with chronic disease should include an understanding of what is important to the
individual, so treatment decisions can be made with the quality of life and needs of the patient as a person in mind. Many patients with chronic illness find ways to express themselves, as Wendy has done
so effectively through her art. – DTR
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