I went to my primary care physician, but he thought the symptoms might be temporary and said I shouldnt be concerned. Six months later I saw another doctor who sent me to a gastroenterologist. After I had a colonoscopy, I was diagnosed with left-sided ulcerative colitis, which is a milder form of ulcerative colitis; its not as severe and means that only part of the colon is damaged.
I felt relieved—I had a diagnosis with a name, and I assumed Id be fine with some medication. Relief quickly turned into concern when I found out that ulcerative colitis is incurable, and whats more, its associated with a higher risk of colorectal cancer.
I did feel better pretty quickly because I started taking corticosteroids, which are powerful immune-system-suppressing drugs. But they can have side effects, so they are usually taken only for short periods of time. Through the years I tried several different medications, but a corticosteroid called prednisone and Asacol (a type of drug known as a 5-ASA) were the most effective; I would go into remission and stop, then start again when I had a flare-up.
Ulcerative colitis and pregnancy
During 2005, I got pregnant while in remission, but then I had a flare-up again. I was afraid about taking medication while pregnant—at that point I didnt even want to drink coffee because of the caffeine. I was taking Asacol, which didnt have any major warnings for pregnant women. During the end of the pregnancy I felt better.
I had my son and after I stopped breast-feeding, I was very sick again. After moving to Florida, I found a great gastroenterologist who put me on a drug called Remicade (infliximab). I went into remission once again.
At that time, I was diagnosed with osteoporosis in my hips, possibly due to taking corticosteroids. I knew that corticosteroids could cause weight gain and “moon face,” a swelling of the face. But I hadnt researched all the side effects and I didnt know that they could affect bone density and increase your risk of osteoporosis.
Knowing what I know now, I would have worked closely with my primary care physician to coordinate care of my bone density while taking the steroids. I could have boosted my calcium intake and done weight-bearing activities that may have helped. My recommendation is to research every ulcerative colitis medication you take. Make sure you find a gastroenterologist with experience treating ulcerative colitis—someone who is also up on the latest and best treatments.
I started researching all the medications I had taken, and I really hoped that Remicade had cured me. We moved to Tennessee and I stopped taking Remicade. Unfortunately, I started seeing blood again and lost weight. I became very sick very fast.
I found a gastroenterologist at Vanderbilt University who specialized in inflammatory bowel disease, and I had a colonoscopy. He advised me that the disease had spread throughout my colon, and recommended that I meet with a colorectal surgeon to review my options. The surgeon advised having something called J-pouch surgery.
My surgeries took place over six months
In my case, there were three separate surgeries performed over the course of six months. First they removed the colon, or large intestine, and created something called an ileostomy. Four months later they took a portion of my small intestine and created a J-shaped pouch. While the pouch is healing, you need to have a temporary ostomy bag to collect waste. In the third step, the small intestine is connected to the new pouch so that waste can exit your body naturally—no need for an ostomy bag to collect waste outside the body.
Many people with ulcerative colitis are afraid to have their colon removed. Most people think you cant live without one, but you can. The surgery is tough, though; it changes your body for a while and leaves scars.
There can be many complications with this surgery. I ended up with a blood clot and abscesses (infections), but I would definitely do it again. Because I no longer have a colon, I dont have ulcerative colitis and I dont have to take medication.
The best way to approach surgery is to be informed. I wish I had known more about surgery before the disease had progressed, and I may even have had it sooner. I had lost 15 pounds and was malnourished; I think I might have healed better if I hadnt been so sick.
When I moved to Tennessee, I was a relatively healthy woman without any problems. But from July to October my entire life changed. I wasted a lot of time because I had decided that I was cured of ulcerative colitis; I had decided in my mind that I was well.
I would recommend not feeling guilty about having ulcerative colitis and not letting other people dismiss it or say it isnt a very serious illness. There is nothing to be ashamed of—patients have done nothing to bring this on themselves and we should all feel free to talk about it. In order to facilitate a cure, we have to get the word out on this debilitating disease. Just because youve been diagnosed with ulcerative colitis doesnt mean you have to stop living.