Ulcerative Colitis Blog

Angie recently wrote into the blog and shared her own experience with UC through multiple medications and surgery:

1986 - diagnosed UC as a "tween", began sulfasalazine & prednisone. 2 hospital episodes 1986 and 1988.
early 1990s: off sulfa, changed to Asacol. Still on preds but lower dosage (10 mg/every other day??)
1996: flareup of joints, increased preds for two months, gradual taper to 5 mg every other day
late 1990s: finally off steroids after 10+ years.
2004: no more Asacol, due to IAPT successful surgery

Angie's story highlights the chronic nature of UC and the difficulty many patients experience tapering off of steroids completely. Angie relates she was on steroids for more than 10 years to control her colitis and joint symptoms and is now doing well off medications after a successful colectomy with ileoanal pull through (same as ileoanal pouch surgery). As discussed in prior blogs, the decision to have elective surgery for UC weighs the risks and benefits of chronic medications and potential side effects with removal of the diseased colon and future reduction of colon cancer risks. For elective situations, it is ultimately a question of quality of life, control of disease activity, and maintenance of future health.

With regard to quality of life issues, it is important for patients considering ileoanal pouch surgery to understand possible outcomes post-operatively. In general, individuals with ileoanal pouches pass on average 5-7 bowel movements per day. The bowel movements are typically liquid in nature because the colon which normally reabsorbs fluid is gone. As such, maintaining good hydration during sports and outdoor activities is important. Studies suggest 10-30% of people may experience a small amount of stool seepage at night while sleeping. Fewer are affected by episodes of daytime incontinence. About 30-60% of patients will have a single episode of "pouchitis" or inflammation of the pouch requiring a course of antibiotics for treatment. A small proportion, approximately, 8-10% may experience chronic symptoms of pouchitis requiring long-term courses of antibiotics and probiotics. As discussed in prior blogs, young women should be advised of the reduction of fecundity with childbearing associated with pouch surgeries. While fertility issues have not been associated with pouch surgeries for young men, reports of impotence or retrograde ejaculation are along the lines of 1%. The vast majority of individuals, however, report improved sexual functioning after pouch surgery to overall improved wellbeing.

Barbara wrote into the blog this week regarding her diagnosis of ulcerative proctitis/colitis and queried what causes colorectal inflammation in UC:

"I had a routine colonoscopy in Sept of 2006 and all of just fine....I never had problems in that area.....in May of 2007 I was struck with a terrible intestinal virus which caused me to vomit and have diarrhea at the same time for 5 days....it was the worst illness I have ever had....when it was over I started to bleed from the rectum with my bowel movements and shortly afterwards I was given a sigmoidoscopy and it was determined through biopsies that I had UC of the rectum or Proctitis....I am still in shock with this diagnosis since I never had a problem in this area.....what could have caused this to happen to me?"

Barbara's story of feeling completely fine and even having a normal colonoscopy prior to the onset of UC is not uncommon. The onset of UC is most often abrupt and seems to occur out of the blue. Barbara's question about why this happened to her is one of the most frequently asked questions by patients. While an exact cause for UC is not known, current theory suggests that it is likely due to a combination of genetics and environmental triggers. When a genetically predisposed individual comes in contact with a causal environmental agent, he/she may develop an inflammatory state that results in colitis. There is a lot of ongoing research regarding the genetics of IBD and what the potential environmental triggers could be.

At the present time, the search for genes suspected to cause IBD has been more fruitful for Crohn's disease than UC. Advances in new genetic and molecular techniques, however, may help in the identification of genetic markers in UC.

Much research has focused on environmental agents that may be associated with the onset or exacerbation of IBD. Some postulated risk factors for IBD include:

1) Cigarette smoking - protective factor for UC; flares often occur after smoking cessation
2) Prior appendectomy - protective factor for UC, risk factor for Crohn's
3) Antibiotics - may alter bowel flora
4) Oral contraceptives - weak association if any
5) High fat or sugar diet - no conclusive evidence for dietary causes
6) Lack of breastfeeding as an infant
7) Infections (both GI and otherwise)
8) Vaccinations - no conclusive evidence vaccinations cause IBD
9) Alterations in bowel bacteria

Barbara relates that she had a significant gastrointestinal infection which preceded the onset of her UC. Many patients describe such an event which seems to incite an inflammatory cascade that results in UC. As discussed in a previous blog, patients with UC have a predilection for GI infections cause by a bug called C. diff. Thus, in Barbara's case it may be that she possesses a genetic predisposition to IBD and her gastrointestinal infection was the inciting event for her UC.

For more information on the genetics and causes of IBD, please see our blogs from July 17 and 19, 2007 in the archives.

YS wrote into the blog asking about the surgical options for UC:

"My wife is suffering from ulcerative colitis since 1990 and has been taking sulfasalazine and steroid treatment with local enema but now she is not responding to the treatment and relapses are very early and frequent with daily motions exceed 30 to 35 per day with bleeding per rectum and abdominal pain. What are the prospects of surgery like left hemicolectomy with colorectal anastomosis?"

Indications for surgery in UC include:

1) Failure of maximal medical therapy to control disease
2) Colon malignancy
3) Fulminant colitis with complications (ie; diseased colon wall that breaks open)
4) Massive gastrointestinal bleeding

With regard to surgical procedures, the preferred surgery at the current time is total abdominal proctocolectomy (removal entire colon and rectum) with either an ileostomy (external ostomy bag) or ileoanal pouch (internal pouch made from small bowel). The decision to have a permanent ostomy versus a pouch depends on patient age, weight, and technical factors. Y.S. queried about the possibility of only removing only the diseased portion or part of the colon. This entails surgeries called subtotal colectomies or an ileorectal anastomosis (connection of the small bowel to the rectum). Surgical experience has shown that removal of only part of the colon is unsuccessful because the rectum is almost uniformly involved in UC. Diseased rectum is not distensable and difficult to connect surgically to additional segments of colon and bowel. Also, the natural history of UC has shown that disease inevitably returns post-operatively to the unresected portion of the colon. Lastly, leaving in even a small portion of the colon does not reduce the future of risk of colon cancer in UC. As such, total proctocolectomy remains the favored surgical option at this time.

For more information about surgical options for UC, these websites may be of interest:

CCFA website - http://www.ccfa.org/info/surgery/surgeryuc
Up To Date - http://patients.uptodate.com/topic.asp?file=digestiv/10295

Accepting and managing a diagnosis of chronic illness can be an overwhelming prospect. As the peak incidence of IBD occurs between the ages of 20 and 40, many individuals who have otherwise enjoyed a life of good health are blindsided by the seemingly abrupt diagnosis. Given that people manage stress in different ways, there is no single coping mechanism that is applicable to everyone. In general, however, most practitioners would agree that a proactive, hopeful outlook aids patients as they navigate through a new diagnosis. Below is a recent article from the New York Times regarding coping with the diagnosis of UC that I found honest and insightful and wanted to share with others:

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Cases - New York Times

"When the Body Decides to Stop Following the Rules"
By LOREN BERLIN
Published: February 26, 2008

"Every day over breakfast, I fill three pillboxes. Fifteen pills in the morning, 3 at lunch and 8 before bed, for a total of 26. To my surprise, I find pleasure in the sorting, as it is one of the few moments when I can pretend I have some control over the bizarre war raging in my colon. When I learned 11 months ago at age 29 that I had a chronic illness, I understood that my life was going to change. I knew I would stop eating certain foods, limit stress and think more strategically about when to have children. What I didn't anticipate was the loss of control over my life that I thought I had, until the gastroenterologist uttered the words "ulcerative colitis."

He explained that for reasons unknown, my immune system was ravaging the walls of my large intestine, mistakenly trying to fight off a nonexistent foreign invader. Short of removing the colon, he said, there was no cure - leaving me to contend with unpredictable bouts of abdominal pain, bloody diarrhea, fatigue, weight loss, dehydration and night sweats. Forever.

Before my illness, I didn't realize I had been operating on the assumption that there was an equation to explain how things played out. It was almost like physics. If I followed certain rules, I would get the desired outcomes. I wanted to lose 10 pounds. So I quit eating after 8 p.m. and watched my waist shrink.

I wanted to find a good man. So I treated strangers with respect and am now engaged to my best friend. It didn't always work. But generally, if I made the investment, I got the return.

But incurable illness doesn't operate that way. Dealing with it is not about studying harder or developing a regimented routine. Nor is it about karma, becoming a better person or learning to like leafy greens. Rather, it is about hope, about believing that things will work out even if I don't know how.

It's hard. Not only am I adjusting to a chronic illness, but I'm also accepting that I am vulnerable to countless things beyond my control-that great haze that is the unknown.

With ulcerative colitis, the unknown is exploding around me like cannon balls. I could end up in the hospital with liver failure induced by my medicine. I could experience a vicious flare-up that results in the complete removal of my colon. These are only two of many possibilities, all of them frightening.

When I get scared, I focus on a definition of fate provided to me by a professor in college. Describing an ancient Greek perspective, he explained that fate could be imagined as a plot of fenced land. The individual cannot control where the fence stakes are placed. But every person determines for herself how she maneuvers within the enclosed space. That I have ulcerative colitis is a fence post hammered into the ground at a very unfortunate angle. How I live my life with the disease is my decision.

And my decision is to be hopeful. There is evidence to support that hope. For starters, those 26 pills, which represent the achievements of a host of scientists and the sustained investments of pharmaceutical companies. With so many resources invested in my disease, it is likely that medical advances will generate improved therapies.

I feel hopeful, too, when I consider the immense creativity of the natural environment. In a world with the imagination to invent emeralds and giraffes, Spanish moss, hound dogs and icicles, it's not quite so hard to believe that my life will evolve nicely, with or without the benefit of organizational tendencies.

Trusting in something outside myself is difficult. But I can say that I am learning to believe that things will work out well, just because they will. In one form or another, my life will continue, and it will continue to include the man I am marrying, family, friends, helpful strangers, gregarious toddlers. At least, it will for now. And that's a start."

Loren Berlin lives in North Carolina and works at Self-Help, a group that aids low-income families.