Ulcerative Colitis Blog

In a majority of cases, UC can be managed medically, but there are certain situations when surgery is indicated. Historically, 30-40% of all UC patients eventually underwent removal of the colon, or colectomy.

The following are reasons for colectomy:

1) Medically refractory disease - Flares are either frequent or continuous despite maximal medical therapy.

2) Corticosteroid dependence - When continous steroids are required to prevent flares.

3) Inability to tolerate medical therapy - If the medications cause side effects that are not tolerable or allergic reactions.

4) Dysplasia (pre-cancer) or cancer - Although not all dysplasia requires surgery, some do and all cancer does.

5) Prophylaxis against cancer - For those who do not want to take the chance of getting cancer and do not want to undergo frequent colonoscopy to look for dysplasia an cancer

6) Avoid chronic medical therapy - For those who do not want to take chronic medication.

Many patients ask what is life like after colectomy. Will I be able to work, play, socialize, and be active? How will it affect sexual intercourse?

There are two types of surgeries commonly performed for ulcerative colitis.

1) The colectomy with end-ileostomy involves removing the entire colon and bringing the end of the small intestine to the skin where it empties into a bag.

2) The ileal pouch anal anastamosis (IPAA) requires multiple surgeries to remove the colon, then construct a “neo-rectum” out of small intestine before reconnected the intestine to the anal canal internally.

End-ileostomy
After this surgery, patients no longer have bowel movements through the anal canal. In most cases the colon is completely removed and the anal canal is closed. If the rectum is left intact as a closed pouch there may be a small amount of mucous passage every week or so. An ostomy bag is worn over the stoma (small bowel protruding through the abdominal wall looking like a mushroom) just above or below the waist line, usually on the right side of the belly. The stoma and bag are only visible when the patient is naked. Three to four times per day the end of the bag is unclipped and the contents are emptied into the toilet.

The ostomy bag has a round opening with adhesive which attaches to the skin around the stoma. There are several brands, sizes, and colors of ostomy bags. The material excreted from the small intestine into the ostomy bag is not feces since it has not passed through the colon and, as a result, does not have the associated odor. It is often pasty and green.

Next week I will discuss the (very small) limitations on activity with a stoma.

Today’s stoma appliances and adhesives are very effective and allow patients to participate in almost any activity they otherwise would. Swimming, running, biking, skiing, and team sports are just a few of the activities which can be performed, although contact sports, such as football and wrestling are not recommended.

Although initially stomas often create anxiety or embarrassment regarding sexual relations, especially with new partners, they place no limitation on sexual activity. It is important to discuss the stoma with your partner as you would any other significant issue affecting your health and body. Although it may take a short period of getting used to, a partner, just like a patient will quickly adjust to its presence.

Most importantly, after a surgery to remove the inflammed colon and create a stoma patients are healthy again and usually notice a dramatic improvement in energy. Consequently, surgery will usually increase the patient’s libido since there is nothing worse for it than feeling ill and having bowel distress.

Ileal pouch anal anastamosis (IPAA) is usuallythe procedure of choice for young, healthy patients with ulcerative requiring colectomy since it requires 2-3 significant surgeries. After completion of the ileal pouch, or neorectum, from multiple loops of small bowel a continuous intestine is re-established.

After surgery it is expected that there will be diarrhea 5-10 times per day, sometimes resulting in dehydration and requiring aggressive anti-diarrheal mediciations. Over the course of weeks to months the diarrhea tapers to an average of 4 soft bowel movements per day.

There is rarely an impact on bowel absorption after IPAA, but because the terminal ileum is used to construct the neorectum with some loss of normal function, there may be B12 deficiency requiring supplemental injections.

A majority of patients develop at least one episode acute pouchitis after IPAA. It results in inflammation of the pouch causing stool urgency and rectal pain. Acute pouchitis responds to short courses of antibiotic or corticosteroid therapy. In about 5% of patients the pouchitis is recurrent, or chronic, requiring frequent or even continuous antibiotics, corticosteroids, or probiotics. Rarely, chronic pouchitis requires pouch resection and creation of an end-ileostomy.

Finally, Crohn’s disease diagnosed after surgery for suspected ulcerative colitis occurs rarely, but more often in patients with indeterminate colitis. Surgical revision to end-ileostomy is usually required.

Here are summaries of two important studies presented at the 2007 CCFA national conference.

ACT 1 and 2 are multi-center studies which tested the effect of infliximab in patients with moderate to severe ulcerative colitis. The initial study results showed that infliximab led to greater response and remission than placebo. A sub-analysis was performed on patients from the ACT 1 and 2 studies to assess the incidence of colectomy at 54 weeks. Patients treated with infliximab had a lower rate of colectomy (14.8% vs. 9.5) 54 weeks after their first infusion. In addition, overall surgeries and hospitalizations were lower in patients treated with infliximab than those receiving placebo.

Dr. Waljee working with Dr. Higgins at the University of Michigan used a novel computerized technique in order to predict optimization of azathioprine and 6-mercaptopurine dosing. The authors used machine learning, a computerized modeling technique, which places different weights on input variables in order to best predict an outcome. The authors found that their computerized algorithm predicted medication optimization better than the current approach of checking blood levels of 6-thioguanine (6-TG) and (6-MMP). Since the algorithm uses blood count and liver tests which are already drawn for routine safety monitoring the costs were lower than commercial metabolite testing. Further studies will be needed to validate the accuracy of this promising approach.

Here are summaries of two important studies presented at the 2007 CCFA national conference.

ACT 1 and 2 are multi-center studies which tested the effect of infliximab in patients with moderate to severe ulcerative colitis. The initial study results showed that infliximab led to greater response and remission than placebo. A sub-analysis was performed on patients from the ACT 1 and 2 studies to assess the incidence of colectomy at 54 weeks. Patients treated with infliximab had a lower rate of colectomy (14.8% vs. 9.5) 54 weeks after their first infusion. In addition, overall surgeries and hospitalizations were lower in patients treated with infliximab than those receiving placebo.

Dr. Waljee working with Dr. Higgins at the University of Michigan used a novel computerized technique in order to predict optimization of azathioprine and 6-mercaptopurine dosing. The authors used machine learning, a computerized modeling technique, which places different weights on input variables in order to best predict an outcome. The authors found that their computerized algorithm predicted medication optimization better than the current approach of checking blood levels of 6-thioguanine (6-TG) and (6-MMP). Since the algorithm uses blood count and liver tests which are already drawn for routine safety monitoring the costs were lower than commercial metabolite testing. Further studies will be needed to validate the accuracy of this promising approach.

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.

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