Ulcerative Colitis Blog

A common question among female UC patients is how pregnancy may affect their disease course. Women with UC often wonder whether the hormonal changes associated with pregnancy will make their disease flare or if disease activity may change after delivery. Current studies indicate that the activity of a woman's colitis during pregnancy is dependent on the state of her disease at the time of conception. For women whose colitis is well-controlled at the time they become pregnant, 70-80% can expect their disease to remain quiet throughout the pregnancy. This is in contrast to those who have symptoms of active colitis at the time of conception, for whom disease relapse rates during pregnancy can be as high as 50-70%. There is no consistent evidence to suggest that different trimesters confer greater or lesser risks for flaring. Research has shown that the most common reason for relapse during pregnancy is the cessation of medical therapy for UC. As such, UC patients who are considering becoming pregnant should discuss with their physician the compatibility of their medication regimen with pregnancy. Women who have undergone colectomy with an ileoanal pouch generally do well during pregnancy, although 20-30% of patients may experience increasing numbers of bowel movements and fecal incontinence later in the gestation period. These symptoms generally resolve after delivery with resolution of pouch function.

Disease activity in the post-partum period seems to be dependent on the status of disease at the time of delivery. One study examining this issue found that only 13% of women with quiescent disease at delivery flared in the post-partum period, as compared to 53% of women who had active disease at delivery (Beniada, et al, Journal of Gynecology, Obstetrics, and Biological Reproduction 2995; 34:581-8). Furthermore, post-partum activities such a breastfeeding have not been shown to adversely affect disease activity. Similar to disease flares during pregnancy, it seems that flares post-partum are most likely attributable to discontinuation of UC medications.

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.

Many UC patients have questions regarding the safety of their medications during pregnancy. It is important that women with UC who are considering pregnancy discuss appropriate therapy with their physician. Below is a brief review of the current safety information of UC medications in pregnancy.

Safe
1) Sulfasalazine - Women taking sulfasalazine should take 2mg of folate/day to diminish the risk of neural tube defects

2) 5-ASA medications - Both oral and topical formulations safe in pregnancy

3) Corticosteroids - Possible increased risk of cleft lip and palate deformities when used in the first trimester; otherwise safe and benefits felt to outweigh risks

Likely safe
1) Azathioprine/6-mercaptopurine - Data from use in humans does not show an increased risk of fetal malformations or spontaneous abortions

2) Budesonide - There is limited data regarding the use of budesonide in pregnant IBD patients, however, experience from use in women with asthma during pregnancy suggests it is likely to be safe

3) Infliximab - No difference in rates of fetal malformations, miscarriage, obstetric or neonatal complications between infliximab exposed women and the general population

4) Adalimumab - Preliminary data in animals does not show an increased risk of fetal malformations or obstetric complications - studies in humans are ongoing

5) Cyclosporine - Information from use in transplant patients suggests it is safe in pregnancy

6) Loperamide - Felt to be of low risk but prolonged use is best avoided

Unlikely to be safe
1) Diphenoxylate - Known to cause birth defects in animals

2) Cholestyramine - While cholestyramine does not cause birth defects, it may result in deficiencies of fat soluble vitamins in the fetus or mother

3) Tacrolimus - Possible risk of fetal malformations and premature delivery based on studies in transplant patients

Contraindicated
1) Mycophenolate mofetil - High rates of fetal malformations and miscarriage in animal studies and research in transplant patients

In response to a recent blog on disease activity and UC, Jennifer wrote in with a good question about whether the use of steroid enemas would decrease potential risks to the fetus compared to oral steroid therapy in active colitis. My base answer to this question is that it would depend on the individual characteristics of a patient's disease. Some important considerations are:

1) Extent of disease - For women with mild disease limited to the sigmoid and rectum (so-called "proctitis" or "proctosigmoiditis") steroid enemas may be viable and reasonable option. There is a paucity of data on how much of the topical steroid is absorbed through the GI tact and transferred across the placenta to the fetus. The scientific literature generally agrees that if placental transfer of steroids from the enemas occurs, it is likely low. In this respect, steroid enemas can be viewed at least equally as safe as oral steroids, and theoretically may transfer less steroid across the placenta. Note, however, that data to answer this precise question are not available.

2) Severity of disease activity - As discussed in prior blogs, the number one risk factor for complications to the fetus is active disease. It cannot be stressed enough how important it is for measures to be taken to ensure quiescent disease during pregnancy. That being said, for women with moderate to severe disease activity the use of oral steroids for flares is advised because the benefit to the fetus outweighs the risks. This principle holds true even for women with proctitis or proctosigmoiditis - if their disease does not appear to be controlled with topical steroids, then treatment with oral steroids is advised.

3) Pregnancy trimester - Rectal steroids are felt to be appropriate in mild, limited rectosigmoid disease during the first 2 trimesters of pregnancy. The use of rectal steroids is not recommended during the 3rd trimester.

As there are unique aspects to every patient, readers are encouraged to discuss information from the blog with their health care providers to better understand how these issues may impact their individual care.

You've probably seen the signs at your doctor's office, the pharmacy, and even the grocery store that flu vaccines are available now. The big question is - "Did you get your flu vaccine this year?" A recent study showed that of over 80% of IBD patients at risk for influenza, only 20% received vaccination to prevent the disease (Melmed G, American Journal of Gastroenterology 2006; 101(8)1834-40).

Fast facts about influenza:
What is influenza?
- Influenza is a virus that travels worldwide
- The virus changes every year and that is why yearly vaccination is recommended
- It is transmitted from person to person by secretions in sneezes and coughs
- The disease typically peaks between December and March (this is why people need to
get vaccinated in the Fall)
- Flu symptoms can include: fever (temperature > 100.5 degrees F), muscle aches, cough,
sore throat, runny nose, headache. eye pain, and chest discomfort

Who should be vaccinated for influenza? (From the Center for Disease Control, Atlanta, GA)
- Children aged 6 months until their 5th birthday
- Pregnant women
- People 50 years of age and older
- People of any age with certain chronic medical conditions
- People who live in nursing homes and other long term care facilities
- Household contacts of persons at high risk for complications from the flu
- Household contacts and out of home caregivers of children less than 6 months of age
(these children are too young to be vaccinated)
- Healthcare workers

Why is influenza vaccination important to IBD patients?- Patients with IBD are considered to have a chronic condition and are therefore at higher risk
of contracting the illness
- Patients on immune suppressive agents may be at higher risk of disease

What time of the year are influenza vaccines available?- Flu vaccines are available from October through mid-November

Is there any reason not to be vaccinated? People who should not be vaccinated (per CDC):
- People who have a severe allergy to chicken eggs
- People who have had a severe reaction to an influenza vaccination in the past
- People who developed Guillain-Barré syndrome (GBS) within 6 weeks of getting an
influenza vaccine previously
- Influenza vaccine is not approved for use in children less than 6 months of age
- People who have a moderate or severe illness with a fever should wait to get vaccinated
until their symptoms lessen

Where are influenza vaccines given?
- Doctor's offices - primary care facilities and gastroenterology offices
- Pharmacies (Check with your local chain)
- Grocery stores (Check with your local chain)
- Occupational health at your place of employment
- Student health centers
- Local Department of Public Health (Check your public listing)

The most common reason I hear that people are afraid of getting a flu shot is the concern that they will contract full symptoms of the illness. Because of my high risk as a health care worker, I had vaccinations for influenza, diphtheria, tetanus, and pertussis done through my hospital all on the same day. My arms were a little sore for a couple days, but that was the worst of it. I did not develop symptoms of any of the illnesses I was vaccinated for.

If you have not yet been vaccinated for influenza this year, please contact your physician to discuss your risk factors and need for immunization.

There are a lot of acronyms used in the medical field which can cause confusion for patients and practioners alike. A common question people have is, "What's the difference between IBD and IBS and is it possible to have both at the same time?"

First, a few definitions:

IBD = inflammatory bowel disease, encompasses a spectrum of disorders of the intestine including Crohn's disease, ulcerative colitis, and indeterminate colitis. The root of all of these disorders is a dysregulation of inflammation in the body, commonly targeted to the gut. The inflammation of IBD causes damage to the lining of the intestine resulting in an ulcerated appearance to the tissue on colonoscopy.

IBS = irritable bowel syndrome (popularly known as "spastic colon"), is a gastrointestinal disorder caused by hypersensitivity of the nerves which line the intestines. Our guts are always in motion, moving in waves of muscular contractions to help digest food (peristalsis). For most individuals, the normal movements of the gut are imperceptible. In IBS, there is a dysregulation of the how sensations are felt by the nerves in the gut causing people to feel uncomfortable even with normal peristalsis. In contrast to IBD, the lining of the intestine on colonoscopy looks normal. It is the abnormal nerves impulses that cause symptoms.

How are IBD and IBS similar?
The main similarity between IBD and IBS is that patients with either of these conditions can have very similar symptoms. Symptoms that are associated with both IBD and IBS include: abdominal pain, diarrhea, constipation, urgency, bowel frequency, bloating, nausea, and changes in appetite. Another similarity is that in a subset of patients, IBD or IBS can be triggered by a gastrointestinal infection.

How are IBD and IBS different?
IBD and IBS differ in terms of the underlying cause of the disease process, some symptomatology, laboratory tests, and treatment. As mentioned above, IBD is caused by inflammation in the intestine, whereas symptoms of IBS are cause by hypersensitivity of the nerves in the gut. Furthermore, there are some symptoms which are found in IBD that are not typically seen in IBS, including: bloody stool, weight loss, fever, oral ulcers, skin rashes, joint pains. In order to distinguish between the two, physicians rely on patient histories as well as lab tests and endoscopic results. In IBD, lab tests can indicate inflammation in the blood and stool; in IBS, these lab tests are usually normal. As noated above, inflammation of the lining of the intestine is typically seen on colonoscopy in IBD, whereas, the lining of the intestine looks normal in IBS. Finally, the treatments for the two conditions are vastly different.

Is it possible to have both IBD and IBS at the same time?
While the majority of IBD and IBS patients carry one diagnosis exclusively, it does appear that a small subset of individuals can have both. Often times this occurs in the setting of IBD when a patient has flare symptoms but turns out to have normal lab values and endoscopic tests. For these individuals, some of the medicines that treat spasms in IBS may be helpful.

A question was posted by Jack as to how to manage symptoms of ulcerative proctitis (UP) when titrating steroids. While I cannot provide advice specific to individual cases through this blog, there are some generalities regarding treatment of UP that can be discussed.

Treatment of active UP
UP refers to inflammation solely involving the rectum (up to 10-15cm from the anus). Because UP is limited to a very small portion at the end of the colon, suppository and enema therapy is usually first line. Rectal 5-ASA medications (mesalamine) are an appropriate choice when initiating therapy for UP. Suppositories supply medication to the last 10-15cm of the rectum, while enemas (liquid, gel, or foam) deliver medication further up the left colon. Most patients find the suppositories easiest to use. If symptoms persist after 4 weeks of daily rectal therapy, there may be benefit to adding oral 5-ASAs 2.4- 4.8 grams/day. Alternatively, some patients may benefit from adding or switching to a rectal steroid suppository or foam. It should be noted that rectal steroids are absorbed systemically and if used on a regular basis, one can develop steroid-related side effects. As such, rectal steroids are appropriate for inducing remission of disease, but their use as a maintenance agent should be avoided.

Oral steroids are reserved for patients not responding to rectally administered 5-ASAs/and or rectal steroids or to oral 5-ASA medicines. Treatment with prednisone 40mg daily usually results in quick resolution of symptoms. High doses of steroids are used for 1-2 weeks until symptoms improve and are then tapered 5-10 mg per week. The rate at which steroids are decreased depends on a patient's symptoms and overall clinical picture. Slowing the taper or decreasing by 2.5mg increments may help some patients. After decreasing doses, it may take time for the body to adjust. If oral steroids are used, it is recommended that patients continue their prior treatment (rectal 5-ASA/steroid +/- oral 5-ASA) in addition to the steroids. The goal is to use these medications to maintain remission once the prednisone is tapered off.

Treatment of UP refractory to 5-ASA medicines and oral steroids
When patients continue to experience symptoms despite the addition of oral steroids, there are a number of considerations:
1) Is there a gastrointestinal infection present resulting in symptoms?
2) Are patients taking non-steroidal medications like ibuprofen? These medications can worsen
IBD and patients are advised not to take them.
3) Did the symptoms worsen after the addition of a 5-ASA medicine? Some patients will have a
hypersensitivity reaction to this class of medicines which resolves when the medicine is
stopped. The symptoms of a hypersensitivity reaction are usually abdominal pain and
diarrhea.
4) Did the patient just stop smoking cigarettes? Smoking cessation has been associated with
UC.
5) Were the rectal therapies stopped or not been given consistently? Discontinuing rectal
therapies may make disease worsen.

With regard to treatment options, there is no one right answer. While there is insufficient evidence for the routine use of antibiotics in UP and UC, there are reported cases of people with refractory disease improving on antibiotics. As such, a trial of an antibiotic such as ciprofloxacin or metronidazole may not be unreasonable. For ex-smokers, anecdotes of using nicotine patches have suggested they may be of benefit in this subgroup. Finally, escalation of therapy to azathioprine/6-mercaptoputrine, cyclosporine, or infliximab may be considered.

Although most people with IBD are diagnosed after 20 years of age, the incidence of IBD in children and adolescents appears to be increasing. It is estimated that of the 1 million individuals living with IBD in the US, approximately 100,000 are under the age of 18. Furthermore, about 25% of people will develop their first symptoms in adolescence before coming to diagnosis. There are a variety of aspects of IBD in the young that differ from that in adults:

Relationship to age
The peak onset of IBD in children is typically during adolescence between 12-15 years. It can, however, develop as early as the first year of life. An interesting observation that has been made in several studies is that UC and indeterminate colitis tend to predominate in the youngest patients (< 5 years of age). As children approach adolescence, Crohn's disease becomes more common.

Growth and puberty
Chronic disease during adolescence can impact the attainment of one's genetic height potential and delay pubertal development. Numerous studies have demonstrated that children with IBD are at risk of growth and pubertal problems, albeit more so for Crohn's than UC. Growth and pubertal delay result from a combination of inflammation in the body, malnutrition from poor gut absorption/ lack of appetite, and steroid side effects. Generally once the disease process is controlled, growth and pubertal development resume as normal.

Social and emotional development
Adolescence is a key time of both social and emotional development. Teens are faced with the tasks of developing autonomy and self-image. Coping with a chronic illness like IBD during this period in life can be especially stressful. It is a time when children most want to fit in with their peers, but their health problems may make them feel like they are worlds apart from others. They may feel uncomfortable talking about what they are going though even with family or close friends. Parents and physicians caring for teens with IBD need to pay particular attention for signs suggesting certain children could need additional emotional support

Future risk for colon cancer
The risk of colon cancer in UC is believed to be related to duration of disease, extent of disease through the colon, associated primary sclerosing cholangitis (PSC), as well as chronic inflammation. Thus, the longer one has the disease and the more active and extensive it is, the greater the risk of developing colon cancer. This is an important consideration for people diagnosed at a young age. For UC patients without PSC, it is recommended that routine colonoscopies are performed starting 8 years after diagnosis. Colonoscopies are then performed every 1-3 years depending on associated risks for the patient. Because there is a greater risk of colon cancer in patients with UC and PSC, colonoscopies are performed at diagnosis and then yearly in such individuals.

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.

Attention to bone health is important in IBD. Patients with IBD are at risk for osteopenia and osteoporosis (weakening of bones secondary to diminished bone mineral density). Possible causes of osteopenia/osteoporosis in IBD are medications (steroids, cyclosporine, methotrexate) and decreased levels of calcium and vitamin D. Other risk factors for diminished bone mineral density include female gender, Caucasian race, older age, low body mass, and cigarette smoking.

To assess the health of your bones, your doctor may order a bone density scan (DEXA). This is simply an x-ray test that measures bone density in the spine and hip; by comparing to standards for healthy individuals, one's risk of osteoporosis can be determined.

If your doctor indicates you are at risk for osteoporosis, calcium and vitamin D supplementation is essential. The recommended daily intake of calcium is 1200 to 1500mg. Because calcium absorption is related to vitamin D levels, patients are advised to take 400 to 800 IU (international units) daily. Calcium is best absorbed when taken after a meal. For patients with clinically significant osteoporosis, bone building medications may be prescribed in addition to calcium and vitamin D supplements. Additional factors that can improve bone health include limiting or eliminating steroids, participating in regular exercise, smoking cessation, and avoiding excessive alcohol intake.