Crohn's in Women
Crohn's Disease In Women...
Because Crohn's disease has a tendency to form fistulas, it may involve
other organs near the site of the inflammation. Gynecologic involvement is
frequent, diverse and often difficult to diagnose. Inflammation involving
adjacent structures has been reported in as many as one third of patients.
Fistulas to the vagina, uterus, ovaries, perineum and vulva also have been
reported. Diagnosis may not be obvious if pelvic involvement precedes active
bowel disease, or if drainage is clear or mucoid. Abscesses,
edema and ulceration of the perineum or vulva are common, and are caused by
direct extension from the involved bowel or by granulomas separated from the
bowel by normal tissue. Lesions presenting with vulvar hypertrophy, a fluctuant
mass or ulceration are easily misdiagnosed. Menstrual abnormalities are
reported in more than one half of patients. Pelvic manifestations of Crohn's
disease can be psychologically crippling. Patients or physicians may be
hesitant to address serious psychosocial morbidity. To optimize management,
physicians must be aware of the diverse manifestations, confusing presentations
and psychologic morbidity of Crohn's disease. (Am Fam Physician 2001;64:1725-8.)
Enteric Fistulas
Transmural inflammation penetrating directly into adjacent organs is common in Crohn's disease, and internal fistulas have been reported in as many as one third of patients. In pelvic structures, enterovesical fistulas are less common in women than in men because of the anatomic position of the uterus and adnexa between the bowel and the bladder in women. These fistulas are associated with dysuria, pneumaturia, suprapubic pain and increased urinary frequency. In women, transmural extension of inflammation from the rectosigmoid colon to the vagina is more common. If the diagnosis is unclear, polymicrobial infections or symptoms refractory to treatment may be clues to a fistula. A perirectal fistula may rupture directly into the vagina.
In a patient with longstanding active bowel inflammation and severe perianal disease who develops a fecal vaginal discharge or passage of gas vaginally, the diagnosis is apparent. However, an enterovaginal fistula may be the presenting feature of Crohn's disease and can be misdiagnosed as being the result of diverticulitis or bowel cancer. Ileal-vaginal fistulas or small fistulas with a clear discharge may not be assessed correctly or may be treated inappropriately as a primary vaginal infection. Diagnosis may be difficult. Usually, a careful examination while the patient is under anesthesia, including vaginoscopy and rectal insufflation while the vagina is filled with saline, will allow the physician to identify the fistula tract. In some cases, a water-soluble rectal Gastrografin enema will demonstrate the underlying pathology. When suspected, communication may sometimes be confirmed by instilling methylene blue stain rectally and documenting dye impregnation on a previously placed vaginal tampon. A fistulogram using contrast dye or methylene blue instilled via a perineal sinus or vaginal opening may be diagnostically helpful.
Transmural intestinal inflammation from the ileum, the proximal colon or the rectum may involve any part of the female reproductive tract. Fistulas have been reported to the uterus, adnexa, vulva and perineum, as well as to the skin, umbilicus and submammary region. Patients with known inflammatory bowel disease should be questioned routinely about skin lesions, especially in the pelvis. Careful physical examination may reveal unsuspected or unmentioned cutaneous erythema, induration, ulceration or drainage.
In August 1998, an antitumor necrosis factor alpha chimeric monoclonal antibody
(infliximab; Remicade), the first cytokine-targeted therapy, was approved by the U.S. Food and Drug Administration for use in patients with severe Crohn's disease. Results in patients with previously refractory enterocutaneous fistulas have reportedly been promising. This agent may prove to be useful in the treatment of gynecologic fistulas in Crohn's disease.
Vulvar and Perineal Disease
Abscesses, draining sinuses, edema and vulvar or perineal ulceration are common in patients with Crohn's disease. Physicians must be aware that such involvement may precede bowel symptoms, and these conditions can be misdiagnosed. In patients with known Crohn's disease, any perineal disorder should be considered to be associated with the underlying inflammatory bowel disease. Evidence suggests that in patients with Crohn's disease, vaginal delivery with episiotomy may be associated with a high rate of subsequent perineal disease. Crohn's disease should be suspected in patients whenever severe perineal disease or a rectovaginal fistula develops after vaginal delivery. In patients presenting with ulcerative vaginal lesions, a diagnosis of Crohn's disease must be considered. Excellent results treating perianal and perineal Crohn's disease have been achieved with metronidazole (Flagyl) therapy and increased use of an immunomodulating therapy, including the use of mercaptopurine (Purinethol), azathioprine (Imuran) and antitumor necrosis factor (Anti-TNF)
Vulvar involvement may be caused by direct extension from the involved bowel. Rarely, vulvar granulomatous lesions caused by Crohn's disease that have no connection to the gastrointestinal tract, and ulcerations occurring secondary to pyoderma gangrenosum (a cutaneous complication of Crohn's disease) have been reported. Vulvar squamous cell carcinoma has also been known to arise in such lesions. These lesions may present as unilateral vulvar hypertrophy, a fluctuant vulvar mass, erythema, or draining fistulas, nodules or pustules with necrotic tissue centrally. Biopsy may be crucial to a correct diagnosis. These disorders may be confused with abscess of a Bartholin's cyst, tuberculosis, actinomycosis, lymphogranuloma venereum or metastases, or may mimic genital herpes infection. Physicians must be alert to the complications of vulvar involvement; attempts to incise and drain these fistulas or skin lesions have been associated with a high risk of tissue breakdown, recurrence, delay in appropriate treatment and advancement of further disease.
Menstrual Abnormalities
In one study, menstrual abnormalities (including amenorrhea, irregular menses, dysmenorrhea and menorrhagia) were reported in 58 percent of 360 women with Crohn's disease. Multiple contributing factors are likely, including the influence of chronic disease, poor nutrition and medications. Physicians should be aware that nonsteroidal anti-inflammatory drugs have, in some cases, exacerbated underlying inflammatory bowel disease. These medications are commonly used to treat dysmenorrhea but should be used with caution in patients with Crohn's disease or ulcerative colitis. In some patients, differentiation of pain caused by Crohn's disease and dysmenorrhea may be impossible.
Granulomatous Salpingitis and Oophoritis
In rare instances, Crohn's disease is a cause of granulomatous lesions involving the fallopian tubes or the ovaries, usually by direct extension of the inflammatory process from the bowel. These lesions commonly present with unilateral pelvic pain or a pelvic mass, and may masquerade as pelvic inflammatory disease, endometriosis, active intestinal inflammation, appendicitis, diverticulitis or primary ovarian pathology. The diagnosis of Crohn's disease should be considered when a patient presents with an adnexal mass. Computed tomographic scanning with oral contrast medium will demonstrate a thickened abnormal ileum, and barium contrast studies will document primary bowel pathology. Extensive adnexal disease may also impair fertility.
Psychosocial Manifestations
Pelvic manifestations of Crohn's disease may have a negative psychologic impact, such as damaged self-image, impaired sexuality and increased social dysfunction. It is important to discuss sexuality issues with these patients. Perineal pain with intercourse is common in women with a perineal fistula or abscess. Some patients complain of severe rectal pressure during intercourse or are sexually inhibited because they fear rectal incontinence.
Psychosocial functioning may be impaired by poor body image, embarrassment associated with ileostomy and the debilitating effects of chronic disease. Malnutrition, side effects from medication and frequent problems with pain and diarrhea contribute to psychosocial dysfunction. Post-proctocolectomy, the anatomic position of the vagina is commonly reoriented posteriorly, which can create a predisposition to increased pooling of vaginal secretions and heavy vaginal discharge. Fecal incontinence may be caused by the following: voluminous diarrhea, the destructive effect of inflammatory bowel disease on rectal sphincter competency, active rectal or perineal Crohn's disease, and side effects of previous surgery. However, some women report enhanced social functioning after surgery, most likely because of improved health and sense of well-being.
Health care professionals who treat women with Crohn's disease should be aware of the diverse spectrum of gynecologic disease in these patients and the inherent difficulties of accurate evaluation. It is vital that physicians remember the comforting power and practical importance of the physician/patient relationship. Even patients who are accustomed to discussing their bowel habits may never address the serious psychosocial disabilities of this chronic illness. Understanding the complex relationship between this disease and the effects it has on the patient's psyche, sexuality and socialization helps to validate the patient's complaints. Contemporary advances in medical and surgical therapy have decreased morbidity and improved prognosis in patients with Crohn's disease.
Some commonly asked questions:
Crohn’s disease and ulcerative colitis are primarily
diseases of young people, and women are as likely to
be affected as men. If you are a woman with IBD, it
is important to understand how the events in a
woman’s life—menses, pregnancy, and menopause—
can affect the course of your disease, and how your
disease, in turn, can affect these milestones.The
questions in this brochure are those asked most
frequently by patients and their physicians.
The answers are based upon available data from
studies in women with IBD.
WHY ARE MY PERIODS IRREGULAR
WITH THIS DISEASE?
Many factors contribute to regular menstrual periods,
including hormone levels, adequate nutrition, and
amount of stress.When a woman has active disease,
the inflammation itself can cause the body to shut
down normal hormone function. Restoring health is
the mechanism to restore regular periods.
MY DISEASE ALWAYS SEEMS TO
BE WORSE THE WEEK BEFORE
OR THE WEEK OF MY PERIOD.
IS THIS COMMON?
Yes, this pattern is common for many diseases,
actually. It is important to appreciate the fluctuation
in symptoms that may be associated with menses,
so that you are not over-treating your disease when
symptoms may wax and wane based on your cycle.
IS THE PILL SAFE TO USE
IF I HAVE IBD?
There is no evidence to suggest that the pill causes
either ulcerative colitis or Crohn’s disease. It is
regarded as safe in ulcerative colitis.There are some
studies that suggest that being on the pill can make
Crohn’s worse, but most of the women in these
studies were also smokers, a habit we know makes
Crohn’s disease worse.
IS IT SAFE TO HAVE A COLONOSCOPY
DURING MY PERIOD?
Yes.There are no increased risks to the procedure
associated with menstrual flow.
IS IT COMMON TO HAVE PAIN DURING
INTERCOURSE IF I HAVE CROHN’S
DISEASE OR ULCERATIVE COLITIS?
There is no reason that ulcerative colitis should cause
dysparuneia (the medical term for painful sexual
intercourse). For women with Crohn’s disease,
dysparuneia may signal active disease in the perianal
region or a fistula in the vagina. Although this may
be embarrassing to talk about, you should discuss this
symptom with your gastroenterologist and/or
gynecologist.
ARE MY CHANCES OF HAVING IRON
DEFICIENCY HIGHER WITH IBD?
Yes, the chances are higher for you than for women
of the same age who do not have IBD. Not only is
there the normal loss of iron from menstrual flow,
but also the increased chance of bleeding, and the
decreased absorption of iron from inflamed small
intestine make the chances higher.
CAN WOMEN WITH CROHN’S DISEASE
OR ULCERATIVE COLITIS CONCEIVE
AS EASILY AS OTHER WOMEN?
Generally, yes. Studies have shown that women with
ulcerative colitis have the same rate of fertility as
women without IBD. Studies of the fertility rates
of women with Crohn’s disease are conflicting.
One large study showed no difference in fertility
rates, but older studies and a more recent one show
a slightly decreased rate of conception in women.
This is true for active Crohn’s disease, not quiescent
disease, where the rate looks to be the same as in
the normal population.
If the male partner is taking sulfasalazine (Azulfidine®),
temporary male infertility may occur because this
drug decreases sperm production, a reversible side
effect. Before attempting conception, the male partner
should stop the sulfasalazine and/or change to a 5-
ASA compound, such as Asacol,® Canasa,® Colazal,®
Dipentum,® Pentasa,® or Rowasa,® which has not been
shown to interfere with sperm production.
WILL PREGNANCY HARM A
WOMAN WITH CROHN’S DISEASE
OR ULCERATIVE COLITIS?
Any woman contemplating pregnancy should
consider the state of her health before conceiving.
It is a good idea for a woman to have her disease
in remission before pregnancy.According to recent
studies, women with either illness should do well
during the pregnancy if disease was inactive at the
time of conception. If a pregnancy occurs during
a period of active disease, however, either disease is
likely to remain active or to worsen.This worsening
generally occurs during the first trimester (three
months) in ulcerative colitis, and during the first
trimester or the few months immediately after
delivery in Crohn’s disease.There is also a subset of
women whose disease will actually get better.
One study has suggested a relationship between the
amount of shared genetic information between
mother and child; the more alike they are, the worse
the disease will be.
CAN CROHN’S DISEASE OR
ULCERATIVE COLITIS AFFECT
THE PREGNANCY AND DELIVERY,
OR CAUSE HARM TO THE NEWBORN?
Most pregnant women with these illnesses have normal
deliveries and healthy babies in roughly the same
proportions as healthy women in the general population.
If there is a problem affecting the pregnancy, it
generally occurs in women with active Crohn’s
disease.These women run a greater risk of premature
delivery, stillbirth, or spontaneous abortion. If the
symptoms become severe enough to require surgery,
the risk to the fetus becomes even greater.There are
a few studies that show that the rate of C-section
is higher in women with IBD, but this is due to
physician preference, and not any scientific fact.
DO THESE DISEASES EVER BEGIN
DURING PREGNANCY?
There are many reports of ulcerative colitis starting
during pregnancy, but recent studies suggest that this
time of onset makes the condition no worse than at
any other times of symptom onset. Crohn’s disease
may also begin during pregnancy. Both diseases may
begin during the postpartum period (the weeks
immediately following delivery), but this is very rare.
IS IT SAFE TO TAKE 5-ASA COMPOUNDS
SUCH AS SULFASALAZINE, OR
MESALAMINE, OR PREDNISONE
(CORTICOSTEROIDS) DURING
PREGNANCY?
It is only natural for the pregnant woman and her
obstetrician to want to restrict all medications during
pregnancy to avoid possible harm to the fetus. Sulfasalazine,
prednisone and the 5-ASA compounds
(Asacol,® Canasa,® Colazal,® Dipentum,® Pentasa,®
Rowasa®) are the drugs used most commonly to
control the symptoms of Crohn’s disease and ulcera-
tive colitis. A national study has found no evidence
that the fetus is harmed by sulfasalazine or prednisone
taken by the mother during pregnancy.Another study
done in a prospective manner showed the safety of 5-
ASA during pregnancy, with no increase in adverse
events. (In this type of study, researchers follow a
patient population over a period of time, in order to
compare specific data from the beginning of the
study to the end.)
Because the major threat to the pregnancy appears
to come from the active disease itself and not from
the medication, these drugs should not be discontinued
just because a woman becomes pregnant. If either
disease worsens severely during the pregnancy,
prednisone, sulfasalazine, or a 5-ASA compound may
be introduced or increased. Sulfasalazine or a 5-ASA
compound may also be used to maintain a remission
for the remainder of the pregnancy and after.
ARE THE SIDE EFFECTS OF THESE
DRUGS GREATER WHEN THEY ARE
TAKEN DURING PREGNANCY?
No. But sulfasalazine may cause nausea, which adds to
the nausea commonly experienced in early pregnancy.
The drug also may cause heartburn very much like
the heartburn sometimes experienced in pregnancy.
SHOULD A WOMAN TAKING
SULFASALAZINE OR PREDNISONE
NURSE HER BABY?
Yes, if she wants to. Although some sulfasalazine does
pass into the breast milk, its concentration is much
reduced, and it has not been shown to harm the
newborn. Five-ASA compounds and immunomodulators,
such as 6-MP and azathioprine (Imuran®),
have not been shown to harm the newborn during
nursing. However, there is one report of a nursing
baby developing diarrhea following the mother’s
administration of a 5-ASA rectal suppository.The
baby’s diarrhea stopped when the mother’s therapy
stopped.When clinically feasible, the dosage of prednisone
should be reduced and the drug discontinued
as quickly as possible in any patient, whether pregnant
or not. If a mother wishes to nurse her baby while
still taking a moderate or high dose of prednisone,
the baby should be monitored by the pediatrician.
ARE IMMUNOSUPPRESSIVE DRUGS SUCH
AS AZATHIOPRINE, CYCLOSPORINE, AND
6-MERCAPTOPURINE SAFE TO TAKE
DURING PREGNANCY?
While some animal studies have shown genetic
damage to occur in offspring, these animals
were given very high doses of these medicines,much
higher than that used in humans. Our evidence
comes from the long experience of women on these
medications for transplants who have done well.
Talking with investigators who have treated many
women with these drugs has failed to show any
increase in the number of adverse outcomes.
Again, the importance of keeping disease inactive
overrides the risk of these medications on the fetus.
IS IT SAFE TO HAVE A REMICADETM
INFUSION DURING PREGNANCY?
The effects of Remicade (infliximab) have not been
studied on pregnant women. It may turn out that it is
safe, but currently the recommendation is to not give
it if a woman is known to be pregnant.
IS THERAPEUTIC ABORTION EVER
RECOMMENDED FOR ANY REASON
IN IBD PATIENTS?
Therapeutic abortion is rarely, if ever, performed for
active IBD. Instead, the patient is treated vigorously
with drug therapy in an effort to control symptoms.
Simply having a diagnosis of IBD is not a reason in
and of itself for an abortion.
WHICH DIAGNOSTIC PROCEDURES
ARE SAFE TO PERFORM
DURING PREGNANCY?
Abdominal ultrasound, sigmoidoscopy, rectal biopsy,
upper endoscopy and colonoscopy are safe in
pregnancy if necessary for diagnosing or managing
the disease.An MRI scan is probably safe, but more
information is needed. Diagnostic x-rays should be
postponed until after delivery. If a medical emergency
necessitates an x-ray, however, it should be a limited
study, and the baby should be shielded.
IS SURGERY FOR IBD EVER
PERFORMED DURING PREGNANCY?
Whenever possible, surgery should be postponed
until after delivery. If the disease is severe and not
responding to drug therapy, however, it may be
more dangerous to the patient not to operate. It
is a matter of weighing the risks. Although there
are reports of intestinal resections and even of
ileostomies performed successfully in pregnant
women, when any abdominal surgery is performed,
the likelihood that the fetus will survive is reduced.
DOES PREVIOUS BOWEL SURGERY
AFFECT THE COURSE OF PREGNANCY?
In Crohn’s disease, previous bowel resection does
not appear to affect the pregnancy in any way. In fact,
since resection usually results in remission of
symptoms, the patient is likely to do better during
the pregnancy than she would have with smoldering
disease.There is one study in the literature that
suggests that pregnancy protects against further disease
and that there may be fewer operations in women who
have been pregnant versus those women who have
not been pregnant.The results of this study have yet
to be duplicated by other investigators. After ileoanal
anastomosis for ulcerative colitis, women have had
successful outcomes in pregnancy.Women with
ileostomies for ulcerative colitis or Crohn’s disease
occasionally suffer prolapse or obstruction of the
ileostomy during pregnancy. If possible, it is best to
postpone pregnancy for one year after the ileostomy
is constructed (whether conventional or a newer
procedure) to allow the body time to adapt to it.
In Crohn’s disease complicated by abscesses or fistulas
around the rectum and vagina, episiotomy (standard
surgery to widen the birth canal during labor) may
have to be avoided if involving the diseased perianal
area. In these cases, delivery is by Caesarian section.
IF ONE PREGNANCY IS COMPLICATED
BY ACTIVE IBD, ARE FUTURE
PREGNANCIES LIKELY TO BE AFFECTED
IN THE SAME WAY?
There is no evidence that the course of either
disease during any pregnancy will be the same
during subsequent pregnancies.
WHAT ARE THE CHANCES THAT THE
CHILD OF A MOTHER WITH IBD WILL
DEVELOP ONE OF THESE DISEASES?
It is possible, but certainly not inevitable, that the
child of a mother with one of these illnesses might
develop either illness. Recent studies suggest that the
risk to the offspring of developing IBD if one parent
has the disease is about nine percent, and if two
parents have the disease, as high as 36 percent.
When IBD clusters in families, there does not seem
to be any clear-cut mode of inheritance. Because
of this, the diseases are called “familial” and not
“genetic.”At present, no one can predict whether a
child will “inherit” the disease from his or her parent.
If a child is to develop IBD, one cannot predict at
what age it will happen.
DO PREGNANT WOMEN WITH IBD
NEED TO FOLLOW A SPECIAL DIET?
In general, the pregnant woman with Crohn’s
disease or ulcerative colitis should follow the same
well-balanced diet recommended for all pregnant
women.The obstetrician and/or gastroenterologist
may recommend the addition of specific foods,
vitamins and minerals. It is particularly important
that any woman who is on sulfasalazine therapy
while pregnant supplement her diet with plenty
of folic acid.This is recommended to prevent birth
defects seen in any woman with a diet deficient in
this nutrient.
DO EMOTIONAL FACTORS CAUSE
FLARE-UPS OF THE DISEASE DURING
PREGNANCY OR IN THE WEEKS
FOLLOWING DELIVERY?
Emotional stress may cause symptoms to worsen
during pregnancy, just as it can at any other time.
But this does not mean that stress plays any role
in causing the disease. Similarly, the postpartum
period is a time normally characterized by rapid
change, both physical and emotional, in the new
mother.These changes also may cause a temporary
worsening of symptoms.
ARE MY CHANCES OF HAVING OSTEOPOROSIS
HIGHER IF I HAVE IBD?
Yes, they are. Crohn’s patients are particularly at risk
for osteoporosis secondary to decreased calcium
intake or absorption, steroid use, and smoking.
After menopause, this risk becomes even higher,
as a majority of IBD patients in the United States
are Caucasian. (Caucasians are at a higher risk
for osteoporosis.)
DOES HAVING IBD HAVE AN EFFECT
ON MENOPAUSE?
No. If the disease is inactive and periods are regular,
menopause occurs naturally. Surgical menopause has
been noted to have a positive effect on symptoms
that otherwise occur with menses.
On behalf of learning, and use as teaching tools for those of us who need to
know about our disease, I have tried to supply you with as much information as
I could find on all of the drugs, treatments and disorders associated with
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