She was referred to me for a second opinion regarding her diagnosis of Crohn’s disease. (Crohn’s disease is a chronic inflammatory bowel disease. Crohn’s can affect any part of the GI tract, and symptoms vary by patient depending on where the inflammation occurs. Symptoms can include constipation, diarrhea, abdominal pain, vomiting, weight loss or weight gain, and gastrointestinal bleeding.)
When I met Susan, she was clearly at a low: She’d have just a sip of water, then suffer diarrhea. She was having six to ten yellow, watery bowel movements every day, in spite of taking Imodium daily. Plus, she often woke up with fevers, which caused headaches and confusion. She was still able to work as an office manager at the doctor’s office, but her weekends were consumed with sleep. Her eyes were inflamed, and her back was afflicted with arthritis. She also had hip, neck and leg pain, as well as sores in her mouth and a sore on her neck.
Susan had developed abdominal pain, rectal pressure and cysts in one of her ovaries after a hysterectomy for endometriosis a few years prior. She was treated with a large amount of Anaprox (a nonsteroidal anti-inflammatory drug like aspirin) for pain. She tried to tell doctors that the rectal pain reminded her of how she felt before her hysterectomy, but they brushed it off.
Shortly thereafter, Susan began to experience bloody diarrhea. She was admitted to her local hospital. A colonoscopy showed inflammation in her rectum at the end of her colon, and she was told that she had ulcerative colitis. She was treated with a steroid, prednisone, which has many possible side effects, such as diabetes, acne, and weight gain with short-term usage and bone loss and cataracts with long-term usage. Susan’s symptom complex of abdominal pain, rectal pressure or pain and frequent stools occurred almost monthly. She was taking up to nine medications per day and still having a minimum of six bowel movements every day, too. She was also seeing an array of doctors, including a rheumatologist and an ophthalmologist, for side effects brought on by the steroids. Her weight was also fluctuating between 110 pounds (without steroids) and 150 pounds (with steroids). The steroid was eventually tapered down and stopped, and Susan was changed to a nonsteroid compound. She did well for a while, until she developed diarrhea, a whopping twenty-five times per day. She was treated with steroids yet again, despite the fact that she didn’t even have colitis and had experienced side effects previously.
“I now have eye inflammation, arthritis and decreased calcium in my bones,” she told me at our meeting. “Both specialists, a rheumatologist and an ophthalmologist, say it’s from all the steroids and various other drugs. I am seeing a total of six doctors! Why can’t I get better? The steroids are killing me. Still, I take them, then taper. My weight is going up and down. My old GI doctor is insisting that I have to comply and take the drugs. I tried to ask if it was endometriosis, but he’s insisting it isn’t.”
Susan was somewhat lucky; thanks to her medical background, she knew what kinds of questions to ask. Still, she was seeing so many doctors and taking so many different medications that it was tough to get a clear picture of what was going on. And her doctor had overlooked the strong possibility of endometriosis, which I began to suspect.
I carefully considered her family history: a mother with breast cancer; two aunts with endometriosis, breast cancer, colon cancer and ovarian cancer; another with uterine cancer. Susan also had six older brothers, one of whom had Crohn’s disease and another who had adult-onset diabetes mellitus and obesity. Susan herself had suffered from irritable bowel syndrome as a teenager.
Her examination was normal, save for a dark, raised round area on her neck and slight tenderness on the lower left side of her belly. Her blood tests showed borderline anemia. A repeat colonoscopy and upper endoscopy with samples of the bowel lining were completely normal. She was also tested for gluten allergy and did not have it. A review of the original rectal biopsy, when she was first hospitalized with bloody diarrhea, was consistent with an episode of infection.
These findings suggested that Crohn’s disease was unlikely to be the cause of Susan’s symptoms. Further history revealed that Susan always developed diarrhea whenever she was given the antibiotic clindamycin; not surprisingly, she had received clindamycin before dental work in the past, possibly just before the bloody diarrhea. Prior to her hysterectomy, she experienced rectal pressure, and around her menstrual period she would have diarrhea lasting up to eight days. The rectal pressure and diarrhea both resolved after surgery.
Because I really didn’t think that she had Crohn’s disease, I stopped all her medications. Off all meds, Susan reported that her diarrhea occurred up to six times per day after eating, three to four days out of the month, and was usually controlled by Imodium—a definite reduction from her previous bouts.
An abdominal CT scan was done one month after her second appointment, after all the records had been reviewed and the endoscopic procedures completed. This showed only a 2-by-2.5-centimeter round mass in the pelvis, close to the abdominal wall, the exact location where Susan felt her lower abdominal pain and where an ovarian cyst was found in the past.
Endometriosis as the cause for all her inflammatory symptoms was very unusual. Yet because Susan didn’t appear to have Crohn’s disease and was doing well off all medications, and because the CT scan showed an abnormality where Susan complained of pain, I referred her to a gynecologist who specialized in endometriosis. He performed laparoscopic surgery, which revealed a hemorrhagic ovarian cyst and scar tissue. The doctor didn’t see endometriosis, though. He thought the pain was due to the ovarian cyst and the scar tissue. He drained the ovarian cyst and cut the adhesions. Her abdominal pain improved after surgery.
However, seven months post-surgery she began to develop severe left lower abdominal pain monthly with what she thought was ovulation. The pain was accompanied by sores in her mouth and fever. She continued to develop ovarian cysts, which would rupture. She had cramping abdominal pain at other times (different from the monthly ovulation pain), which she controlled with dicyclomine hydrochloride, an antispasmodic drug.
Her gynecologist started her on Loestrin, an oral contraceptive pill, to try to suppress ovulation. However, she could “feel” ovulation and did not think it had been suppressed, even though her diarrhea decreased. To treat the irritable bowel syndrome with which she had been diagnosed as a teen, she was started on the tricyclic antidepressant desipramine, which is helpful for decreasing abdominal pain and diarrhea.
But two years later she again developed severe lower left abdominal stabbing pain and fevers. Her blood pressure spiked to 146/96, and the Loestrin was stopped. (Hormones will increase your blood pressure at times.) A pelvic and abdominal exam showed tenderness on the left side, in the area of the ovary.
Susan’s gynecologist performed yet another laparoscopy. Endometriosis was buried in the adhesions that were found. At that time, because of all her symptoms, the gynecologist removed both ovaries and tubes. Now, more than two and a half years after surgery, she has had no further abdominal pain or diarrhea. “I’m cured,” Susan told me recently. “I have begun traveling again and exercising. I eat what I want when I want. I feel like a normal human being, and I’m a mom to my children.” She thanked me for listening to her when no one else would.
If your ovaries are left at the time of surgery, endometriosis can come back. Women should discuss having their ovaries removed with their gynecologist, because doctors will often leave an ovary to prevent the menopausal symptoms that can occur after the ovaries are removed. If you have already had the children that you would like to have, removal of both ovaries may be a good option.
Why did Susan have to suffer for so long? Why was she misdiagnosed? The doctors didn’t listen. Or, if they did, their preconceived notions did not allow them to ask the right questions and think outside the box. Perhaps they weren’t knowledgeable about some of the side effects of medications, or perhaps they weren’t knowledgeable about endometriosis. Either way, Susan was treated with the wrong medications—medications that caused a substantial number of side effects.