My story is littered with complications and relapses, but also includes moments of strength and success.
My first serious illness developed around the age of 13, when my menstural cycles began. Heavy bleeding, excruciating pain, and abnormal vitals became common in my day to day life. Nearly every two weeks I was out of school due to my symptoms, and every few months I required an ER visit or hospital stay. I became well known to the school nurse and faculty due to my weekly visits. After invasive ultrasound exams and pelvic exams, it was determined I had polycystic ovarian syndrome [PCOS]. Luckily I had an incredibly compassionate GYN physician (who actually delivered me) who further went on to diagnose me with endometriosis via laparoscopy. First, he prescribed me common, daily birth control pills but they were ineffective. Next, he elevated my case and began using Depo Lupron, which put my body into a state of menopause. Although much of my pain and bleeding improved, I developed hot flashes and major mood swings that were just as debilitating. So he transferred me to Depo Provera, which I am still on. This is problematic, because long-term amenorrhea has not been fully researched; but at least my symptoms are managed.
At 15 I had my first seizure, when I blacked out while driving with a learner’s permit and smashed through a brick wall. Luckily everyone, including myself, was safe. However, it was not a classic presentation of a seizure therefore it took months of testing (and frequent unconsciousness) to receive a diagnosis. I was formally diagnosed with Juvenile Myoclonic Epilepsy [JME]. I was placed on anticonvulsants after an abnormal EEG, but I continued to have seizures – sometimes more than once a day. My worst seizure occurred at age 17 when I became unconscious and fell down a flight of stairs. The doctors placed me in a medical coma. After that hospitalization, the doctors figured out the right medication regiment for me and my seizures became less frequent, stopping all together at age 18. Although I haven’t had a seizure since then, and likely won’t because JME is usually limited to childhood and adolescence, I remain on the medication as a precaution.
Concurrent with the history of seizures, I began having severe abdominal pain and rectal bleeding around 14. A strong familial history of colon cancer elevated my case and I had a colonoscopy. It was normal so I was given a blanket diagnosis of Irritable Bowel Syndrome [IBS]. I knew it was something more though, because IBS didn’t cause bleeding. My doctors continued to dismiss me, so when I moved away to college I took the opportunity to see new physicians and get a second opinion. This gastroenterologist [GI] doctor also said it was IBS and that my flare-ups were manifestations of stress. She encouraged reducing my anxiety and eating better. I followed her instructions and ate a highly limited amount of foods, but the bleeding, diarrhea, and pain continued. At the height of my illness I was using the bathroom up to 12 times a day and experienced incontinence. I even had to complete sitz baths four times a day to treat the multiple anal fissures I developed. When I had to start wearing adult diapers to manage my symptoms, I knew I had to find someone else.
So I journeyed an hour up the road to a major medical university with terrific doctors and cutting-edge technology. I found a top GI researcher, who actually studied anthropology during undergrad (which is what I received my masters in.) It seemed like a good fit from the beginning, when he immediately validated my concerns and ordered tests I had never had before. While the process was slow, he found polyps on a colonoscopy and knew something much more intense than IBS was occurring. Although that colonoscopy did not show macrodegenerative changes of my bowel, he believed I had an Inflammatory Bowel Disease [IBD]. He decided to complete a biopsy of my colon to test me for a rare type of colitis unable to be detected by the human eye, known as “microscopic colitis”. It was a shot in the dark since almost all documented cases were in women over 50.
Sure enough, a week later, the biopsy revealed I was positive for the disease. It shocked everyone, because only 39 out of every 100,000 people have collagenous colitis – and there are only a handful of documented cases of it developing in young adults. Exact data on how many cases there are is hard to find, but anecdotally my doctor said he’s never seen it in his 25+ year career.
I am so grateful I continued searching for a doctor who had compassion and the clarity to continue finding answers. All too often young women are disregarded with their symptoms. Especially if they carry a diagnosis of mental disease – which I have several. Post-traumatic stress syndrome [PTSD], bipolar disorder, and obsessive-compulsive disorder [OCD] all manifested around a similar time. But just because I have mental issues, does not mean I could not have also be suffering from a bowel disease. My current doctor was quick to distinguish that, and separate my mental anguish from my physical symptoms. His understanding saved my life, for after I received the biopsy results I was sent for a surgical consultation.
The first week of November 2018 I met with a GI surgeon and was scheduled for life-changing surgery within two weeks. On November 13 I had a total colectomy with end ileostomy. The surgery was long and recovery was even longer, but the end result was so worth it! I no longer had terrible diarrhea or pain. The daily agony I experienced for nearly 10 years was gone.
Unfortunately the success of the surgery only lasted for about four months, before I developed high-output from the ostomy; sometimes up to eight liters a day. (A normal ostomy should only put out 1-2 liter at most.) Plus I began having severe rectal pain and bleeding again. They treated the rectal issues with daily steroid enemas. Three weeks ago I became extremely hypotensive and tachycardic. With a blood pressure barely 80/40 and a heart rate of 160, I was hospitalized. I have been admitted since for fluids and to be monitored closely. It was found that I had Adrenal Gland Insufficiency from the overuse of steroids to treat my other problems.
Update 5/2020: After a year of high ostomy output it was determined I had been suffering from C. Diff, which is a very serious bacterial infection. Since being treated with the proper antibiotics I have improved drastically. My mediport was able to be removed since I no longer suffer from severe dehydration regularly. My ostomy is functioning properly, with only ~5 empties a day. I am thriving again and finally able to enter the work force again.