My Story

My name is Nicole and I was diagnosed with Ehlers-Danlos Syndrome in November 2012, at 19 years old.  
Since the diagnosis, my life has changed tremendously in ways I could have never imagined. 

Throughout my life I have struggled with many random health problems that seemed to have no explanation, but in November 2012, just before undergoing surgery for Endometriosis,  I discovered that I had full-thickness rectal prolapse. To actually see and feel my the end of my large intestine (rectum) outside my body was a scary moment in itself, but when I could not get it back in, I began to panic. During surgery the next day, my gynecologist brought in a general surgeon to look into the cause and severity of the issue while under anesthesia. Upon waking up, the surgeon came in to say that I appeared to have a weak, lax pelvic floor. He said it looked more like that of a much older woman who has experienced childbirth, not that of a normal 19 year old. Seeing as my 16 year old sister was already diagnosed with EDS hypermobility type, both surgeons were highly suspicious that I too had EDS. Later in November I was diagnosed with EDS as well, but I seemed to display characteristics of both hypermobility type and classic. A few days later I saw a colorectal surgeon that confirmed the diagnosis of rectal prolapse and planned to operate in the upcoming weeks. On December 13,2012 I underwent surgery to repair the prolapse. My surgeon decided to do a hand-assisted anterior resection rectopexy, saying it would produce the best outcome for both prolapse and constipation. Recovery was rough and I stayed in the hospital for 7 days following surgery. Once I returned home, my pain level slowly decreased but constipation quickly became an issue again, only weeks after undergoing a surgery that should have helped the problem. 

In January 2013, while already experiencing a great deal of abdominal pain and discomfort, I got into a car accident that totaled my car. Being only 4 weeks out of surgery, I was taken to the ER where tests revealed severe impaction, a fluid collection around my colon (near anastomosis site) and a pericardial effusion. Doctors decided not to drain either fluid collection immediately, but to wait and follow-up with my doctor later in the week. After a long follow-up cardiologist, I was admitted to the hospital to discover the cause of the pericardial effusion and decide whether or not it needed to be drained (pericardiocentesis). Doctors were not able to find a cause after 2 days in the hospital and since I was not experiencing any immediate symptoms, the effusion was not drained and I was sent home with instructions to follow-up periodically.  As for my constipation issues, I began taking many different combinations of medications and vitamins such as Amitiza, Linzess, Colace, Dulcolax, Magnesium Citrate, Magnesium, Vitamin D, Fibrecon, Metamucil, Culturelle, etc. Ultimately, the combinations of these medicines (at different times and dosages) only increased my pain and constipation. I got to the point where warm water enemas became the only way I was able to have any kind of bowel movement.

In the beginning of February 2013, I went to the ER again with severe lower right abdominal pain. Tests revealed a large ovarian cyst and I was kept overnight on Morphine to control the pain. Later the next day my pain decreased enough to be sent home with a prescription for 10/325 mg of Norco. A few days later, while in the bathroom I was devastated when I noticed my rectal prolapse had returned. At a follow-up appointment with my colorectal surgeon, he agreed that the prolapse indeed appeared to be back, but it was only mucosal (partial) at the time, not full like it was pre-surgery. He said that the recurrence rate was very low for the surgery I had and EDS may have played a larger role than he initially thought. He also said there was nothing else he could do to help relieve my pain or any explanation for the rapid decline in pelvic function after surgery. 

From February til now, my GI symptoms progressively worsened. I started pelvic floor physical therapy in late February which included two 45 minute sessions a week, but unfortunately it did not seem to improve anything. At the end of April I finally went up to Mayo Clinic in search of some answers and solutions to my problems. I had appointments with both GI and colorectal surgeon as well as an Anorectal Manometry test and MR Proctogram. Both Mayo doctors suspected Pelvic Floor Dysfunction from the beginning and the testing just confirmed their suspicion. They recommended that I come back to Mayo for their 2-week intensive biofeedback program with the hope that I would regain control of my pelvic muscles and essentially improve my symptoms. 

This past year has been a difficult journey both physically and emotionally, but I slowly learned to cope and accept my situation along the way. In the beginning, I was extremely embarrassed and reserved and did not want ANYONE to know what I was going through. I kept thinking my problems would just go away one day and I would get to live like any other normal college student, but the past few months have tested my strength many times.  Due to the daily pain, discomfort, and fatigue I experience, I have become very withdrawn from the things I once loved. I had a type A personality that kept me on-the-go 24/7 and although it took a lot of work and energy, I enjoyed working 2 jobs while going to school full time. I am slowly learning to adapt some type B traits along the way, but it is definitely a process.  

I started this blog for a few reasons but my main goal is to reach out to others who may share similar experiences. Living with any illness is hard and a strong support system, especially one that understands your struggles, is really important! My journey is far from over and as I grow more comfortable discussing GI/bowel issues, I hope to connect with others. My greatest fear right now is the possibility of losing my colon and living with an ostomy. I don't know what God has in store for me, but I know that whatever happens has a reason. I know it may feel lonely at times, but we are in this together!