The First Nine Years of My Life, I Was A Completely Healthy Child…

Hi! My name is Ayana Graves, and I’m a Jamaican-American thriving with a loop ileostomy. This did not happen overnight because life with an ileostomy is certainly not easy. I had my ileostomy surgery in the heart of the COVID-19 pandemic on June 18, 2020.  Since then, I have experienced leakages, peristomal skin breakdown, and body image issues. So, what led to me needing an ileostomy? This is my story.

The first nine years of my life, I was a completely healthy child. Then at the age of ten in the spring of 1997, I woke up with a continuous ringing in my right ear.  After two years of normal testing results, the ringing mysteriously went away for six months, but then it returned accompanied with pain. By the fall of 1999, I began having episodes of severe headaches & continuous vomiting. I remember several ER visits, but I was only given IV fluids for dehydration and sent back home.

When the results of my first brain CT scan ordered by my second ENT (Ear, Nose, Throat) specialist showed enlarged ventricles, I was diagnosed with hydrocephalus for which there is no cure and treatment requires brain surgery. In fact, I had ten brain surgeries during middle and high school for VP (ventriculoperitoneal) shunt revisions. To this day, whatever is blocking the drainage of cerebrospinal fluid (CSF) out of my brain cannot be identified; the top differential diagnosis is a tectal glioma, a very slow growing tumor.

I started losing weight rapidly in August and September 2018 as I “starved myself alive” to cope with the severe abdominal pain and rectal spasms with any oral intake. My diet consisted of only one meal a day plus 20 saltine crackers. In October of 2018, the stabbing abdominal pain became constant, hindering my ability to walk upright. Out of desperation, I turned to naturopathic medicine and then oriental medicine but neither eased my pain. The week before Thanksgiving, I was hospitalized for a third abdominal pseudocyst. I underwent my 13^th, 14^th, and 15^th brain surgeries to extract my VP shunt, receive an endoscopic third ventriculostomy (ETV), and completely remove my VP shunt, respectively, after having one for 19 years. If an ETV had been done during my childhood, it would have completely changed the trajectory of my life by preventing the need for a VA shunt! That fact infuriates and tortures me to this day.

The stabbing abdominal pain disappeared, but daily, crampy abdominal pain & other GI symptoms persisted. During the first three months of 2019, I lost 19 more pounds. In July of 2019 after my third gastroenterologist suspected I had an autonomic nervous system (ANS) disorder but could not get an appointment with a specialized neurologist until 2020 at Cleveland Clinic (CC)! I ended up going to the Florida CC campus by myself for the neurologist referral. After the ANS testing came back normal, he referred me to a motility specialist.

On August 7, 2019, I was FINALLY diagnosed with generalized intestinal dysmotility, a motility disorder, after smart pill endoscopy and pelvic floor dysfunction (PFD) after anorectal manometry. The following month I started pain management, physical therapy (PT) for PFD, and psychotherapy for worsening depression and suicidal thoughts.

In October 2019, my gallbladder was removed due to symptomatic gallstones and obstruction of my common bile duct. Thereafter, my constipation worsened to agonizing straining on the toilet to expel only a few hard lumps of stool. My continued self-starvation to cope with the severe pain led to worsening suicidal thoughts, so I received counseling and was prescribed an anti-depressant medication. The first four months of 2020 was marked by the failure of nine drug combinations to improve my constipation and the start of the COVID-19 shutdown. The results of a second smart pill endoscopy changed my diagnosis from generalized intestinal dysmotility to colonic inertia. Basically, my colon was “broken” because it would not move anything forward. I had a colorectal surgery consult in May of 2020 and on June 18, 2020, I had surgery to create Jonah, my loop ileostomy, that I plan to keep permanently.

Fast forward to November 2020 when I started taking duloxetine with amitriptyline, prescribed by my pain management specialist. I was finally able to start eating again without pain! Against all odds after fighting through open heart surgery, 5 more brain surgeries, starving myself alive due to severe pain from any oral intake every single day for 2.5 years, severe depression/suicidal thoughts, & ostomy surgery, I had been re-enrolled back into medical school, only to be dismissed almost 2 months later! I literally had only 8 months left to achieve my medical degree. I am still heartbroken to say the least! Getting an ostomy required my acceptance of having a disability that required accommodations, but that takes time. I did not fully understand that until the stress associated with being back in medical school started adversely affecting my ileostomy.

I can tell my body is not the same with an ileostomy and chronic illnesses. I get drained more easily and have to conserve my energy daily.  I continue to try to exercise regularly at the gym, started with walking and now, running on the treadmill. Due to a fear of developing a parastomal hernia esp. with weak core muscles, I did not even try to weight lift until last year in 2023. Weight lifting and strengthening continue to be a working progress for me. Still, I am so thankful for my ileostomy and modern medicine for restoring my quality of life!

Since November 2020, I have gained weight and am currently 180lbs., the heaviest I have ever been! I am on new medications that affect my hormones resulting in unwanted side effects, such as weight again. I do struggle when I look in the mirror and see the stretch marks and bulges of fat that I’ve never seen before. Sometimes, it motivates me to work out at the gym, but at other times it depresses me and causes me to “eat my feelings” with comfort sweets and salty food.

Balancing grief and gratitude continue to be a working progress for me, but that’s where self-care comes in. My body needs and deserves more rest, esp. after an ostomy pouch change. So, I rest when I can and still do the things that I enjoy, such as date nights with my husband, watching movies or experiencing new places and restaurants. My ostomy is a constant reminder of how far I have come and how much more life I get to live.