I’m Faith Disney and this is my story…. 

My mother is a single mom. I have 2 siblings Matt and Grace.  My brother, Matt was a paratrooper in the 82^nd Airborne Division of the United States Army but he passed away in June 2021.  That was one of the worst days of my life!  Matt was my best friend. He was always the one who talked me down during high-pressure situations. Matt would say things like; “Just listen to your doctors. I know it’s hard. Just listen to them and keep pushing! Do it for me”. He was the one who would carry me to the car in the middle of the night when had to go to the ER. Sometimes, Matt stayed home with our little sister while I was at the hospital.  

Grace, my little sister, who nicknamed me Fii, (pronounced Fee) is a swimmer and loves to ride horses. We are very close even though we have quite a few years difference in our ages. We have a pretty unique dynamic, I think. And the nickname…Let’s just say it stuck! 

My father has been absent from my life for about 13 years but, even before that, his presence was unpredictable and hostile.  We all had lots of responsibility growing up; much more than other kids our age. To some extent, it was because my mom was a single mom but also because of my failing health. It felt like we learned a lot of big life lessons and were involved in adult conversations long before they would have occurred under normal circumstances. My family never had a lot of money.  Nevertheless, we were always grateful for what we had, even if it was poor man’s spaghetti for the fourth night in a row.

 Let’s go into detail about my “failing health”.  I have a Motility Disorder, which affects both the nerves and muscles in my gut which results in “Intestinal Failure”. I have an end ileostomy which means my colon (large intestine) was removed and the end of the small intestine (ileum) was brought out of my abdomen through a small cut and stitched to the skin to form a stoma. Over time, the stitches dissolved and the stoma healed to the skin. Now my stool evacuates through the stoma into an ostomy bag taped to my body.  I have undergone 14 surgeries between 2015 and 2020. 7 of those were major: lasting longer than 7 hours.  I have endured countless other procedures as well: biopsies, lab tests, bloodwork, and hospital admissions. If I had to guess I would say we’ve been to over 100 visits for some kind of medical something. 

I struggled in school because I was diagnosed with dyslexia along with some other learning disabilities, which is challenging. I fell behind in reading and math consistently. I played football in the 5^th grade. But the following year, my health began to decline so I didn’t play again after that. In the 6^th grade, (for the second time because I was held back) my health conditions began to escalate and we barely completed the school year. In the 7^th grade, I joined a program with the school that provided instruction while home, and in-hospital care. It was designed for kids who have to miss extended classroom time due to health issues. The problem with the program was it was intended for a student who has one surgery, recovers for a month, and then returns to a normal life. A tutor visits to help with classwork assigned by teachers. So, this was not a viable option long term because I was in and out of surgery which meant extended hospital stays. Once I went 10 months without school because none of the program teachers could accommodate instruction via Zoom while I was hospitalized.  We needed flexibility but we scraped by again.

In the 8^th grade, I had a pretty good run so I played a season of lacrosse. A friend asked me to try it out. I enjoyed it. I also swam on a team with my little sister, Grace when I was just about 15 years old. I needed something to do. 

I’ve always been very athletic so anytime I had a health improvement, I was finding some kind of sport to get into.  I would stick with it as long as I was able.  In the 9^th grade (2018) I tried once again to go back to a traditional school setting. I was doing well physically and I wanted to wrestle again. I made it through about half the wrestling season and then was given the option to have my ostomy reversed. So, I gave up the rest of the season hoping to return the following year with no bag. Well…. my health declined after reversal. Once again, I missed another 10 months of school because there wasn’t a teacher who could accommodate me. We had a few great teachers but it was always short-term.  Eventually, my family and I decided I should withdraw from school in Maryland and utilize an online homeschool program offered in Pennsylvania. I completed the program and graduated right on schedule in 2021. 

When I was 17, I began learning jujitsu. This was a great sport that took me closer to my roots; wrestling. Wrestling was IT though! I started wrestling at the age of 6 and was told I had a natural talent for it. I wrestled boys, went to States every year, and I have hundreds of medals and trophies from tournaments that I am very proud of. I was the first girl ever to go to the Naval Academy wrestling program!  In 2018, only months after major surgery and sepsis I competed and placed in the Girls States. I went on to the Girls Nationals in Texas. You have to know that I was doing all of these sports with an ileostomy. Lacrosse, wrestling, Nationals, Jujitsu. I had an ileostomy for all of that. However, my health kept declining and as I got older it was hard for me to keep up with the conditioning required to wrestle, safely. One of my goals is to get back to Jujitsu after my transplant. I don’t know what I want to do with my future professionally quite yet, but if I decide, I will let everyone know. 

I want to review the timeline but keep it as brief as possible. But I also want to explain things. So, I am just going to put it out there and if you want details, I can help.  If I clarified everything this would be a novel. 

2015 – I was struggling a lot with pain. Mostly in my lower back, or flanks.  We chased kidney issues for a long time with my pediatrician because my symptoms seemed to point to kidneys. Nothing ever showed up. At one ER visit At UCMC, they admitted me and decided to perform an appendectomy.  All signs indicated my appendix was the problem I was battling. After the surgery, I experienced more constipation than before.  I did inpatient cleanouts by having an NG tube inserted and then flushing my system with medications to make me use the bathroom. This helped at first but the issue started to progress. I was transferred to UMMS in Baltimore.  After a series of testing, the medical professionals were unable to determine the cause of chronic constipation and the pain I was experiencing. It was deemed that medical indications did not explain my symptoms. They referred me to the psychiatric department at that time. We were told that this issue was all in my head; that I was imagining it. As my symptoms worsened, I decided that if no one believed me, I wanted to take my life. I attempted suicide, unsuccessfully.  We then decided to go to Hopkins for a second option. We met a GI Specialist at Hopkins who suggested an ACE procedure. (a port that is surgically placed in the abdomen so that the cleanouts could be done at home daily instead of being admitted for a week at a time to flush through an NG tube) 

January 2016 – We met with a surgeon at Hopkins to discuss the ACE procedure. He said he had a hunch about what was wrong and proposed I may have a rare motility disorder. However, there was not a doctor in MD that could test or consult on this. We would have to travel to Washington DC or Boston. We were able to get an appointment in DC with a GI specialist. The new doctor also suspected a motility disorder.  The test for it was considered experimental at the time so the next year was spent fighting with insurance to approve testing and managing symptoms the best we could. This meant that every month I would endure a week-long stay in the hospital for NG cleanouts. 

August 2017 – I was finally able to have the Colonic motility testing completed in DC.  A month later, in September, we returned to DC for my results. The test confirmed Colonic Inertia. We were given 2 options; a Cecostomy or an Ileostomy.  The medical team was certain that a cecostomy, although the logical first step, would be unsuccessful and we should opt for the ileostomy. The reason for this was because it was not just one section of my colon that was not working, the entire colon was paralyzed, therefore 100% bypass to the colon was the best option. Surgery was scheduled as soon as possible.  I was back at Hopkins in October for a loop ileostomy. The night before surgery, Hopkins and DC discussed the pain associated with my condition. The colon would spasm intermittently causing intense pain. The question remained; how do we stop it?  Hopkins met with my mom and me and suggested we opt to remove the colon altogether. It doesn’t work. It isn’t going to start working again someday and it causes extreme pain so there was no reason to keep it.

  In October I had a “near-total colectomy with ileostomy” performed. It was the first big surgery. 7 hours. It was hell. they did keep a small part of the colon intact, in hopes of a possible reconnection later down the road. 

November 2017 – I was eating well, adjusting to life with an ostomy and at 2 am, I wake up screaming in pain. My skin was grey.  I was rushed to the ER at Hopkins for an emergency surgery that lasted 8.5 hours. My bowel had perforated which caused sepsis.  Consequently, I spent a month in the hospital and I will never forget that my surgeon sat with me on Thanksgiving so my mom could take a break and get something to eat.  My mom and I trusted this doctor because he took the time to bond with me, was diligent in providing the best care for me, and listened to my explanations, and found solutions. I was relieved that he did not dismiss me as the previous doctors had.  We headed home so I could heal and adjust to the challenges of life as a teenage girl with an ileostomy. 

2018 – This was a successful year.  I went back to Hopkins for an annual check-up in October.  I had done so well for that year that the doctors wanted to attempt reconnection with the little piece of colon they left behind and get rid of the ostomy bag.  December was slated for ileostomy takedown surgery and ileorectal anastomosis.

 

January 2019 – Constipation. Pain. It felt like we went in reverse and were back at the beginning. Began bowel regimens. Started seeing a new GI for motility at CHOP in March. I very quickly declined and by March was also using NG feeds again for nutrition. CHOP tried different bowel regimens and completed ARM Study (Anorectal Manometry) and ADM Study (Antoduodenal Manometry) in April, this confirmed that my small bowel was also affected by my motility disorder. My NG feeds were failing so we switched to NJ feeds. However, this was also unsuccessful. The best option was to have an end ileostomy. Which meant the reversal was unsuccessful? This was a hard thing for me to come to terms with. I was a teenage girl and did want to live the rest of her life with an ostomy. In May we went back to Hopkins with information from CHOP. July Hopkins performed an End–Ileostomy, they also removed the small part of the colon that remained, leaving only 15 cm of the rectum. The ostomy was now permanent and I could expect to have it the rest of my life. For the remainder of 2019, there was so much discussion on what the next steps should be. I had to take a lot of infusions at home for hydration. I was still having trouble keeping up with nutrition and hydration intake, even with the ileostomy back in play. 

2020 – Still a lot of trouble leading into 2020. I couldn’t figure out why I was experiencing so much pain, especially with food intake. We also left CHOP and I started seeing a GI at Georgetown in DC. This new GI was an adult doctor but agreed to see me even though I was only 17. She brought a lot of new information to the table. Told us about a lot of different meds we could try to help me. We never made it to trial those options because I kept having surgical issues. My small intestine was twisting inside my abdomen (volvulus). This happened numerous times, sometimes requiring surgical intervention and sometimes just a hospital stay for observation while it worked itself out. Eventually, during the last surgical intervention of another volvulus, Hopkins also performed an ileopexy, in which part of the ileum near the stoma sight is attached to my abdominal wall in hopes it will prevent future twisting. 

2021 – I began the year faring well after the ileopexy but, in February I began to decline. Again. This time the breakdown was slower than in the past. From February to July, I was unable to hydrate and I was eating less and less, while the pain grew more severe. We discussed many times starting a trail of GI meds. Georgetown never felt comfortable doing this because I continued to have twisting, which corrected on its own, but the meds could have exacerbated it.  In August, we consulted with the transplant surgeon at Georgetown on the recommendation of GI. Both surgeon and GI felt that the continued declines in my intake and weight along with the increase in pain meant it was time to start talking about an Intestinal transplant. We did an NJ feeding trial in August which failed. In September, they admitted me to Georgetown to trial the NJ inpatient, it again failed. They then started me on TPN (Total Parenteral Nutrition) through a PICC line. The TPN allows me to get nutrition and fluids by bypassing my digestive system. We met again and discussed a transplant and the decision was made to start the process. In October we completed all the pre-transplant steps and I was presented to the entire transplant team as a candidate for intestinal transplant of both small and large bowel. This surgery is risky, but this has become life-threatening so I will be listed for transplant in January 2022.  

I am 18 years old now and I choose life.  I will never give up!  I will fight but COTA needs your help. My family needs COTA’s help.  I am grateful for any help that eases the burden for me and my family to recover; financially, mentally, and emotionally during this transplant. A full recovery is expected to take about 18 months to 2 years. Thanks for listening and even if the only help you can offer is prayer; please do that, because prayer will get us the help I need.