My IBD Story & I’m Sticking to It

Hi all!!! The blog you have been waiting for :)  

My diagnosis: 

Quick background about myself, I was born and raised in Evansville, Indiana, and moved to Pensacola Florida in 2017, so luckily, I was still at home in Indiana with my family during the next few events you are reading about. In 2004 I was 16 years old when I was diagnosed with Ulcerative Colitis (UC). I was on vacation with my family in Pensacola, FL when I kept noticing blood in my stool and I was experiencing occasional abdominal pain. A few weeks later I was in a lot of pain. I finally told my mom about the past several months of my symptoms, she took me to the ER that day and they got me in quickly with a gastroenterologist and scheduled me for a colonoscopy to take a biopsy of my large intestine. I remember the talk with the GI doctor was a lot more intense than the prepping you have to do before a scope test. He told me I may never be able to have kids with this kind of disease and told me the life it may bring. - well, he wasn’t wrong! Throughout high school, my IBD was treated at first with a medication called Asacol. With most anti-inflammatory drugs you take 2 pills three times a day and on occasion, I had flare-ups and was treated with the use of steroids. I stayed in remission for 3 years since I was diagnosed.

My journey: 

Instead of the “Freshman 15”, I lost over 25 pounds, a lot of my hair, and muscle mass due to a bad flare-up during my second semester of college in 2008. First, my doctor changed and increased my anti-inflammatory medication to Pentasa taking four pills three times a day. After that, not working then switched to trying an intense biological medication called Remicade infusions for a few months. After several hospital visits and later being admitted for a few days due to being so weak and having excessive diarrhea along with being prescribed occasional antibiotics. I was severely malnourished. I was 5’6” and weighed 114 pounds, moving in bed was hard with my hips popping out of place due to the loss of muscle mass, and trying to walk to and from the bathroom was a challenge without feeling like I was going to pass out due to having excessive diarrhea. I even remember thinking gosh I feel like a middle schooler due to the small clothes I was wearing vs what size I was used to wearing before I became sick. This flare lasted an entire year and caused a lot of stress on myself and my family, from calling into work often and even having my brother drive me to classes because I was too weak to drive. The last incident was on black Friday, my mom and her friend were out shopping, and I was not keeping anything down, every time I got up, I thought I was going to pass out, thus leading her to come home early from her shopping trips. I toughed it out as long as possible as I had a doctor's appointment in St. Jude’s Hospital with a specialist in UC in January 2009, but days after Christmas I was admitted to our local hospital.  

My Surgery & Road or Roadblock to Recovery: 

That year after Christmas I was transported in an ambulance to St. Jude’s Hospital in St. Louis, MO, a 3-hour drive. The doctor in St. Louis offered me to try a trial drug that was not even FDA approved or having surgery resulting in an ileostomy bag. I was done trying medication that made me feel worse, so I just knew having my large intestines removed with an ileostomy bag was the right choice for me and my health.  

I rang in the new year with my go-lightly drink to cleanse out my intestines to prep for surgery the next day. I was a bit anxious as this was my first big surgery. I woke up in 2009 with an ileostomy bag at the age of 20. I was devastated, but I knew at this point it was life-threatening and was necessary. My surgery was a success. Due to it being a 4-hour surgery I was not able to keep anything down and ended up staying in the hospital for 12 days. The stay was miserable, I had tubes coming out of every orifice of my body. A nasal tube was placed down my nose to suck out the digestive juices due to me throwing up. They gave me this numbing spray to use for my throat, but it does not work as you swallow you have a tube poking the back of your throat, and that numbing feeling for relief is so short-lived. I had an IV for pain medication and fluids along with a catheter. I even had a tube coming out of my bottom to drain excess fluid out for that to be empty since now it is “closed off”. Along with a Jackson-Pratt (JP) drain in my lower abdomen. A JP drain is a flexible tube with a bulb on the end that drains fluid away from your wound after surgery. The nurse came into my room a few times a day to massage the tube to help drain it, and wow, it burned. I was blessed to have my parents, Grandma and Grandpa, my Aunt Yvonne and Uncle Rick, and our Pastor there by my side when I woke up. My mom and grandma saw the worst in me come out, as I was in such a dark spot. They all understood this was very frustrating for me, but my behavior was not ok. I did apologize to the nurse taking care of me, my mom, and grandma days later as the tubes slowly started to come out. 

Recovery: 

After a few weeks of being home, an ostomy nurse came in weekly to teach me how to take care of my ostomy bag. I walked around with a pillow on my lower abdomen because of the pain from my incision. My incision was big, about 6 inches across my lower abdomen. It was not healing well, so I would have leaks around my ostomy bag, which meant bringing a change of clothes and ostomy supplies to my college classes just in case. Having an ostomy bag led me to be angry at the world and my loved ones, I was so frustrated that this disease had come this far.  I had to learn to live with a new object on my body, accepting it as a part of my body and my world. 

9 months later, after much research, I found Cleveland Clinic to be number two in gastroenterology throughout the US along with the right doctor to reverse my ostomy. This was a 2-step surgery having me, my mom, and my grandmother drive there and back twice for a 16-hour round trip. Plus being cut open two more times sounded like a lot, but I was determined to live an everyday life without my ostomy bag. My doctor in St. Louis did not approve due to how fragile and inflamed my rectum tissue was. She warned me of pouchitis, abscesses, and fistulas (a painful, abnormal pathway that forms from the inside of your anus to the skin outside).  I was determined to try and get it reversed, so I did.  

I wish I could tell you it was a beautiful change and transformation for me, I was free of medication immediately and life was great… Well, it was not, it was hell for 5 long years. I acquired pouchitis, painful abscesses, and fistulas. Painful is an understatement, excruciating pain around your ass and vagina, having them cauterize that sensitive tissue to help it heal (cauterizing the skin with silver nitrate, is a process of burning the skin for the wound to heal). I was eating anti-diarrheal medication like it was candy, taking antibiotics and anti-inflammatory medication (Pentasa), and warm sitz baths was my life. 2014 was the year I had enough with this life since I became incontinent at the age of 26; I could not hold my bowel movements, I was going to the bathroom (I did count) 30-plus times a day, and I was miserable. I would come home from being a Certified Nurse Assistant working 8-plus hour shifts to then taking naps until dinner. Then on July 4, 2014, mom and I drove back to Cleveland Clinic, and I chose to get my ileostomy bag back and I have never looked back. I also greatly appreciate my body and how resilient it is; we all need to remember we have one body, one life to live, and let's take care of it the best we can! That is through nutrition, exercise, and even positive mental health practices. 

Life today: 

I am healthy, gained my weight back, and muscle mass, and can eat almost anything. I have been medication-free for 10 years; I take Juice Plus a nutraceutical, digestive enzymes, Zinc, and allergy medicine. A few things I have struggled with since having an ileostomy bag is figuring out what pants I am comfortable in. I find high-rise leggings, underwear, and jeggings are my favorite! I wore an ostomy belt for years but got away from that. Along with bathing suits, in my 20s I could care less if people saw me in my cute two-piece bikini with my ostomy, but now I do prefer high rise or a one piece. Every now and then, after I eat, my stoma makes a gargling/fart noise which can be fun in public, as I cannot control that! I can count on one hand how many times I have had a mild blockage of my stoma from eating too many brussels sprouts. This leaves me feeling yucky and in pain for a few hours and I lay in bed with a heating pad until it passes. I can now change my bag in under 10 minutes! Where it used to be a 30-minute shit show; literally. I figured out that changing my bag first thing in the morning is best as my digestive tract is slower. I laugh because I used to eat 3 marshmallows 10 minutes before changing my bag to help slow my digestive tract down; that's a lot of marshmallows in a week since I change my bag every other day. Oh, how the ostomy nurse gives you all kinds of tips and tricks!! I could go on with many more stories, but I will leave you with this. I am so proud to share my story and inspire those that there is hope in recovery from disease. I am sorry that there is even disease in this world that comes with a lot of strife and suffering. What helped me was being around my loving family, journaling, and my faith in God.

Thanks for reading! Leave a comment if you or a loved one has Inflammatory Bowel Disease. In my next blog, I will share in detail about IBD vs. IBS and Ileostomy surgery!!! 

<3 Ashley 

Some pictures of my ostomy, stoma, and last hospital stay. :)