How did you find out about the Patient Coaches Program?
(Carmen) I found out about the Patient Coaches Program because I was trying to find out more information about what having an ostomy is like and other ways to help Sophia. I wanted to gain more knowledge through books and the internet. During this search, I came across social media accounts that people had which kept others updated about how their life is going with an ostomy. I found many people on Instagram and it was nice because it was like a blog but with more benefits because I could comment and even message some ostomates for help when I was unsure what to do or just wanted to support their journey. Of the many ostomates I began to follow, I found Kristen’s Chronicles and Moniqua. Through them I began to ask questions while also seeing mentions of Patient Coaches. I started to learn more through Moniqua and then I was introduced to this community.
What do you feel you could get out of being a Patient Coach?
(Carmen)As a Patient Coach, I hope to be able to share my experience as a caregiver as well as help others from my daughter’s Crohns/Colitis story. We will be able to share what we went through step by step and hand by hand. We learned by searching all over and reading everything possible while on our own with no one to help us except doctors and nurses. However, there was a large difference between medical professionals and everyday people who live with an ostomy. My daughter and I want to share the things we have learned along with being there to support fellow patients. We are so happy to help so that others don’t have to feel like they are going through this alone.
My personal life and story as an ostomate.
(Sophia)The start of my journey was in March of 2017 which is when I first started getting sick. It started off with me losing my appetite and never being hungry or wanting to eat anything. I even began to notice something was wrong because I didn’t feel the same and I noticed that I had lost weight. Whenever I did eat food, I would soon have to go throw up because for some (previously) unknown reason I couldn’t keep it down. After a few days I started getting really bad stomach pains and it would never go away. These pains made me feel so fatigued and I didn’t want to do anything except lay down with a hot pack on my stomach and watch Netflix. After about a week we went to my pediatrician and they said that might the flu and/or a stomach bug even though my white blood cell count was really high. A few days later I woke up in the middle of the night and I went to the bathroom because I didn’t feel good and threw up and saw that there was also blood in my stool. I also had a fever so with me unable to do anything because I was so drained, my mom packed everything and we went to a larger children’s hospital. My mom had previously done research about a specialist in our area such as a pediatric GI doctor but there wasn’t one. I don’t remember too much about the first few days I was there because of how much I slept and all the medicine that was in my system but I had a colonoscopy and that was when they diagnosed me with Crohn’s.
Through the couple of rough months after that, I was in and out of the hospital a few times. Later on in June, I was really sick again since I was having way too much blood in my stool. We went to the hospital again and many of my levels were not doing well despite how I felt on the outside. I needed a few blood transfusions while also trying a new medicine. However, our hopes were turned down when the tough-earned medicine didn’t work and our final option was surgery. A second colonoscopy also confirmed that my large intestine was covered with large ulcers which is where my blood loss was coming from. It was a really hard choice to make especially since I was never given decisions as big as that before. I believed that surgery was the best choice at that point and luckily my family was there to support me throughout the whole thing. Little did I know that it would be life changing. During this whole ordeal, I ended up spending my birthday at the hospital which was on June 23 but my best friends who lived about an hour away helped my mom throw a surprise party for me which made everything so much better. Even some of the nurses, who I got to know well, made a poster to make it so much nicer. The day of my surgery was also tough because I didn’t know what to expect and it all seemed so scary. What made it harder for me to think about was that my family had planned a vacation the same time but my health got in the way which made me feel so weird. The feeling of going to sleep was a relaxing feeling that I couldn’t comprehend but when I woke up I remember being in the recovery room with many other patients. I could feel the pain and not really being able to move while drifting in and out of consciousness (due to the medicine hehe). The hardest part was probably the pain and recovery especially since it seemed like a never ending process. I went home about a week or two later where I continued to adjust along with school starting in a few weeks. My ostomy became a part of my routine and I was thankfully able to come to terms with it and how much it improved almost every aspect of my life. My mom and I had troubling time a couple times a week where we would just talk and start crying but after it was over I felt even closer to her which seemed impossible. Getting my feelings out and explaining what I was struggling with to my mom made me feel a sense of relief after. I got another scope in November and as scared as I was for the results, they came back and told us that my intestines looked almost spotless. I thought about how little pain I had in the months following be surgery and it was all because my ostomy had saved me! I felt so happy that day! My mom and I always tried finding the good in the little things and this definitely boosted our confidence. Another day I had an appointment where my doctor had cleared me for athletic activity and it was the best thing I could hear! That same day and week my school was having soccer tryouts and I really wanted to go especially since my previous season got cut short due to medical reasons. I went to try out the same day (probably not my best choice ever) and it felt so relieving. I made the team and the next few months were some of my best memories that I had had in awhile. The end of the school year was suddenly here and that meant that my surgery was in a few weeks. I was also moving to Texas so my second surgery would be in a different hospital that I hadn’t stayed at before. My second surgery was the J-pouch creation and loop ileostomy. The recovery was quicker but maintaining my weight was a struggle especially since I had an obstruction. This was during the summer (which was nicer) but my experience wasn’t that great due to my skin getting raw from repeatedly changing the bag because of leakages. Before I knew it, it was already August and time for my final surgery. Recovery was pretty easy for this as well, but I had to be careful because my J-pouch was still pretty new. To this day I still drink protein drinks and take supplements to help absorb as much as I can. Weight was hard to gain at first but it slowly went up after some time. My mom always watches what I eat so that we can see what affects my stomach and in what way (blockages etc.). One thing that has helped me greatly are iron infusions which helped many of my levels improve.
How had having an ostomy changed your everyday life?
(Sophia)My ostomy changed my life in many different ways, somer were tougher and some were for the better. I was able to eat almost every food that I wasn’t able to before but I also had to watch what I ate at the same time. For example, some food that previously caused flare ups before my ostomy were all clear to eat, but there were also some foods that commonly caused a blockage so I stayed away from those. Since I was eating more food that also meant I was getting my strength back which allowed me to join soccer again. Since I didn’t have my colon, I also needed to take extra supplements/vitamins because I didn’t absorb nutrients as easily. During school I didn’t get that many leakages but when I did my mom and I were able to act quick and do a bag change.
What is your one piece of advice you would give an ostomate?
(Sophia)One piece of advice that I would give an ostomate would be the phrase, “everything happens for a reason”. It is something that has stuck with my mom and I through this whole journey and has also helped keep us going. It especially helped us when we were in the hospital and/or going through a hard time. We also try and tell ourselves that something good is coming even though it may not be clear at that moment.