The Chronic Diaries: Regina G’s Ulcerative Colitis Journey
Where are you based?
A small town in Missouri (USA).
What chronic condition(s) do you have?
Ulcerative Colitis (UC). This is an autoimmune condition where your body mistakenly attacks your large intestine and rectum and can cause severe inflammation throughout them.
What symptoms did you deal with before you were diagnosed?
Frequent trips to the bathroom, stomach cramps, bleeding, nausea, throwing up, weight loss (20ish pounds in a month).
How were you diagnosed? What was your journey to diagnosis?
- I was diagnosed through an upper and lower colonoscopy with biopsies, stool samples, bloodwork.
- Diagnosis journey
I started showing signs that something was wrong in January of 2018 with the first sign being bleeding. However, I thought it was the antibiotics I was on for an infection and didn’t think anything of it. The bleeding was off and on and would get better over the next few months. Eventually it became more frequent over the summer and before I experienced some constipation off and on. I took a trip to urgent care where they did an x-ray and told me to drink miralax to relieve the constipation. From there, loose stools continued to become more frequent.
A couple of months went by before I took a trip to the ER. I was embarrassed and didn’t want to be judged, so I didn’t share all of the symptoms I was having (my own family didn’t know all of the symptoms either). I was eventually told I had a UTI, probably from the diarrhea.
I believe a couple of months went by before I went back to the ER in late August. I was throwing up, unable to eat or drink anything, and was experiencing intense stomach pain. My mom started driving me to the ER (about 35 minutes away) early in the morning but had to stop at an Ambulance Building. I started hyperventilating and couldn’t move my body, so they transported me the rest of the way. Upon arrival I was treated like a drug overdose patient based on my symptoms. After blood work and urine samples showed up negative for any drugs, they changed the way they treated me. Based on negative results, they wanted to look at my stomach and I experienced my first CT scan which didn’t show anything major.
After receiving fluids and able to move again, I was referred to a GI doctor at the age of 19. Of course, being a new patient, I had to wait a month before I could see him which resulted in a 20 lb weight loss. I was unable to leave the house except for college and maybe once every week to two weeks. I wouldn’t eat or drink anything and would just sit there and watch everyone else eat. Sometimes the smells would be triggering, and I would have to leave the restaurant. I finally met with the GI and I could tell I was one of his youngest ones he was seeing. We scheduled a colonoscopy as soon as possible because he was highly concerned with everything I was telling him.
A week later I was drinking the nastiest drink I’ve ever had with my boyfriend (now fiance) holding my hand. After waking up, I was told I had a polyp on my gallbladder that would need monitoring for a couple of years, an ulcer. I was also diagnosed with pancolitis (inflammation of the entire rectum and large intestine) which describes how much inflammation my colon had on October 11, 2018.
From there, I would take multiple trips to the GI office in a month over the next couple of months trying to get it under control. I was put on 3 medications at the start: omeprazole for the ulcer, prednisone to help with the inflammation, and APRISO (mesalamine) which is a UC medication to help control it. After 5 months of trying to get off prednisone and failing, we decided the APRISO wasn’t working and switched to a different steroid, Budesonide. About a month later towards the end of April I was starting the process of switching to a biologic, Entyvio. Currently, I’m only taking omeprazole (daily) and Entyvio once every 8 weeks. Sometime in between all of there, I added another medication for stomach spasms, called Levins, and then I was prescribed vitamin d3 and iron based on deficiency
Did this journey have an impact on your daily life?
1. There were times I wanted to drop out of college or leave in the middle of class but didn’t. I was able to get As and Bs which is not the case for every college student dealing with a chronic illness. I would spend many nights in my classes laying on the floor in pain. I would have to take medications during class time so I would have to pack food and eat during the lessons. I was working in childcare at the time and would spend many days outside in the heat (90+ degrees fahrenheit) which would make things worse.
I was also under a lot of stress and closing every night which meant I would be alone, so I wasn’t able to use the bathroom when I needed to. This was a constant struggle for me, and my boss knew about it. I pushed through it and eventually I was able to control my bowel movements more and didn’t have to worry as much.I don’t eat a whole lot now and I can’t eat certain foods like salads or peanuts and can’t drink much except for water and gatorade/powerades.
2. I don’t eat a whole lot now and I can’t eat certain foods like salads or peanuts and can’t drink much except for water and gatorade/powerades.
3. I receive accommodations in college for extra test time and testing in a private area in case I need to excuse myself to use the restroom
Are you on any medications? What side effects do you encounter, if any?
- From prednisone (steroids): Mood swings, food cravings, weight gain (30 lbs), moon-face.
2. From Entyvio (biologics): Back pain
What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?
Stomach spasms/cramping
a. I rub on my stomach or take deep breaths
b. I will drink water when I can to help or eat light meals
What occupation do you have? How does your illness effect your job/employment?
Currently I’m only a substitute teacher which has been less stressful than childcare. I’m also a full-time college student. Having the flexibility of being a substitute teacher has allowed me to balance my education and health. Ever since I’ve gotten things under control, I haven’t had problems working except trying to figure out how much I can actually do. I’m currently studying to be an Early Childhood Educator.
How does your illness impact you mentally?
Mentally, I’ve been self-conscious and don’t like going out to eat unless it’s one I go regularly because I have to order my meals to be done so that I can eat them without having symptoms appear. I also feel uncomfortable going to events that provide meals not knowing if I’ll be able to eat there so I try to eat beforehand. I did see a counsellor at my first college ( a 2 year community college) to help with my anxiety (undiagnosed- I don’t want to take any more medications). Talking to her helped a lot and I’ve been able to control my anxiety and work through any attacks that I have. Since I’ve talked with her, most of my symptoms have been relieved.
How do you keep motivated dealing with your chronic condition in your daily life?
I take it one day at a time and I always make my bed. Making my bed was something I never really did and thought about doing until I watched a video https://youtu.be/KgzLzbd-zT4. Making my bed gives me the feeling that I was able to accomplish something even if I wasn’t able to for the rest of my day. I also learned that I can’t force myself to feel positive when I’m feeling completely down but that I have to work through it. I always try to find something good about my day and when I do have a rough patch, I try not to focus on that but all the good that happened that same day.
Is there any advice you would like to give to people who are on their chronic illness journey?
My advice is to never give up even though it sounds cheesy. If you don’t like your doctor you’re seeing, request a referral and change doctors and change to someone you feel like listens to you. My gi listens to me and is a phone call away. I don’t have a good doctor/patient relationship history but with my gi, I feel comfortable talking to him and asking for medications to help with the symptoms.
Don’t push yourself either, it will cause more harm than good. Accept and welcome your chronic illness with open arms. I know that sounds easier said than done (it took me a while to do so myself) but I try to find the positives within. For example, I’m able to eat ice cream when my stomach isn’t feeling the best and will eat that for dinner because eating something is better than not eating at all (I consider it to be a superpower of mine).
And last but not least, it’s okay to cry but never forget how powerful your smile is and can be
How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?
Most people don’t understand it right away and will try to compare it to something they experienced, such as the stomach bug or the flu. I give them credit as they may share similar symptoms but unlike those, I’m stuck with it for the rest of my life.
Most people try to understand it when I first mention it, but many don’t ask questions. I do encourage questions with anyone who does ask what UC is and try to be an open book but only when they feel comfortable with it.
Is there anything you want to say to these people? Or the general public who do not have a chronic illness?
To the general public, if you know someone with a chronic illness, be mindful. The person dealing with it might not be honest with how they’re feeling when you hang out with them and will push themselves. This might make them feel tired or that they appear disinterested.
If they cancel on you, please don’t make them feel bad, they probably ran out of spoons for the day (look up the spoon theory). If you invite them to something unexpectedly and they say no, please understand that they might really want to go but they might have to plan out their week so they don’t become too exhausted.
And last but not least, chronic illnesses aren’t always visible so please don’t judge someone for parking in handicap when they look fine or for using the handicap stall.
Last words:
I’m currently 21 and only been dealing with this for almost 2 years. My life has been flipped upside down and I’m currently navigating the waters but thanks to support groups online and group chats with strangers around the world that deal with the same issues as me it’s become easier. I encourage anyone who has a chronic illness or a close friend/family member who does, reach out to support groups to gain a better understanding. I might be young, but there are patients battling UC at a much younger age. Please live your life and enjoy every moment. It’s truly the small things I’ve come to enjoy the most on my down days.
-Regina G.
Chronic Exposure Network
