My interview with a woman who suffers from ulcerative colitis who was bold enough to share her personal experiences with me.
Ulcerative colitis is a chronic inflammatory disease that affects the lining of the large intestine (colon) and rectum. People with this condition have tiny ulcers and small abscesses in their colon and rectum that flare up periodically and cause bloody stools and diarrhea.https://my.clevelandclinic.org/health/diseases/10351-ulcerative-colitis
This condition falls under a class of diseases identifies as inflammatory bowel diseases (IBD).
Most of the conditions I suffer from personally affect more women than men though this isn’t the case with ulcerative colitis, as this condition affects men and women equally.
This condition is chronic (life-long), though can go into remission at times.
To get a better understanding of this condition, as well as learn more about coping with chronic illness, I interviewed a long-time suffer to learn more.
- How would you describe your upbringing?
I wasn’t very close to either of my parents while I was growing up. We didn’t share a lot of real, honest dialogue. I fought often with my siblings and experienced a lot of physical and emotional abuse.
- When did you first notice that something wasn’t right?
I remember being sick often as a child. I would get so anxious about things, like attending my first day of school, Christmas Eve, or birthdays, that I would end up vomiting and be somewhat bedridden for a day or so. I had terrible depression that started when I was 15. I had suicidal idealizations, and I started drinking and smoking. I continued on that path for about 5 years. I then got sick with what my doctors thought was mono, and I missed a fair amount of my senior year of high school. Over the next 10 years of my life, I experienced sporadic gastrointestinal illnesses that were always treated as gastritis, from which I never recovered. Then in 2001, not too long after what would become known as 9/11, I suffered from severe anxiety, panic attacks, and just a fear of strangers in general. I ended up seeing my family doctor and got on anxiety medications, and I quit smoking. My serious GI symptoms began shortly thereafter. I experienced abdominal pain, cramping, and urgency. Eating became difficult as my painful symptoms would only get worse.
I went to a GP (general practitioner) when the bleeding started. I was horrified to see a full bowl of red after using the bathroom. This went on for MONTHS.
- Where you ever misdiagnosed?
I was largely ignored by my doctor and GP. My diagnosis came after crawling across the floor to a phone while in unrelenting pain and experiencing severe weakness. I called my mother and asked her to take me to an ER. My GP diagnosed me with stress and anxiety. I was given Buspar and I was told to drink a bottle of Pepto Bismol every week. I had brilliant health insurance, but no tests were ever ordered.
- What sort of support system did you have when you first got sick?
My husband, immediate family, friends, and in-laws immediately rallied and became a constant presence in and out of hospitals for the first few months.
- What sort of changes did you have to make in you daily life after your diagnosis?
For starters, I couldn’t work. Between the pain, intractable diarrhea, and blood loss, I was using every bit of strength I had to get up and shower each day. I had to carefully choose my food and beverages, strictly avoiding any fresh vegetables, fruits, nuts, seeds, or whole grains – the polar opposite of a healthy diet. I refused to make plans, or even go out in public because I was afraid of defecating in my own pants in public. I felt my safest alone at home. My husband quickly bored of being my caregiver.
- What has been the hardest thing to cope with on an emotional level?
Acknowledging that I was never going to live a normal life. This was the new normal. I was always going to be sick. I don’t always look sick, but not a minute passes in any day that I am not in fact, sick. In addition to my physical symptoms, I’m still quite depressed. I have a fair amount of self-loathing, self-depreciation, and self-doubt.
- How about a physical level?
I tire easily, and I fight constantly against dehydration. My body aches. My crazed brain never shuts off.
- What victories, if any, have you experienced while coping with this?
For one, I’m still alive. And I divorced my first husband. Then, against all odds, I met a wonderful man that is now my husband of 6 years! *
- Have you noticed any changes in yourself as a person since learning to live with this disease?
I went from being a free-spirited young adult to a micromanaging control freak trying to pull together at all the frayed ends of my life. I do nothing spontaneously anymore. I make a mental itemized list of all the pros and cons of even the most mundane tasks.
- What medications do you take daily?
I take an SSRI, anti-anxiety meds, a mood stabilizer, OTC (over the counter) gastrointestinal meds, OTC pain meds, RX NSAID, B12 and D3.
- What symptoms do you experience daily?
Fatigue, abdominal pain, joint pain, diarrhea, re-flux, anxiety, and depression.
- How has struggling with this shaped who you are today?
I really don’t know. I don’t feel like I ever had the chance to become what I was meant to be. Whatever that was, I’m not sure.
- What have you missed out on because of your illness?
I had to turn down a promotion that I wanted because I couldn’t work the hours that the position would require. I would have liked to go to college but physical and financial limitations prevented my enrollment.
- What have you gained?
Empathy definitely. I can relate to people and animals on a much more understanding level than before I was sick. Not just in regard to illness but to any challenged they may be struggling with. And a much broader medical knowledge than I would have gained without illness. I’m proactive in my healthcare and I have a low threshold for any horseplay.
- If someone was newly diagnosed with this disease – what sort of advice would you have for them?
Read about your illness from medical publications FIRST! Do not rely on the experiences of others to define your condition. Know you body and what’s happening, and then be willing to share with others and absorb information. Be our own advocate – understand what the doctors say and what they want to do, and why.