The author of an article I read decided to "interview myself to help explain what it's like living with ulcerative colitis." As she was diagnosed over thirty years ago, she has lots of experience. So she wrote the article, "interviewing" herself with fifteen questions.
I liked her idea. I took her questions, removed those that didn't apply and added a few others. Although I only have ten, I hope these questions and answers will open the door a little wider for understanding what is going on with my body and maybe yours, too.
1. What is ulcerative colitis?
UC in an autoimmune disease, which I didn’t realize. In UC, the immune system
attacks the colon, causing inflammation that leads to bleeding ulcers in the
part of your digestive tract that poop goes through right before it exits the
body.
2. When were you diagnosed with ulcerative colitis?
My first symptoms were in mid-January, 2021. My first doctor visit with a
specialist (turned out to be the wrong specialist) was the beginning of March.
After several appointments through the year, the specialist decided that we
should do a colonoscopy in early December, 2021. My diagnosis, from the correct
specialist, a gastroenterologist, came mid-February of 2022. If I had gone to
the right specialist in the first place, I might have been diagnosed much
sooner.
3. What were some of your symptoms that led you to know
that something wasn’t "right" with your body?
In order, over a period of six months: mucus in bowel movement, blood in BM,
pain during BM, loose stool eventually becoming diarrhea, high frequency of
bathroom visits, urgency in having to go, pain all of the time, not being able to eat. Then
all symptoms became much worse.
4. What is a bad day like for you when experiencing a
flare-up?
Going to the bathroom because of a bowel movement more than three times a day,
diarrhea, stomach pain, and urgency to get on the toilet. Having to wear an
adult diaper to help with accidents. Blood. Acidy taste in mouth making it difficult to impossible to eat.
5. How is life different since you were diagnosed?
I am more nervous about things, overall. I am nervous about leaving the safety
of my home and the closeness of my bathroom because of the fear of having an
accident in public . . . or even while visiting a family member’s home. (It’s
hard enough having an accident at home.) I find myself more discouraged than
normal, but certainly not all the time. More when it feels like a medication is
not working. I get tired more easily, and I’m more tired in the middle of the
afternoon.
6. Are you sure you really have a chronic disease because
you "don’t look sick"?
Good, that means my medicine is working! Seriously, when you have an autoimmune
disease, your body is always attacking itself. Hopefully medicine keeps the
immune system on a low burn instead of a raging inferno. It is always there,
internally, and sometimes it will manifest itself externally. But even if I
don’t look sick, be assured that most likely, I’m not feeling great. On a scale
of one to ten, I’m probably feeling somewhere between a five and a seven.
(Seven would be a good day.)
7. What fears do you have with your colitis?
Truly my biggest fears are centered around medication. Will I be able to
find a maintenance medication that works? Once I find a medication, will it
stop working at some point? What if the only medicine that works for me has
extreme side-effects? What if there is a shortage or supply issue and I can’t
get my medicine when I need it? What if insurance suddenly denies the
medication or it costs so much even with insurance that it becomes an
unbearable drain on our finances? Some people are concerned about their colitis
turning into cancer, but colitis patients have so many colonoscopies (often
every year or every other year), I’m not worried about that at all. If it gets really bad, I could have my colon removed, but some people who have had surgery still have to take medications.
8. Why did you start a colitis blog?
My family was always asking how I was doing. Some of them wanted to know
every gritty detail, while others only wanted to know if I was feeling better
or worse. (Too much TMI!) I decided to do a blog, updating all things
about my health, medicines, and progress or lack thereof, once a month. For
those who want to know everything going on with me, they can just read the
blog’s health update. But I also realized I wanted to include one non-health,
colitis related, post every month. This required a lot more research than I
would have otherwise done, so I have learned a lot. I also found that writing
about my UC has been an excellent coping method.
9. What do you wish others specifically knew about how colitis affects you?
a. What this disease is. As already mentioned, it is an autoimmune disease, a lifelong illness. While it causes poop problems, it IS NOT
a poop disease. Changing diet, exercise habits, or doing meditation will not cure it any more than those things would cure
lupus or multiple sclerosis.
b. I feel okay most of the time. But just okay. Because of this . . .
c. I can't do what I used to do. I'm far more tired than I used to be, both mentally and physically. I can't join in all the activities that I normally would have gladly participated in before.
d. Most of the time, I do not look sick. But how I look and how I feel are two different things.
e. It is hard to be away from my own bathroom. It sounds ridicules, but it is a strong concern.
10. What advice do you offer to anyone newly diagnosed
with ulcerative colitis?
a. Don’t panic. (But it is okay to cry. There is some grieving involved.) It is
not a death sentence or even a “my life is ruined” sentence. While you’ll
probably have to change some things, a diagnosis does not mean you have to stop
everything you’re doing or give up the things you love, although it may take
time to see that.
b. Get it through your head (and your loved ones’ heads) that this is an autoimmune disease. Nothing you did caused it and there is nothing you can do to cure it. And in almost all cases, medication is needed to manage the symptoms to have a relatively normal life. A healthy diet and regular exercise may help with some of the symptoms, but they will not cure it!
c. If you haven’t already, get to a gastroenterologist as soon as possible. They are the medical professionals most familiar with this condition and its treatments.
d. UC is a weird disease because patients can have similar symptoms or completely opposite symptoms. How it affects me may not be how it affects you. You may be able to eat a food, but that same food will tear someone else’s stomach apart. A medication may work wonders for one person, but not work at all for you. You need to learn what works best for YOUR body. Give yourself time to figure it out. Then once you know, stand strong in sticking with what you know is best for YOU.
e. Because of the vast differences in the way people’s UC reacts, there is no such thing as an official UC diet, no matter what you read or are told.
f. UC medications . . . and I think autoimmune disease medications in general . . . can take weeks or even months to see if they work or not. Progress is often two inches forward, half an inch back. It can be hard for family and friends to understand, because some will wonder why you just don’t take a pill and be done with it. (Didn’t you start that medication a month ago? Why aren’t you better?)
g. Learn all you can about UC, ESPECIALLY from those who have the condition or are close to someone who has it. I’ve read some things in articles on legitimate medical websites that makes me wonder if they’ve ever even talked to someone with ulcerative colitis.
h. Some people find a support group helpful. There are not many in-person support groups for UC (you could look for IBD or general autoimmune disease support groups), but there are forums and social media groups online you could look into.
i. I've read that some people with UC go into remission so well they're able to run marathons. While I am too old for that (okay, I admit, I couldn't run a marathon even when I was a healthy 25 year old), it does give me hope for how far remission can go for some people.
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