I was very active a year and a half ago! I was attending FIT camps, walking almost daily, leading Zumba classes and attending Kettle Bell classes. I went on hikes now and then and rode my bike when it wasn't windy. Then, things changed. Being active was not my guarantee against diseases or physical pains. My body started acting up and no one knows why really. I am writing this for awareness and maybe, just maybe, I'll come across someone who wants to reach out and we can support each other somehow.
Today, I deal with a kind of rare
auto immune disease called Ulcerative Colitis. It is pretty uncommon or
maybe I feel that way because when you DO have it, it's very difficult to talk
about. It's like a silent disease. It attacks all different types of people, old, young, healthy, unhealthy, fit, sedentary, overweight and thin. Who knows why. When you have UC you don't
'look' sick. You can hide it pretty well, unless you have a really
perceptive daughter in law who sees symptoms pretty quickly. My daughter
in law noticed. I was visiting their house and a few times, more than
once, I had to practically jump up from the couch and head to the bathroom.
I was only there for a few hours. She noticed that was not a normal
thing for me so when I told her about my condition, she felt that she already
knew and was not surprised.
One of the symptoms of
UC is urgency to go to the bathroom. You don't have even a minute or
second to spare sometimes. The urges can come at any moment no matter
where you are or what you are doing. They can come when you are traveling
in a car, working outside, walking around the store, or when you're a driver in
your car. It can be awful and paralyzing. You wonder if you CAN go
out and do something without having an accident. I got to the point where
I started wearing adult depends undergarments after not making it to the
bathroom in time for a BM at home. THAT was a horrific experience the
first time! I was so embarrassed and shamed and upset, even though I was alone
in my house. As I was running to the bathroom, I just started going… it
was not a great feeling. I tore off my
clothes, turned on the shower and jumped in.
I was in tears, crying and wondering how to stop this. I did not want to experience this again. I would experience it again though, quite a
few more times.. after about the second time, I decided I needed Depends, at
least until my symptoms could get under more control.
The thing about UC, this
Irritable Bowel Disease, is that there is no one path to relieving symptoms for
everyone. It’s so hard to figure
out. Medications that work for one
person don’t always work for another person.
One drug may completely change someone’s life and symptoms, and for
another that same drug won’t touch the symptoms. Doctors and Gastroenterologists are
practically ‘guessing’ which drugs to give you and which treatment plan is good
for you. I have taken 5 different drugs
and paths and I still deal with bloody bowels, urgency, gassy bloody mucus,
going to the toilet frequently at night and terrible body fatigue.
I was diagnosed in March
of 2016 after having a colonoscopy – It looked terrible! My colon was all inflamed and red in the left
side and the bleeding was BAD. My
symptoms started around Aug of 2016 with terrible gassiness and urgency, no
bleeding yet. Then around December of
2016, the bleeding started and it got really bad. By the time I saw my primary care Doc and got
a referral and appointment for a colonoscopy, it was March. Then the diagnosis and I was referred to a
Gastroenterologist in Las Vegas. I made
an appointment and I was off on a path of trying different drugs to see which
one would work for me.
The first line of
defense with this auto immune disease is steroid treatment. I was placed on Prednisone, a steroid, in
different strengths to start out and taper off FIVE times over the next
year. It would stop the bleeding,
mostly, but the drug I was taking along with the Prednisone would not work or
keep symptoms at bay unless I was taking Prednisone. Not good.
No one should be taking a steroid for long periods of time and in no way
is it a long term solution. Side effects
for me weren’t really bad.. weight gain (I have gained 15 pounds over the past
year since starting Prednisone), fatigue, water retention in my ankles and face
and neck area (puffing up with a ‘moon face’), and my teeth became super
sensitive to cold. I feel like it is
probably weakening my bones as well. I
should have a bone density test taken soon.
I took Lialda – it
didn’t touch the symptoms by itself and I was taking the highest dose
possible. I took another white tablet –
I’ll have to look it up – that my GI thought would be the end all be all for
me, it didn’t touch symptoms along with the Lialda either.
Time for the big guns –
Biologics. Things HAVE to get better!
More later –
Alaina, an Herbalife
health coach living with UC
