Sometime around February of 2012 I started to notice things
with my “bowels” weren’t exactly normal. I probably only noticed these subtle
abnormalities because I was a third year nursing student. Although who knows,
maybe anyone, medically knowledgeable or not, would realize that
white/yellow/grey mucus in the toilet is abnormal, not to mention the gas loud
enough to be confused with a shotgun or the stomach that appears three months
pregnant after eating anything. Then the blood comes, and well, yea then you
know you need help. So those symptoms were pretty much my life from February
2012 to July 2012. I knew something was wrong and researched it a little on my
own but didn’t do anything about it. I wanted to finish the semester and learn
about everyone else’s health rather than deal with my own. I should probably
clue you in a little on how healthy I thought I was. I worked out 5 days a
week. I was a volleyball fanatic in high school and although I didn’t play college,
I never stopped exercising. I ran, I cycled, I kick boxed. I loved exercise. So
all in all, if I could do all of that I had to be healthy right?
Well in July 2012 I decided to finally see a doc about my
issues. Of course she had to scope me to be able to tell anything. O, I should
back track a bit. Before July and the Doc, I tried Gluten Free. Like many other
things I would learn, this worked…for about a week. Anyways, after seeing the Dr. I was blessed to have my first
colonoscopy experience at the age of 21. Awesome right? At this point, I was
still just trying to figure out what was going on, so I was up for anything. I
had my scope. My mom went with me. I was much healthier at this time than I
would be in the months to come. When I was waking from the anesthesia, I
remember the Dr. Saying you have “Ulcerative Colitis.” “Chron’s Disease and
Ulcerative Colitis are similar, but you have the better of the two.” She gave
me some meds, told me to see her in the office in a couple weeks. Like it was your
every day sinusitis. Take a med and poof all better. So was I worried at this
point? No. Not at all. Thought I would take this medicine for a little while
and it would all go away. Not so much.
I took the medicine which was the 5 ASA (Asacol ) for about
3 weeks. I am allergic to Sulfa, so those were not an option. At week 4 on
Asacol, holy shit (literally) did things change. I had fevers as high as 104. I
couldn’t stop going to the bathroom. It was like the symptoms I was having
previously only suddenly they were on crack and insane. My stools at this time were
no different than what the goal is when you take the colonoscopy prep,
basically urine. I should mention that before this time, I really didn’t have a
problem with urgency. I honestly didn’t even have pain. All I had was the blood
when I did go. This week, I had the urgency, I had mild pain. I thought I had
caught a stomach bug. I let this last for about 3 days. (stupid, I knew
better). Then I called the office of my Dr and let a receptionist tell me that
a stomach bug was going around. (more stupid. What are her qualifications for
answering that phone again? Right. None.) I think I was so scared I started to
listen to anyone, rather than use my education and knowledge to face what was
happening. I wanted to believe it was a stomach bug and it was all going to go
away. Finally at day 7 of this I went back to the Dr. They put me on prednisone
and I stopped the Asacol. This was my first experience with the awesome pred. I
know it is hard to read sarcasm, but if I ever say anything positive about
prednisone it is sarcastic. This drug is the furthest thing from awesome, but
it tricks you in the beginning and makes you think it’s awesome. My symptoms
went back to just the mucus and blood when I would have to go. After the 4 week
course -if you are reading this because you have UC or Chrons, I’m sure you are
familiar with the dosing regimen-
but after the 4 weeks I went back to the Dr. They tried Lialda. This is
also a 5 ASA. My symptoms returned to urgency and urine like diarrhea with high
fever. I stopped it immediately. I now had UC, an allergy to one medicine that
could treat is, and an absolutely horrible reaction to another class of
medicine that could treat it. The
reaction I was having wasn’t a true allergy, but just a bad reaction/side
effect that some people experience. I looked the meds up in my nursing drug
books, and it warns you that if you are allergic to Sulfa, you shouldn’t take 5
ASA. Guess the Docs don’t read the nursing drug guides. From this point things
just got worse. I kind of have this theory that had I never taken Asacol, maybe
I wouldn’t have had true UC. Probably just a theory, but I never had all of the
terrible symptoms before taking the medicine.
At this time, after one round of pred, and failing the 5ASAs
I was only on Budesonide. This wasn’t really doing it for me. This was from
about October 2012 to December 2012. I remember taking 6 Budesonide on
Christmas Day, because I wanted to be with my family, but you’re only supposed to
take 3. This is were I started learning how to adjust my meds and my schedule
to just “make it through the day.” At this time my Dr. wanted to put me on
Imuran. I looked up the med before agreeing and I just wasn’t ready for it. I
wanted to keep trying less harmful things. I’m not saying for sure Imuran is
harmful, but I liked nothing that I read about it. So, back to Prednisone this
time on a slower taper.
I was on Pred this time from December 2012 to March 2013. I
have some pics that will show you the horrible side effects of taking this med
for long periods, and that only shows the outer effects. Things were still
getting worse, even on prednisone.
The pain and urgency were unbelievable. Looking back, I honestly have no
idea how I got through this time. I was in my last semester of nursing school.
All I wanted to do was survive it and graduate. Forget having any fun with
friends. With this terrible disease all I had the energy for was school,
clinical, and then I would sleep like I was in a coma . I would go to clinical
and just pray I could make it through my 12 hr shift without urgency. I would
do this by avoiding any food. That’s hard to do. Also Coffee was out for me,
and I loved coffee before UC. After this round of prednisone I went on Cimzia.
This worked in the beginning. But when I say worked, I don’t mean I found
remission. I was never in remission. I mean I was able to eat some food, and
maybe go out for a few hours without urgency. UC and meds were just an up in
the air, who knows if it will work today or not kinda thing. I never had
terrible anxiety issues before UC, but I definitely developed terrible anxiety
while learning to deal with this disease.
Cimizia is a medicine like Humira, a biologic. I had to
inject the medicine myself. As a nursing student and soon to be nurse I thought
no problem. Not so much. It was hard even for me to figure out how to stab
myself with a needle and inject a pretty thick medication.
When Cimzia didn’t work, around April of 2012. My Dr. and I
discussed surgery, and I even met with a surgeon. However the surgeon was a
general surgeon and didn’t think I had tried enough medications, so he wasn’t
ready to cut into me. My Dr. then agreed with him and surgery was out. Now we
were going to try Imuran, more Pred, and Budesonide. I was on Budesonide this
whole time really. A few weeks
after taking Imuran, my colitis symptoms were getting a little better, but I
was running a fever all the time. It was always about 102. I stopped the Imuran
to try to help the fevers after talking with my Dr. over the phone. I should
mention that this time I didn’t take the pred like the Dr wanted. I was
graduating college and going on a family trip to the beach. Call me superficial
but a lot of pictures get taken at these times and prednisone doesn’t exactly
make me feel attractive. While all of this was going on, I was on a family vacation.
Being relaxed and not stressed helped my symptoms so much that week. I was
almost having formed stools by the end of the vacation and even better it was
only once a day (for about two days) However, the urgency continued to get
worse and when I had to go, I had to go.
After returning home from this vacation, I studied for my
NCLEX, Passed the NCLEX, landed my dream job, and got a new Dr. My new Dr. put
me on Uceris, which again I thought for about 2 weeks was my miracle drug. I
stayed on Cimzia through this. My symptoms rapidly got increasingly worse. BMs
were about 6 a day. I went from weighing 140 to 114 in about a week and a half.
I developed Erythema Nodosum. I had chills, fevers, and night sweats that
soaked my bed so much it would wake my fiancé up.
Finally I had my second colonoscopy and my new Dr. told my
fiancé how sick I really was. He
wouldn’t complete my scope, because my colon was so inflamed he thought he
would perforate it. I went back on Prednisone at this time and he worked with
the greatest colorectal surgeon in my city to get me in for a total colectomy
in about 4 weeks.
So this is where I am now. I had my total colectomy with
temporary Ileostomy and JPouch construction about 6.5 weeks ago. Now in 1.5
weeks I will have my reversal. At this point. I am so incredibly glad that I
had this surgery. Yea having a shit bag, as I call it, it a little abnormal,
killed my sex life for about 2 weeks, but really it just gave me my life back.
I can go places and not know where the bathroom is. I can drive and not worry
about not having an exit soon enough, and most importantly I don’t have pain.
Incredible.
The purpose of this blog is to share with others who suffer
with UC or Chrons my story. I found blogs to be the most helpful when I was researching
the JPouch surgery and medicines. This was really just a short version of my
story I wanted to have for my first post. I plan to post so many more things, like:
1. How
I also dealt with cervival dysplasia, more than likely a side effect of the
medications that suppress your immne system so much
2. More
about all of the symptoms I experienced and how UC terribly limited my life.
3. More
about all of the medications, herbals, and diets I tried before deciding on
surgery.
4. How
the people around you should approach you about your disease, or at least the
things that annoyed me so much.
5. The
surgical experience and PICTURES!!
6. Dealing
with the temporary ostomy and how I care for my little guy (I really like him, because he gave me
my life back)
7. AND
in 1.5 weeks I can share about the take down and continue to share about my
life with a working JPouch.
No comments:
Post a Comment