(read the following in a really fast voice) Warning: may cause anal discharge, vaginal dryness, pelvic floor prolapse, yeast infections, weight gain, more disease, and a whole bunch of other shit that is worse than the disease you currently have.
But on the commercial they are sure to put a smiling happy woman promising you your life back....right.
This post is going to be focused on all of the medications I
tried to manage my UC with. I’m going to discuss all of the side effects I
experienced, what the medication was suppose to do for me and how well it did/
(didn’t) work. Please if you are reading this because you suffer from
Ulcerative Colitis or Chron’s do not loose hope that these medication will work
for you. I read numerous stories of medications working for certain people but
not working for others. The disease is so misunderstood that taking these
medications is truly a hit or miss on whether or not they will work for certain
patients. Unfortunately although some medications would provide me with some
mild relief, none of them were able to help me get into remission. I never found
remission during the time I struggled with UC. According to all of my Docs,
remission is when you no longer have the urgency, the frequency, or the blood.
Apparently they have patients who find this with medication management…. I am
skeptical. I would also like to mention that since my surgery I have been on
absolutely no medications!!!! That is something for me, because as you are about to
read, all of these medicines changed who I was. They took away my happy. The only medication I require now is
wine. That’s because I can drink it again…. And because I no longer have
excuses to avoid hanging out with my family haha!
Here it goes. I am going to try to list the medications in
the order I tried them.
Also, it is important when reading about these medications
to understand that the underlying cause of Ulcerative Colitis is uncontrolled
inflammation. All of the medications aim to reduce the inflammation, but do so
through different routes in the body.
1. Asacol/Lialda- a 5 ASA. This medication
is supposed to reduce and control the inflammation. This is like a first line
medication, meaning it or another 5 ASA are one of the first ones a doc will
try for you. As I mentioned in a previous post this medicine gave me UC
symptoms on crack after about 2 weeks. Urgency like OMG, and I did not have
urgency before taking this medicine. Then my stools were indifferent from
urine. Needless to say, this one didn’t work for me. Also a major concern with
these medicines is kidney function. The doc will have your blood drawn about
once a month to make sure the medicine isn’t adversely affecting your kidneys.
2. Budesonide
(Entacort) - this is a
corticosteroid like prednisone, but it is supposed tonly act locally in the
colon. It is also considered one of the milder medications for UC. You can be
on this medicine for 6 months according to the books. I was on it for a year
and a half. This was actually a medicine I could sort of count on for a while.
It seemed to help a lot in the beginning. However, like everything else it slowly
stopped working. It really had no side effects, except later on in my disease
process I thought it might be contributing to some of my low grade fevers.
Because this medicine is still a steroid you still have to be on the look out
for infections. It does decrease your immune system function just like
prednisone. Also kidney function is affected by this medicine. I read a lot
about budesonide working better for Chron’s disease than UC because it is
mostly absorbed in the small bowel. After trying Uceris (which I will discuss
in a minute) I truly believe this.
3. Hyoscyamine – This is an antispasmodic.
It should help with the urgency and frequency. It never did anything for me
that I could tell. However, I also never really noticed any side effects from
this one.
4. Azathioprine (Imuran)-Blah. That’s all I can say about this one. This is an
immune suppressor and taken orally. It actually did help my UC symptoms but
here is everything else it did: Joint pain. Terrible joint pain. Fevers.
Infections!! Yeast infections, strep throat, skin infections…. Bad fatigue. My
Dr at the time I guess thought it was ok to live with all of these side effects
as long as my UC symptoms were better. Wrong. I wasn’t settling for this. Liver function is a concern with this
medication. You are tested prior to taking the medicine to make sure your body
absorbs a certain protein correctly. Don’t quote me on that. Not sure I’m right
about it being a protein, but something along those lines. Also there is a risk
of getting pancreatitis from this medicine. This always scared me. I already
freaking had colitis. Last thing I needed was pancreatitis.
5. Cimzia- A biologic. Another form of
immune suppressor. This medicine is injected subcutaneously. It is in the same
class of medications as Humira but thought to be better for pregnancy because
it does not cross the placenta. I wasn’t pregnant at the time, but it could of
happened. Also it was my understanding that this medicine would put me in
remission and be needed for the long run so I wanted to use the safest one for
pregnancy. This helped for about 4 weeks. By saying helped or worked I just
mean it reduced my symptoms. It worked for 4 weeks because the first doses are
loading doses and you can take them every 2 weeks. Then the dosing is spread to
every 4 weeks. At that point it stopped working for me. The only side effects I
experienced from this were again infections, and then extreme fatigue. For
about a week after taking my dose I slept non stop.
6. Uceris- I tried this medicine about 2
months before surgery. It was the most helpful medication I took. For about two
days I think I even had formed stools. It is a medication identical to
budesonide, but it is absorbed in the colon and therefore, works better for UC.
It helped, but didn’t get me into remission.
7.
Prednisone-
Yuck. Miserable is what this medicine eventually made me. This is a
corticosteroid that affectively reduces inflammation but causes a multitude of
other problems. Side effect from this medicine that I experienced: weight gain
(a lot of weight gain), holding water (contributes to the weight gain and makes
you feel like if someone poked your cheek you would just bust like a water
balloon), Moon face. This is from the redistribution of fat that prednisone causes.
I was always bigger in my thighs and smaller around the waist, but prednisone
changed that for the time I was on it. It moved all my fat into my love
handles. Also it shrunk my boobs. Like majorly shrunk them. I’m very glad they
are back to normal. Night Sweats without fevers. Insomnia. I could sleep about
4 hours a night. Heartburn. The worst heartburn. Cravings. I could eat anything
edible or not probably on pred. Amenorrhea (loss of your menstrual cycles). Yup
never had them. So I took a pregnancy test about once a month for 2 months
until I just accepted the fact it was the pred. I think I would have rather
been pregnant. Infections. Pred also suppresses your immune system. Yeast
infections were the main infection problem I had on pred. Racing heart rate. My
HR would be like 120 all the time, especially on high doses. Prior to being ill
my HR was always about 48, which is low, really low, but it was because I
exercised so often. High BP. Like 130s over 70s. This is really high for me.
Prior to this med my BP was always like 90s over 50s. Inability to focus.
People would talk to me and I would just say ok, because I had no idea what
they were saying. Moodiness. Wow. I could snap your head off way quicker and
wittier than I could when I was 13 going through puberty. Pred made me a true
badass, except I had no control over it. This medicine also will lower your
white blood cell count at low levels leading inexperienced physicians to
believe you do not have an infection when you probably do.
Ok ignoring all the side effects,
prednisone did reduce my frequency with UC a ton when I was on 25mg or more.
The highest dose I was on was 60 mg. Close to surgery, high doses of pred
weren’t even really helping me. But for the most part high doses took care of my
frequency. The urgency, blood., and pain however, were always extremely
intense.
8. Xifaxan- This is an antibiotic you can
take for a long period of time. There is not a generic version available yet,
so it is expensive. My surgeon put me on this prior to surgery to help me taper
off of the prednisone. It did that. I was able to get down to just 10mg before
surgery and was having about two BMs a day. It can be prescribed without the
intent of surgery and may help others. I wished I had found it sooner when I took
it. It works locally in the bowel so should not cause too many issues, but I
tried to eat yogurt while on it to avoid yeast infections.
9. JPouch Surgery- No not a medicine, but
I have to mention that I kicked Ulcerative Colitis and all these medications in
the ass by having this surgery.
Well those were the major medications I tried. Nothing ever
stopped the bleeding. For a year and a half I bled and became extremely anemic
because of it. Please don’t let this post discourage you. Medications may work
for you that didn’t work for me. Also, you may not experience all of the side
effects that I did. These affect people in different ways. I also want to point
out that these are the major medications I tried. There were also all these
other meds I would have to take to treat the side effects of these medications
(diuretics, antibiotics (lots of antibiotics), Tylenol, pepcid….) I honestly
can’t even remember all of them. I lost who I was while on these medicines, and
I am extremely glad I am able to say goodbye to all of them.
I also tried diets and a few herbs. I’ll make a separate
post about that. Chelsea Lately is on and I’ll miss it if I keep typing. I can’t
wait to get past telling you about all the suffering with UC and tell you about
how much I have been living since my JPouch Surgery. My take down step is just
6 days away!!!
Please email or comment with any questions or comments about
medications!
A reusable grocery bag with every med I was ever on.
No comments:
Post a Comment