I am a 59
year old woman who has been having recurrent bouts of severe
diarrhea for over ten years. At first, it was rather like having the
24 hour stomach flu for a week, but it gradually got worse and
worse. The episodes of frequent (20 or 30 times a day), painful, and
explosive diarrhea were truly frightening and completely life
limiting. My primary care physician sent me to a gastroenterologist
who seemed to have no idea whatsoever about what was the matter with
me. His method of diagnosis was to guess that I had one condition
(ulcerative colitis, IBS, IBD, Crohns Disease, a bacterial infection
caused by the c. difficile bacteria, etc.), he would treat me for
that diagnosis du jour, and when I got no better or got worse, he
would try another diagnosis and treatment. I had blood tests until
my arms looked like I had been mainlining heroin, I took innumerable
specimens to the lab (when I could leave the house), and tried
dozens of medications, diets, stress reducing regimens, etc. etc.
While all of this was going on I was on an emotional roller-coaster
between hope and despair. About the only bright spot in all of this
was that I had a colonoscopy and was reassured that I did not have
colon cancer. The colon looked normal!
After about two years
of this, I had a spontaneous remission. I suddenly stopped being
symptomatic, stopped taking all medication and was fine for about
three years. Then suddenly the symptoms reappeared. This time I went
to a different GI specialist. She scheduled me for another
colonoscopy/biopsy on 12/20/99. This one showed no signs of
ulcerative colitis (or cancer), but the biopsy did reveal that I had
collagenous colitis. I was very lucky to find this particular GI
specialist because she had done extensive research into CC when in
medical school and she knew what to look for.
prescribed a high dose of prednisone (30mgs/day) which stopped the
diarrhea. I did, however, suffer many other side-effects since this
is by no means a benign drug. My blood pressure shot up, I had bouts
of tachycardia, I developed accute insonmia, my osteoporosis quickly
got worse, and I also developed glaucoma. These are some of the
short-term immediate effects. Long term, I can expect liver and
kidney damage. After the initial high dosage, with my doctors
supervision, I started to decrease the dosage to keep all these
side-effects to a minimum. Once I got to a certain level (about 15
mgs/day of prednisone) the diarrhea returned.
This was when
my GI doctor prescribed Lotronex even though I was not an IBS
patient. Within three and a half weeks I was having normal bowel
movements and was able to reduce the prednisone to 5 mgs/day. For
the first time in three years, I was able to get my life back and
function as a relatively normal human being. For the seven months
that I was on Lotronex I experienced no side-effects whatsoever. I
was carefully educated and monitored by both my doctor and my
pharmacist as to what to be aware of. We gradually reduced my
Lotronex dosage to 1 mg/day and I was fine.
was recalled I was devastated. I got the news at the pharmacy and
burst into tears. I had some Lotronex stockpiled and my GI doctor
gave me samples that she had left. I reduced my dosage to 1 mg/3
days thinking that that way I could make it last to maybe August.
Apparently, the dosage was too low because in March 2001 I started
with the diarrhea again and have been virtually housebound ever
since. I was so sick on the 20th of March that I had to stay home
from my grandsons 5th birthday party. I called my GI doctor and
reluctantly we started me back on high dosages of prednisone. This
time 40 mgs/day.
Meanwhile, I had myself tested for gluten
intolerance by Dr. Kenneth Fine in Texas. This test showed that I am
indeed gluten sensitive, but that I have suffered no malabsorbtion
damage to the colon YET. I have started on a gluten free diet and I
must say, that in the ten days or so that I have been on the diet I
have felt better than I have in years. My diarrhea is gone, my
stools are normal, my energy has returned and along with all that,
my zest for life. The diet is not all that difficult. I have never
been particularly fond of bread or other baked goods so that is not
a problem. I do miss pasta, though, but have hopefully found a
substitute at the Gluten Free Pantry online . Also a mayonnaise. The
things I have to watch out for are the hidden toxins like barley
malt used as a flavoring and wheat flour used as a thickening agent
in everything including mustard and canned chicken stock! More
information on living gluten free can be found at the Celiac.com
I am also taking a lactobacillus supplement called
Culturelle. This is similar to the acidophillus bacteria found in
yogurt, but is far more powerful and is easier to digest for those
with compromised colons. Culturelle "reflowers" the instinal tract
with good bacteria that have been lost by constant bouts of diarrhea
I am feeling very well. I am slowly reducing
my Prednisone dosage every week and am now down to 25 mgs/day. I
hope I can reduce it further and, maybe even dispense with it
entirely. If my symptoms return, Dr. Fine and my GI doctor here in
Eugene have other treatment alternatives to try.
life with CC/MC and it is a good one.
May 27, 2001
I am still feeling well. I am down to 20
mgs/day of Prednisone and I am still on the GF diet. I have been
working out on a neighbor's treadmill to the point where I have a
sore muscle in my leg and I have to rest it for a few days to give
it a chance to recover. Imagine that! Sore mucles from exercising!
I have heard from many of you and I always enjoy getting
your letters. Keep them coming. They keep me going!
August 14, 2001
Things have been kind of rocky of
late. I made it down to 16 mgs/day of prednisone and the symptoms
returned big time. The gluten free diet that I was so excited about
does not seem to be working on the CC/MC. This is not unusual. I am
on the gluten free diet because I tested positive for gluten
sensitivity and if I continue to eat it, I will develop full blown
Celiac Disease. It is not a cure for CC/MC. It did seem to be
helping for awhile, though. :-( Now I am on the Pepto Bismol
treatment and that has allowed me to decrease the prednisone by
another 4 mgs. I am down to 12. My goodness, this is a long drawn
out process and it does get discouraging sometimes. Even my GI
doctor just shakes her head. She and I are practicing what she calls
"T & E Medicine." Trial and Error. Sound familiar?
being one to sit around a wallow in my misery too long, I have
sniveled and whined a bit and now the big deal is the new support
group for all of us on Yahoo. I hope you will come and join. There
we can all snivel and whine together and maybe share a few laughs.
Most of all we will know we are not alone. The URL for the group is:
October 18, 2001
Lots has happened since I last
updated this page.
I left off in the middle of August when I
had gotten down to 12 mgs/day of prednisone and was trying the Pepto
Bismol treatment. That did not work for me. All it did was turn my
diarrhea black. During the last week of August, the diarrhea
returned with a vengeance. I literally could not get off the toilet
except for rare occasions when I collapsed on my bed from
exhaustion. I have never been so sick in my life. I was not only
having diarrhea, but I was lightheaded, dizzy, I had pain all over
my body, my heart raced, and my blood pressure kept going up and up.
On Sunday, the 2nd of September, I called my daughter at 7 AM and
she came rushing over. She took one look at me and told me I was
going to the Emergency Room.
That's where I ended up. They
did blood tests and urine tests and a rectal exam and then we waited
for the results. While we waited they inserted an IV in my hand in
case they needed to force fluids. The tests came back showing that I
was suffering from a urninary tract infection and severe electrolyte
imbalance due to dehydration. The interesting thing about that is
that I had been drinking lots of water while having the horrible
diarrhea. Apparently that is not a good thing to do. Water flushes
all the electrolytes out of your body and that, combined with the
diarrhea, put me in very serious shape. I should have been drinking
Gatorade or something containing a lot of sodium and especially
potassium. The Emergency Room doctor increased my prednisone back up
to 30 mgs/day and started forcing fluids orally. I did not have to
use the IV, fortunately.
My daughter brought me home and ran
to the store to buy Gatorade and any other fluid she could find that
contained potassium.orange juice and apricot nectar and peach nectar
and V-8 juice and lots of chicken broth. It took me almost a week to
recover and start feeling semi-human again.
Meanwhile, I had
talked to my GI doctor who prescribed an anti-biotic for the UTI.
Then we discussed where to go from there. Everything we had tried up
to this point had failed and the only thing that worked for me was
prednisone. It looked like I had become prednisone dependent and was
suffering from adrenal insufficiency. This is what happens when some
people take a synthetic corticosteroid (prednisone) for a long time.
The adrenal glands just stop working and will not kick in when the
prednisone is decreased. My doctor and I discussed Imuran.
Imuran is an immuno-suppressant drug used with transplant
patients to keep them from rejecting their new organ. The idea here
is that, since CC in an auto-immune disease and that my body is
treating my colon as if it were a foreign object, Imuran might
suppress this reaction and stop my immune system from, essentially,
trying to kill my gut. If that were to be true, then, once the
Imuran started to take effect, we could start to reduce the amount
of prednisone I am taking. Which is also killing me. However, since
Imuran lowers a person's resistance to infection and I already had a
urinary tract infection, we had to wait to start until that was
cleared up. I finished the antibiotic on September 15 and started
the Imuran on September 18. This is a very serious drug with its own
set of side effects, not the least of which is the potential for
causing leukemia in rare cases. I am hoping I am not one of those.
While I am on it, I am being closely monitored. Blood is being drawn
every other week to check my liver functions and my white blood cell
count. My WBC is quite high, but we think that is due to
prednisone.We are having to go slowly with this because it can take
Imuran from 4 to 6 months to reach therapeutic levels in the blood
I last saw my GI doctor on October 15 and so far, so
good. I decreased the prednisone from 25 mgs/day to 20 on the 16th.
I have not noticed any worsening of symtoms. Actually, I feel pretty
good, considering. My stools have returned to normal thanks to the
prednisone. However, I have developed the "moon-face" which is
characteristic of long-time prednisone users. My eye-sight is slowly
worsening and I know that osteoporosis is gnawing away at my bones.
We hope that I can tolerate Imuran and that it will kick in soon so
that I can reduce the prednisone further without ending up in the
hospital again from non-stop diarrhea and dehydration.
do I feel emotionally about all of this? Well, at first I was all
upset sad and angry and afraid and terribly confused. But then I got
to thinking about how things really are with this life and death
business. All we really have is now. I think of those poor people
who walked out their front doors on September 11 and went to work at
the World Trade Center and the Pentagon. And the people who got on
those planes. Just another day, right? And it wasn't. That could
happen to any of us. Not as dramatically, but just as surely. I came
to the decision that worrying about all of this is not going to
change anything except to make me sicker since stress is very bad
for what ails us. I am eventually going to die of something. That is
certain and I have no control over when or how that will happen.
What I do have control over (somewhat) is the present. I can decide
whether to spend the present fretting and fuming and stewing or to
spend it living my life. Not much of a choice, eh? So, I garden, I
play with my grandson, my son and I are going to build me some new
front steps this weekend, I go out to dinner, I read my favorite
mystery novels, and life just goes on. For now I am feeling good. I
think that is all I can ask. Like that wise old philosopher,
Scarlett O'Hara, said, "Tomorrow is another day."
Time sure flies when you're having fun!
Well, since the last time I wrote, I have been diarrhea free.
I attribute that to the fact that I have been steadily taking Imuran
(for which I have my liver functions tested once a month) and also
steadily reducing my prednisone dosage. This time, however, I
completely disregarded my GI doctor's "suggestion" and I have been
decreasing the pred at a much slower rate than she would like.
I don't know if it is the Imuran or the ridiculously slow
rate (.5 mgs every two weeks) at which I have been decreasing pred
or both.but, whatever it is, it seems to be working. I am down to
what has been, in the past, The Dose of Doom. I am at 16 mgs/day of
pred. Every time I have tried to wean myself off prednisone before,
I have always reached the 16 mg point and have had a terrible
flare-up. And for a couple of weeks preceeding. The last time I got
to 16 mgs/day, I ended up in the hospital. This time I am here and
nary a sign of symptoms. In two weeks I will be down to 15.5 mgs/day
and that will seem like a major accomplishment!
I am suffering from the Other Shoe Syndrome, however. That is
when you have felt relatively decent for awhile and you anxiously
wait for Something Bad to happen. After years of being on this
merry-go-round, it just isn't logical to expect everything to
suddenly be okay and not to wonder when all hell will break loose. I
am trying very hard to cope with that by living one day at a time.
Today I am fine and I won't worry about tomorrow until it gets here.
This is a lot easier said than done, but the little bit I have done
is a great help. Maybe as I practice more I will get better at it.
The latest item that may be of interest is the recent
approval of Entocort (budenoside) by the FDA for use in this
country. Never mind that it has been used in Canada for years.
Entocort is a corticosteroid like prednisone, but, unlike
prednisone, it supposedly has far fewer of the evil side-effects. I
have an appointment with my GI doctor on January 24 to discuss
switching. This is a toughie because I am feeling well, right now
and I do believe that if it ain't broke, don't fix it. On the other
hand, even though I am feeling well and have been diarrhea free for
four months, I know that the prednisone is busily working inside
doing who knows what to my bones and my vision is becoming a
problem. Furthermore, the Imuran is wreaking havoc with my immune
system. I can't FEEL these side effects so I imagine I am in some
kind of denial that they even exist. And, to make it even more
difficult, there is no guarantee that Entocort will do what the
combo of pred and Imuran has done for me. I do NOT want to take the
risk of switching, having it not work, and having to start all over
again with a high prednisone dosage. I really don't know at the
moment what I will decide. This is definitely Trial and Error
Medicine and I am so tired of all the errors. When I know what I am
going to do, I will post it here and we'll see how it goes. One day
at a time.
I hope that everyone out
there is taking care. If you have questions or just want to yak at
me, please feel free to write. That includes any weeping, wailing,
bitching, and moaning you may care to do. I have done plenty of that