Hello all. I have never posted on these boards before; I simply use
them as a reference when Crohn's related situations arise.
My current ailment/procedure forced me to rely on Google/WebMD and the
the Crohn’s message boards on the web as I was looking for answers and
seeking peace of mind to ease my anxiety and worries. I
decided to post this because (unfortunately) most of what I read online
was disheartening (comments that were not helpful or information that
left me feeling worse). I want to share my positive experience with
as many as possible in hopes of making a difference or helping someone who may be
going through this procedure.
I am a 31 year old male. I was diagnosed with Crohns disease when I was 7 years old after
having severe stomach pain. My mother searched and demanded for
answers and finally found the right person who diagnosed me. I
have been on medication regiments throughout my life, including, but
not limited, to pentasa, prednisone and remicade. I was in
remission for nearly 10-15 years following remicade treatment.
about 5 years ago, a small hole developed above my rectum. (When I say
"above" I mean in the direction towards my back). A local CRS
diagnosed a fistula and drained it after it was causing some
infrequent discharge. He said it would need to be surgically fixed as
they rarely go away on their own. I decided not to do anything because
of fear, and let it go until recently. I didn't have any issues for years until I started Cimzia to help with
diarrhea that had been ongoing for over a year. After a few months of administering Cimzia, I
noticed some slight pain in the area of the fistula. I decided to get
it looked at because I would be traveling in the near future. I found out
that the Cimzia was trying to close the fistula, but the tunnel was
filling with fluid and bursting occasionally (some discharge in my
boxers). In other words, it was being sealed off on one end, thus
collecting and causing pressure until it erupted. I was told
eventually it could turn into an abscess and cause an infection, (and
an infection is not something to get while on Cimzia).
I am going to fast forward about a week later to where I made an
appointment to see one of the best colorectal surgeons in LA at
Cedars-Sinai hospital. I was referred to him by my Gastro because he
specializes in patients with Crohn's disease. I want everyone to know
that I made this appointment, despite all of my fears and
worries that haunted me after reading a ton of horror stories about fistulas,
setons, flaps, fistulotomys, etc. Right after being put
under anesthesia, I awoke in the recovery room groggy and out of it. He
ended up doing an EUA (Examination Under anesthesia) to see where the
fistula ended and to determine which course of action was best.
I ended up with a rubber band/tightening seton. I didn't have any pain as I
was still numb from the anesthesia.
I was able to get dressed and ride home as my wife drove.
I slept some more after getting home with a little
ice on my butt but was still numb for the most part. Hours later,
numbing wore off and I had minor throbbing but I didn't need
medication. I was able to walk around, sit and do normal activities. I
was worried about having a bowel movement and had much anxiety that
night on the toilet. The pain from my butt was not bad, but the
worry of "tearing" something triggered some anxiety (there was a bit of blood, which didn't help my anxiety).
All of which I was told was normal.
Over the next few days l, I had to wear a light pad for the drainage,
which is also normal. (I continue to wear a pad off and on for drainage,
however I give it time to breathe every once in a while because it
irritates my butt cheeks and causes a rash). I kept it clean, wore
100% cotton boxers, took some sitz baths in a clean bathtub and
overall, I was able to function normally. I used wipes and made sure
to clean as thoroughly as a could after each bowel movement.
I went on vacation about a week after the procedure and made sure I
was prepared for anything that could happen, and let me tell you I was
able to do everything I would have without the surgery. I even rode on
a horse! (It was a therapeutic horse, given to patients that had
undergone back surgery so it was very calm and didn't gallop).
I have had one tightening done thus far, and the pain was absolutely
tolerable. I did take a norco prior to the appointment, and felt some
MINOR discomfort during the tightening but I likely won't take
Norco next time as I feel I could tolerate the pain. The week after
tightening, the wound was a TAD sore, and felt like my anal area had a "pinch"
but again absolutely tolerable.
I am due for a second tightening at the end of this month and will wait for
it to fall out on its own. I hope this messages finds everyone well,
especially those who are worrying about undergoing this procedure and finding all
the worrisome posts and horror stories! It is not at all as bad as
they make it out to be!
Let me know if anyone has any questions!
them as a reference when Crohn's related situations arise.
My current ailment/procedure forced me to rely on Google/WebMD and the
the Crohn’s message boards on the web as I was looking for answers and
seeking peace of mind to ease my anxiety and worries. I
decided to post this because (unfortunately) most of what I read online
was disheartening (comments that were not helpful or information that
left me feeling worse). I want to share my positive experience with
as many as possible in hopes of making a difference or helping someone who may be
going through this procedure.
I am a 31 year old male. I was diagnosed with Crohns disease when I was 7 years old after
having severe stomach pain. My mother searched and demanded for
answers and finally found the right person who diagnosed me. I
have been on medication regiments throughout my life, including, but
not limited, to pentasa, prednisone and remicade. I was in
remission for nearly 10-15 years following remicade treatment.
about 5 years ago, a small hole developed above my rectum. (When I say
"above" I mean in the direction towards my back). A local CRS
diagnosed a fistula and drained it after it was causing some
infrequent discharge. He said it would need to be surgically fixed as
they rarely go away on their own. I decided not to do anything because
of fear, and let it go until recently. I didn't have any issues for years until I started Cimzia to help with
diarrhea that had been ongoing for over a year. After a few months of administering Cimzia, I
noticed some slight pain in the area of the fistula. I decided to get
it looked at because I would be traveling in the near future. I found out
that the Cimzia was trying to close the fistula, but the tunnel was
filling with fluid and bursting occasionally (some discharge in my
boxers). In other words, it was being sealed off on one end, thus
collecting and causing pressure until it erupted. I was told
eventually it could turn into an abscess and cause an infection, (and
an infection is not something to get while on Cimzia).
I am going to fast forward about a week later to where I made an
appointment to see one of the best colorectal surgeons in LA at
Cedars-Sinai hospital. I was referred to him by my Gastro because he
specializes in patients with Crohn's disease. I want everyone to know
that I made this appointment, despite all of my fears and
worries that haunted me after reading a ton of horror stories about fistulas,
setons, flaps, fistulotomys, etc. Right after being put
under anesthesia, I awoke in the recovery room groggy and out of it. He
ended up doing an EUA (Examination Under anesthesia) to see where the
fistula ended and to determine which course of action was best.
I ended up with a rubber band/tightening seton. I didn't have any pain as I
was still numb from the anesthesia.
I was able to get dressed and ride home as my wife drove.
I slept some more after getting home with a little
ice on my butt but was still numb for the most part. Hours later,
numbing wore off and I had minor throbbing but I didn't need
medication. I was able to walk around, sit and do normal activities. I
was worried about having a bowel movement and had much anxiety that
night on the toilet. The pain from my butt was not bad, but the
worry of "tearing" something triggered some anxiety (there was a bit of blood, which didn't help my anxiety).
All of which I was told was normal.
Over the next few days l, I had to wear a light pad for the drainage,
which is also normal. (I continue to wear a pad off and on for drainage,
however I give it time to breathe every once in a while because it
irritates my butt cheeks and causes a rash). I kept it clean, wore
100% cotton boxers, took some sitz baths in a clean bathtub and
overall, I was able to function normally. I used wipes and made sure
to clean as thoroughly as a could after each bowel movement.
I went on vacation about a week after the procedure and made sure I
was prepared for anything that could happen, and let me tell you I was
able to do everything I would have without the surgery. I even rode on
a horse! (It was a therapeutic horse, given to patients that had
undergone back surgery so it was very calm and didn't gallop).
I have had one tightening done thus far, and the pain was absolutely
tolerable. I did take a norco prior to the appointment, and felt some
MINOR discomfort during the tightening but I likely won't take
Norco next time as I feel I could tolerate the pain. The week after
tightening, the wound was a TAD sore, and felt like my anal area had a "pinch"
but again absolutely tolerable.
I am due for a second tightening at the end of this month and will wait for
it to fall out on its own. I hope this messages finds everyone well,
especially those who are worrying about undergoing this procedure and finding all
the worrisome posts and horror stories! It is not at all as bad as
they make it out to be!
Let me know if anyone has any questions!
