So, last week I spent the night in the ER worried that I had
a stricture. I spent almost exactly 12 hours in the waiting room- arrive 4pm
and was finally called back at 4am. When I was called back, the trauma doc who
came to see me had had UC and a temp ileostomy back in the day. I didn’t ask
specifically, but my assumption based on his wording is that he now has a
J-Pouch. He was the first person I’ve met outside of a CCFA event that had IBD
and/or experience with an ostomy. That was nice. Is it weird to want to be
besties with your ER physician because they seemed to have an inkling of what
you’re going through?
Anyway, the ER docs were really nice and decided to do a CT
scan of my abd to check for stricture. I am allergic to IV contrast dye so I
had to drink barium. Yuck. Results came back with no signs of stricture, but my
colon was “full” of stool. This was news to me as I thought I had emptied out the
day before. I was told it was constipation (no idea why really) and put on
Miralax.
Yesterday I went to see my GI for follow-up. I am not a big
fan of him because he is very old, hard of hearing, and generally unhelpful. I
already saw his partner, who is also very old and I think going senile. When
his lack of follow-up and helpfulness landed me in the hospital with multiple
fistulae and abscesses, the hospital docs insisted I go to the one I see now.
So, years later, here I am. The only saving grace is that my medical group is
attached to a teaching hospital so I usually see a “Fellow” for my appointment
and the GI himself only comes in at the end.
So, I had a nice discussion with the fellow and we agreed
that Miralax is a good course to treatment. She showed me the CT pics, I’m no
doc, but my colon did look “full.” She asked me about my narcotic pain med use-
something which could be helping to cause the C, and we agreed that the Simponi
probably isn’t working as well as it could since I am still having so much
pain. I also noted that the Fibromyalgia pain seems to be well controlled with
Cymbalta- I assume this because before the CD issues started, the Fibro was not
bothering me at all. We also discussed the need for blood work and the possible
need for another scope in the future. She did a physical exam and went to
consult with the GI.
They both came back and all he (the GI) says is that I am “paralyzing”
my gut with the pain pills and that I should stop taking them. Nothing else. It’s
my fault for using the pain meds HE gave me. Despite the fact that the last
scope HE did had significant evidence of active disease and the evidence points
to an inadequate med combo, it’s all MY fault. I didn’t even bother to
reiterate that all of this started BEFORE I was taking the pain pills with any
regularity. It actually started when I was taking a boatload of iron because I’m
severely anemic and considering pregnancy. I was (am) just so mad…and
frustrated and sad and ready to give up. I have no one I can talk to that
understands what I’m feeling and I can’t even talk to the people I do have
because I feel like they’re sick of hearing me whine.
There are no other IBD docs I can see in this medical group
and changing med groups is not an option due to my insurance. Also, I am
currently going to the med group AND hospital any other group would refer me to
in the area. I could ask for a second opinion at UCSF but you have to have a
first opinion to ask for a second. I just feel lost. And tired. And sick…you
know the rest. I’m tired of not getting
proper care/attention until I’m so sick I need to be hospitalized. I’m tired of
missing work and missing out on life. I spent yesterday trying to find other
providers and I’m just stuck. And done. If it wasn’t so painful, I’d have given
up a long time ago. Can’t even do that right…