12-17-2018, 10:06 PM   #1
Jenny41
 
Join Date: Aug 2011
Location: Herndon, Virginia
Frustrated!

Hello All,

I apologize in advance for the long post. I was admitted last October for acute pancreatitis and crohn's flare for 7 days. Discharged, had colonoscopy a week later. GI said intestines look clean which he was surprised by because CT looked horrible. Fast forward 2 weeks, admitted again with flare and C-Diff from antibiotics given during the first admission. Sent home, treated for C-Diff. A month later diagnosed with C-Diff again and treated with 3 months worth of pills. Still having pain and referred to surgeon because there was a "string like" section of intestine seen on small bowel imaging. Surgeon said area not found so nothing done. At this time, GI began to question if I really have crohn's. So now I'm dealing pain and them thinking nothing is wrong and basically dismissing me even though 2 other GI diagnosed crohn's. I guess to prove his point of no crohn's, GI decided to do a pill cam endoscopy. The study came back positive for active crohns and pill almost got stuck. This happened in August at which time the GI decided I need to restart therapy ASAP. I was admitted to the hospital again on Thanksgiving night and stayed 6 nights. I have yet to restart therapy. My sed rate was 62 and CRP 15. At discharge sed rate was 15 and CRP 1.2. Still having problems went back to E.R where they treated the pain and said could not send me home with pain meds. Sed rate 29 and CRP 2.5.

At this point I'm at my wits end! I have been dealing with this for year. I am in an active flare without therapy med or pain meds. I'm tired of going to the ER because they are not really helping! I don't know what to do at this point.
12-18-2018, 11:28 AM   #2
Scipio
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Join Date: Oct 2015
Location: San Diego

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[QUOTE=Jenny41;1015763] The study came back positive for active crohns and pill almost got stuck. This happened in August at which time the GI decided I need to restart therapy ASAP. I was admitted to the hospital again on Thanksgiving night and stayed 6 nights. I have yet to restart therapy.[QUOTE]

Why have they not yet restarted therapy for Crohn's? It doesn't make sense given what they saw on the capsule camera endoscopy.
12-19-2018, 07:30 PM   #3
Jenny41
 
Join Date: Aug 2011
Location: Herndon, Virginia
I had my first infusion of Remicade today. The time in between was spent arguing between the GI office and Infusion center on when orders were sent and received.
01-14-2019, 10:00 AM   #4
EvieBaby
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Join Date: Mar 2013
Location: Bolton, United Kingdom

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Hi Jenny,

I feel for you so much, this is almost the kind of position I'm stuck in at the moment. I've had a crohn's for many years but it has always but just about under control.

Right now I'm going through a flare up, but the hospital think my illness and problems are not crohn's related and want me to see my GP, which I have, and my GP thinks it IS crohn's related and should be dealt with by the hospital. In the mean time, I've been off work for nearly a week now feeling really poorly with pain, bleeding and bathroom issues and no-one is dong anything.

I sent an email to my IBD nurses over the weekend out of sheer desperation begging them to please help me. I went to the hospital yesterday and they told me to contact the IBD nurses Monday, which I have. They only call me back on my mobile and leave messages because I have crappy signal at home, which is why I always ask them to call the house phone. When I call them back it goes straight to answer machine and I get told to leave a message and someone will get back to me within 24 hours.

I work for the NHS I know how busy departments and Doctors are, and I know that it's not always possible to get a fast response, but when you're getting NO response and no suggestion of any investigation to get your illness under control, it isn't really acceptable.

I hope you can get some answers soon!
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