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Confusion and Colitis

Mon, November 19, 2018 1:28 PM

Hi all,

I'm seeking input on the winding road that has led me to a pretty terrible spot today.

Here's the story in a nutshell - I slipped and pulled my SI hip joint in May and when I couldn't bear weight on it a few weeks later, was given Naproxen, an NSAID, that I took off and on for about 6 weeks. At the end of June I made a spicy chicken dish for my family and woke up with a low grade fever (101), nausea, loss of appetite, and loose stool. I went to a doctor who was confident I had either the flu or Lyme disease and put me on Cipro to "be safe". Within a day my fever skyrocketed to 104, I began vomitng and having severe diarrhea, I went to the ER, gave blood and fecal matter for testing and was sent home with more antiobiotics and a likely prognosis of C.Diff. Those antibiotics kept me in the same feverish state and I was admitted to the hospital with another day.

Then, when C. Diff was negative, I was treated for every infectious disease known to man for over a week; spinal tap for lilsteria, blood cultures and fecal cultures for E.Coli and salmonella, etc, etc... At the end of it all a GI doctor did a colonoscopy and discovered that my intestines were swiss cheese throughout. He guessed Crohn's disease but we couldn't be sure due to the damage done by all the antibiotics. I was given a large dose of Prednisone and walked out just before July 4th, feeling weird but as normal as I had in weeks. I tapered off the steroid, educated myself on NSAIDS and hoped to heal my gut on my own.

At the end of October, I'd been off the stroid for almost two months when I started feeling odd. Stress, work, diet - it all piled up. I soon found myself with loose stool and a low-grade fever that quickly turned into extremely bloody stool 10-16 x's a day and a low-grade fever. My GI doctor put me on oral Prednisone and Lialda. The blood tapered back but the frequency, and intensity remained for 14 days as I waited for an MR Enterography (showed active colitis - shocking) and another colonoscopy (showed ulcerative colitis and biopsies confirmed acute over chronic UC). The bleeding intensified after the colonoscopy and I was admitted to the hospital for IV Prednisone that immediately started to heal me. The oral drugs weren't getting absorbed. After two days of IV steroid, no blood and no fever, I was moved to oral pills and released yesterday. I woke up today to a fever, very bloody loose stool and lack of appetite.

Now my GI doctor is telling me Remicade ASAP plus Colocort enemas.....I've heard scary Remicade stories and I know once you start it you can't stop. I'm scared and nervous about all of it - does this sound familiar to anyone? Did you have something similar happen? It seems like such an extreme decision when I'm only just being diagnosed. I'm not sure what to do. I haven't even tried natural options.

Thanks for any inut on this. -S

shoffman
Joined Nov 19, 2018

Fri, November 30, 2018 2:59 PM

Reply posted for shoffman.

Inform your doctor you want to try other medications first. You have a choice to make an informed decision. Medications to try include Asacol, colossal, apriso, etc. Have an open ended discussion.

Quanny
Joined Nov 30, 2018

Mon, November 19, 2018 2:46 PM

Reply posted for shoffman.

Sounds nothing like my story but Crohn’s and Colitis affect everyone . Once you start Remicade, you can quit it anytime. But if it works, why would you?

charbs
Joined Oct 31, 2016

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