I have never participated in anything like this before, but am feeling like I could use some ideas. Over 20 years ago I was diagnosed with Crohns and underwent a resection. I did great for 15 years and then ended up on Pentasa 6 years ago. Still did okay. This January following a partial bowel obstruction, I started having daily pain, burning or discomfort from my sternum to my bellybutton. My colonoscopy and endoscopy came up clean outside of inflammation and so much narrowing at my anastomoses that the scope couldn’t go through. Also had an MRI that showed inflammation, but nothing conclusive for Crohns. My iron and red blood counts during this time have been horrendous. I’ve undergone iron infusion, so I am doing better with energy. I have been on prednisone for over a month starting at 40mg. Took 13 days to find any relief and to stop having black stools. I have since started my taper and am going to sit at 20 mg for 2 more weeks taking 5 weeks to get off the steroid. I’ve also started on Imuran (50mg) and the dr anticipates 6 months on this. We are working to get started on Humira too. I am feeling frustrated that I don’t have anything saying with certainty my Crohns is active. The dr. Says this is a best educated guess that I am in flare up. With the low RBC and iron, the pain, and inflammation along with past history, we are treating for Crohns. I continue to have inconsistent pain and burning. I believe I have started to bleed again and my jaw hurts since starting the Imuran. Shouldn’t I feel amazing after all this time on the prednisone? Should I be getting a second opinion from someone who’s not making guesses? So frustrated and unsure what to do...
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- Thread starter Jenni’s search
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I would go for a second opinion. Better to be sure.
It certainly sounds like you are in a pretty extensive flare. The MRI showed inflammation (without a biopsy many doctors won’t say crohn’s for certain), your blood tests show what is probably the result of inflammation (anemia), and there is significant scarring at your anastomoses, enough to prevent the scope from passing through. Where was your resection? Was your small intestine involved before? Black stools indicate bleeding somewhere in your small intestine, and if a flare is severe enough it takes a longer time on prednisone to make a difference, and if you were in really bad shape (on the inside) 40 mg of prednisone might not have been enough to shut the inflammation down. When I’m in a bad flare (bad enough to be hospitalized) they start me on 60 mg prednisone after IV solumedrol. Then I taper from there but really slowly. Have you told your doctors you think you’re bleeding again and that you’re still feeling pretty lousy? Did they do any inflammatory markers that they could re-test now that you’ve been on steroids for a while? Do they think any of the pain is related to the scar tissue? It can be really frustrating not to have any certainty, but it sounds like you’re taking all the right steps to get things under control again. Pentasa isn’t always sufficient as a monotherapy to control crohn’s inflammation, so you might have had inflammation for a while before your obstruction. Hopefully you and your doctors will figure out the right treatment to calm things down and let you heal.