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  1. F

    Probiotic: AKKERMANSIA MUCINIPHILA

    I searched the site but have not seen any discussion around this probiotic specific to CD. Does anyone have any insights they can share? I am currently on Entyvio and adhere to a diet that eliminates fructose, sorbitol and manitol as fodmaps that cause me symptoms. All of this has helped but...
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    Possible pill cam complications?

    Nope. I guess she isn’t worried. Anyway some relief in pain level so I will stay the course for now.
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    Possible pill cam complications?

    Don’t know yet as it takes them 1 to 2 weeks to read the results. But I will keep this in mind for next time. Thanks.
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    Possible pill cam complications?

    It was a Ct entography. the pill cam 8 weeks ago was inconclusive. They stopped recording before the pill got to the TI which is where my ulcers have always been. Hence doing another one so soon. They were trying to confirm that I am indeed in remission.
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    Possible pill cam complications?

    No, did not have an MRE. Wouldn’t the previous pill cam done only 8 weeks ago have shown any narrowing or scar tissue? Also had extensive ct scan at same time as colonoscopy in March and it showed no issues.
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    Possible pill cam complications?

    In March had a colonoscopy that showed no signs of Crohn’s so possibly in remission. Doctors wanted to do pill cam to double check as my ulcers have always been in terminal ilium so possible to miss with scope. Did pill cam in April with no issues except it didn’t get far enough to see...
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    Gas pain?

    Can anyone share what is typical Crohn’s induced gas pain? Where does it hurt? How does it hurt? How long and what starts it? What makes it better? Can Gas-X type meds help? I get pain in right rib area, especially with physical activity that will not go away. Doctors are stumped.
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    Headed to Mayo

    When I got my initial diagnosis of Crohn’s I said “no way!” because my symptoms really didn’t sound like any Crohn’s I had heard of…and to this day Crohn’s patients I know scratch their heads when I say I eat a salad most days for lunch. I actually suggested ankylosing initially but got that...
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    Headed to Mayo

    When I was in the initial throes of diagnosis 5 yrs ago, since my main pain was ribs/sternum I had several heart tests, not sure if specific to pericarditis but would think they would have noticed if that were the case. Fast forward 3 plus years and I did have recorded heart palpitations for a...
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    Headed to Mayo

    Yes, been to a couple different rheumatologist. So far their perspective has been just treat the Crohn’s because it would be the same medication without really questioning if there is indeed arthritis of any sort. Unfortunately 2 biologics in and neither resolved or improved the issue. How...
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    Headed to Mayo

    I’ve tried the local experts - Emory, Piedmont, Saint Jos, AGA, Northside. They have all been stumped. Quality of life has gone steadily down hill over the last 5 years and I need an outfit that will take a comprehensive view of the situation since piecemeal isn’t cutting it. Hence Mayo. But...
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    Headed to Mayo

    I’ve been diagnosed with CD for 5 years now due to ulcers in TI. Very atypical in that food is not an issue, no bowel issues per say except occasional constipation when a doctor tries me on a new med, and biologics have caused migraines as well as other challenges that make life miserable. My...
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    I have a headache

    Sorry for the delayed response, but no, did not have solumedrol with Stelara infusion. Started on low dose of steroids for a very short time (a week or 2 at most) as they seemed to be causing problems/pain as well so I came off which gave a very small relief. Since then - after attempting to...
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    I have a headache

    An update Bufford - after attempting to get my GI to understand the severity of the migraines/headaches with limited success I ended up back at my Neurologists and back on Nortriptyline to help manage migraine pain. I also made the decision to stop Stelara, keeping my GI in the loop. Headaches...
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    I have a headache

    I have had a headache for weeks now, every since my Stelara infusion so going on 10 weeks. My GI doesn't think it has anything to do with Stelara but seems a bit of a coincidence that it started the day after my infusion and got progressively worse/more constant. I stopped Remicade about a...
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    Buspirone as treatment for Crohn's

    If I learn more I will keep you posted.
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    Buspirone as treatment for Crohn's

    Yes, GI prescribed but not for anxiety. Currently not on treatment and pain levels are really bad. To help with pain until I can begin treatment again. Some articles if you are interested. Have to dig through but seem to suggest some upside...
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    Buspirone as treatment for Crohn's

    Does anyone here have experience with or knowledge of the use of Buspirone as a treatment for active Crohn's? I have found some older scientific/medical papers on this but nothing recent. It is an off label use of the drug and I wanted to get more information about it if there is any...
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    Newly diagnosed-input please

    Holly - have had somewhat similar experience. Very atypical in my symptoms (initially eye issues, rash on legs, pain in hips, lower back, ribs/sternum and arthritis overnight in feet/hands) but no bathroom issues. Diagnosed with Crohn's for same reason as you - ulcers in TI. I fought the...
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    Neurological issues caused by biologics

    An update to my original post: My Dr's didn't support me in the belief that remicade was causing the issues so ended up having another infusion. One day after infusion "chronic migraine" issues kicked up again to really horrible levels and I spent the next few months in pain, laying in the...
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