• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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    Latest Dietary Guidelines for IBD

    Here is the most recent research into dietary modification with solid evidence.
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    Entyvio + TNFα combination therapy

    Anyone on Entyvio plus TNF blocker? We are running out of options for me. I had surgery in August and my MRE shows 2 new mildly diseased segments already! Very alarming. Fecal cal is 272. I’ve done most every drug, and started Entyvio in August 2 weeks after surgery. Not responding to it by...
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    Skyrizi (Risankizumab)

    Anyone on Skyrizi? Either in a trial or off label? I am hearing my IBD doctor friends talking about being able to get it possibly off label.
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    Who is using Curcumin for their IBD? I’ve been taking a fairly low dose, only 500mg/day. But in researching more it looks like the therapeutic dose is quadruple that amount, 2g/day. https://www.karger.com/Article/FullText/336720 I’m running out of medical options and have now been thinking...
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    Soy protein isolate

    Does anyone take soy protein? I saw this study and decided to try it: https://www.sciencedaily.com/releases/2017/04/170426130331.htm I was immediately better, like within 24 hrs! Been on it 4 days now and things have calmed way down. I use NOW Sports unflavored Soy protein isolate, blended with...
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    Carrageenan = attack

    Just another PSA - carrageenan is a nightmare!! I was halfway thru drinking an Ensure Enlive when I noticed the carrageenan on the label. I finished the drink and almost immediatley felt nasueated. Within an hour I was having D. I had bad abdominal pain for 2-3 days! Stay far away!!!
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    MRI Tips

    Hi guys, I just had an MRI (MR Enterography) yesterday and made a couple changes that were very successful. 1. Changed oral contrast from Breeza to Volumen. I had Breeza in the past but it contains sucralose which is bad for Crohn's, and a lot of sugar alcohols which cause cramping and...
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    Sleep requirements

    How much sleep does everyone need in order to function normally? I set my alarm for 8 hrs but usually my body needs 9! I wish I could function well on less like some others but I just can't.
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    Anyone dealt with drug induced neutropenia? I’ve been on high dose Remicade and Cellcept for about 6 months. Just now developed a pretty bad case of neutropenia, ANC level is 0.4. Doctor took me off Cellcept and we are rechecking a level in 2 weeks, maybe sooner. Another MD friend told me...
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    Splenda and Crohn's

    Who knew? I hope Stevia is ok. My doctor thought this study was kind of preliminary, and doesn't know if it applies to other artificial sweeteners. https://www.wellandgood.com/good-advice/splenda-might-cause-inflammation-for-crohns-disease/
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    So I developed a pretty bad aspergillus (fungal) ear infection while switching from Remicade to Stelara, combined with Cellcept. Long story short, I ended up going to the ER, doing a CT scan, and then having to see an Infectious Disease doc and she put me on Voriconazole, which is improving it...
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    Double Balloon Enteroscopy

    My IBD doc is recommending I have this done and am scheduled for it late July. It seems kind of intense. Like a colonoscopy but goes into the small intestine, and under general anesthesia which is always a risk. Has anyone had it done?? How did it go? Was it a helpful diagnostic for your case...
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    Vitamin D levels and disease activity

    Interesting video here: http://nutritionfacts.org/video/vitamin-d-for-inflammatory-bowel-disease/ What are everyone's levels? In Sept I was at 41ng/ml. The video is saying around 46ng/ml (115nmol/l) is comparable to people living in Africa where we are descended from. On some other sites it is...
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    Bone Density

    I have a great new IBD GI doc at UCSD now that has put me into remission (I think). She ordered a DEXA bone density scan based on previous steroid use. My former doctor had me on Entocort at varying doses for about 5 years. Before that I had one 4 month course of Prednisone in 1998, and lots of...
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    Insurance and the Election

    Now that we know what we are getting in the White House, I am worried. I always had insurance even before Obamacare, and just continued buying it because with Crohn's there really is no choice, no matter how expensive it is. My concern is that Trump has said Obamacare will be repealed and...
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    Stelara approved for Crohn's by FDA

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    Levsin vs belladonna

    I know these two are related but what is the difference? Is one stronger than the other? I was having pretty bad pain tonight and just took the sublingual Levsin but it did cross my mind to take the belladonna since i had it in my reserves.
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    Remicade + Cellcept

    I saw my new IBD doc today. Went very well. She is moving me from Humira to Remicade, and adding Cellcept since I don't tolerate 6MP all that well. Wish me luck! Hope i'm not a zombie like on 6MP. Has anyone taken it?? I am also doing an upper endoscopy and colonoscopy a on Sept 1st. She got...
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    Remicade most effective anti-TNF for Crohn's

    New research that compared the 3 main anti-TNF agents approved for Crohn's disease (Cimzia, Humira, Remicade) has found Remicade the most effective. http://www.ncbi.nlm.nih.gov/m/pubmed/27058635/
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    Has anyone tried INFeD? I have done 7 Venofers and they aren't taking. I saw the hematologist yesterday and she said I had been iron deprived my entire adult life, and maybe part of my childhood too (now 38) and it will take major major iron to get back to a normal level. While my insurance is...