• 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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    Anybody undiagnosed try LDN?

    Hi - Just wondering if any of you tried LDN? Danny tried it but only for one month ... which is not enough time. We are planning to try it again soon.
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    Dose & time

    Hi. We had our GI appointment today and the dr mentioned having Danny try LDN. (He said he had one patient that it helped and one patient that it did not impact.) Danny has tried LDN before, over 2 years ago it was prescribed by an alternate MD, and we stopped (after about 1 month) because it...
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    Is mast cell staining required to count mast cells?

    Hi .. My son had a colonoscopy last month. I had requested mast cell staining to check for mastocytic enterocolitis. The doctor thought it was a good idea and said they would do it. After the pathologist tests were completed, he told me over the phone that there were mast cells present but they...
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    Biopsies and inflammation

    Hi - I have some questions for my undiagnosed friends ... Does your GI always take biopsies when doing endoscopy and colonoscopy? (even if things look fine?) (My MIL just had hers, after years of untreated D, and he did not take any biopsies because 'everything looked fine'. I was so...
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    Colonoscopy Tuesday

    Danny will be having his second colonoscopy on Tues ... fast/prep is tomorrow. It has been 2.5 years since his last one and they never could access his TI then so hoping to learn more. We are having it done at a different hospital this time - by the pediatric "big shot" GI in NYC that others...
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    72 hour fecal fat test

    Hi undiagnosed friends, Has anyone had the 72 hour fecal fat test? Was the test helpful? I am wondering what is usually tested next if this test comes back positive. Danny is doing this now. His doctor's order was "normal diet" but I've read on lab websites that 50-100grams of fat is...
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    Rheumi thinks it is Crohn's and willing to give Humira

    Hi - Sharing an update ... because I am still a bit shocked and uncertain. (fyi - Danny is still undiagnosed after 3 years of symptoms. Most non-GI specialists think Danny has Crohn's, but GI's are not convinced. Prednisone made him feel worse) Danny saw a rheumatologist yesterday. It has been...
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    Son still undiagnosed ... and so frustrated

    son still undiagnosed ... and so frustrated Hi everyone. I feel like venting and this subforum is the best place for me since Danny is still undiagnosed! Everything that our GI tested in the last month came back 'basically normal'. ... and he ordered everything I asked for: Stool calprotectin...
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    CT and MR Imaging questions

    There seems to be a few ways of doing abdominal MR and CT imaging and I was wondering what your experiences are. Tonight my son is having a regular abdominal MRI with IV contrast. This hospital does not do the MR Enterography or MR Enteroclysis ... (I am thinking this may be too new?) Is there...
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    Multiple B12 shots? dosing?

    My son's B12 was in the normal range, but low (200's). Fatigue is his worst symptom. Thee GI gave him one B12 shot this summer and said it was enough B12 for a whole year. My son felt like he had more energy the very next day, but that was it. I've read here that some people get more frequent...
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    Has prednisone made your symptoms worse?

    Hi all, I asked this question on the regular forum when I joined but really only found the negative responses to prednisone being the normal pred side effects. When Danny first became ill, he had mouth ulcers and lots of joint pain - on top of his constant fatigue, abdominal pain, sore throat &...
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    Eosinophilic Inflammation

    My son is still undiagnosed. I was reading through his biopsy reports and his inflammation is mostly eosinophilic. Only his cecum has both neutrophilic and eosinophilic cryptitis. The colonoscopy report does not include the density of the eosinophils. I read that Crohn's disease can have...
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    Coughing up mucus and blood

    Hi - I am wondering how common it is for Crohn's patients to cough up bloody mucus? My son, Danny,coughed up bloody mucus for about 2 weeks at the end of Nov, it stopped most of December, but yesterday he coughed up bloody mucus twice. Danny says he feels like he has had a cold/cough since...
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    Hi - Was wondering if anybody tried or heard of trying oral vancomycin for Crohn's? I know it is typically used for C Diff ... and there are loads of articles on that. My son has been trying it with some success for the last 7 weeks. He is not taking it for C Diff but our GI said that there is...
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    Danny - atypical Crohn's

    Danny - atypical Crohn's / undiagnosed Hi. I am Jeanne. My 13 year old son Danny has been sick for about 2 years. He has constant fatigue, abdominal pain, sore throat; frequent diarrhea, headaches, mouth sores, reflux, eye floaters, body tempurature issues; and occasional joint pain. He has...
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    Prednisone did not help

    Hi - My name is Jeanne and my 13 yr old son, Danny, has been sick for nearly 2 years now. His symptoms are constant fatigue, constant abdominal pain, diarrhea typically 2 days a week (a few times a day). He also has some eye pressure & sees lots of floaters, joint pain (jaw, knees, ankles)...