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  1. E

    Update on my life

    Oh Emma you have really been through hell and back :( I am grateful for your updates as I think it is interesting to follow people's progress over a long period of time, particularly as so many of us are diagnosed so young. Hopefully regardless of treatment, this surgery should put you in good...
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    High Calprotectin, Negative MRI

    Hello, I am sorry to hear about your difficulties. I have had a completely normal MRI and CT scan but my colonoscopy showed inflammation and ulcers. The colonoscopy is the gold standard for showing the real picture of what is going on. I feel you will have a better idea afer this.
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    Looking for direction - just got blood results

    I would pursue the following blood tests: CRP ESR B12 (and possibly other vitamin or minerals) It sounds like you have a weakened immune system - perhaps you are deficient in something. Could you have been exposed to a virus and now experiencing post-viral fatigue? A friend of mine had this...
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    Immunomodulators may not be necessary alongside stelara

    https://www.healio.com/gastroenterology/inflammatory-bowel-disease/news/online/%7Bcc28cb13-0ad1-4b40-9d5e-ee6fa2404dae%7D/immunomodulators-not-necessary-with-long-term-stelara-therapy-in-crohns
  5. E

    5-asa medication to prevent bowel cancer

    Hi all, I have recently been reading some statistics about bowel cancer after a period of time (circa 20- 30+ years after having the disease) being quite high for both colitis and Crohn's (1 in 5 for Crohn's, will be higher in colitis). The main form of prevention which I have read that seems...
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    Options with azathioprine

    Hi all. Been on azathioprine since April 2016. For the first year I took 50mg and felt like it did nothing for me and was getting symptoms all the time. I then upped to 75mg and finally found improvement and had a good colonoscopy. I was on 75mg for 6 months when the nurse phoned and said my WBC...
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    Weight gain

    Hello, My BMI has always hovered round the 17 mark my whole life. After diagnosis I went on steroids and fortisips to gain weight and I managed to gain about 5 kilos but since stopping both of those I just slowly lose it. I don’t seem to be able to maintain my weight without regular fortisips...
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    Low WBC - azathioprine

    Hello, I started 25mg of aza in April 2016. Took that for around 3 months and then upped to 50mg. I took that until March 2017 and then upped again to 75mg. From there my WBC started slowly dropping with each monthly blood test. By September 2017 it had dropped just slightly below normal so I...
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    Bile acid sequestrants could help ileal Crohn’s

    Bile acid sequestrants could help ileal Crohn’s https://www.sciencedaily.com/releases/2017/12/171219133450.htm
  10. E

    Noninvasive test monitors mucosal healing

    https://www.prnewswire.com/news-releases/new-serum-test-is-first-to-measure-and-monitor-mucosal-healing-in-crohns-disease-300536178.html http://www.empr.com/news/prometheus-monitr-crohns-disease-test-noninvasive-assay/article/700360/
  11. E

    Lack of Mucosal Healing From Modified Specific Carbohydrate Diet in Pediatric Patients With Crohn's Disease

    http://journals.lww.com/jpgn/Abstract/2017/09000/Lack_of_Mucosal_Healing_From_Modified_Specific.10.aspx
  12. E

    Lack of Mucosal Healing From Modified Specific Carbohydrate Diet in Pediatric Patients With Crohn's Disease

    http://journals.lww.com/jpgn/Abstract/2017/09000/Lack_of_Mucosal_Healing_From_Modified_Specific.10.aspx
  13. E

    Correspondance with CC UK r.e use of biologics - thoughts?

    Hi all, the following conversation was exchanged with Crohns Colitis UK and I am wondering people's thoughts: Me: CCUK: Me: CCUK:
  14. E

    Blood tests

    I am on azathioprine and get blood tested monthly - FBC, LFT, U+E. Does anyone know if inflammation testing such as CRP and ESR would be covered in these or would the doctor have to specifically request these to be covered.
  15. E

    Fecal calproctectin yo-yo-ing

    Hello, anyone know why a fecal calproctectin test result might yo-yo? Over the past year my results have been: Aug 2015: 65 March 2016: 70 June 2016: 60 September 2016: 142 December 2016: 72 March 2017: 32 July 2017: 211 My MRI with contrast in September 2016 was normal, my colonoscopy in...
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    Ptg-200

    https://ibdnewstoday.com/2017/05/04/protagonist-to-present-preclinical-findings-on-ptg-200-for-crohns-disease-at-conference/
  17. E

    IBD nurses have phoned me twice asking me to do a blood test

    Hello, I am on azathioprine (50mg since April 2016 and upped to 75mg in March 2017). I get my bloods checked every few weeks, last time I got them checked on 11th April. I have received two calls this week now from the IBD nurse asking me how long I've been on my azathioprine, when did I start...
  18. E

    Update on my life

    I thought I would post an update. Some background about me is that I experienced terrible cramps/contractions on and off from 2006 - 2011. In 2011 I had an emergency right hemicolectomy for a perforated ileum that was misdiagnosed as appendicitis. I went from 2011-2015 unmonitored and felt...
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    Azathioprine / immune suppression and asthma

    Hi all, since being on azathioprine for my Crohn's I have noticed a worsening of my asthma. I seem to have attacks more often that are worse in nature and more difficult to get under control. Does anyone know anything about this? Thanks
  20. E

    Feeling utter despair

    Hi all, I've had Crohn's for what feels like forever, but was only officially diagnosed in January 2016. It's basically confined to my ileum. Prior to my resection, I would feel normal but then have a week here and there of intense cramping pains like labour, in the centre of my abdomen above...
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