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  1. highlandsrock

    40+ Years of Crohn's and various other annoyances.....

    My story is a little long for a post so I thought I'd write a book detailing my experiences and, hopefully, showing that you can live a fairly normal life despite various long term conditions. It covers 40+ years of being treated for Crohn’s Disease by the NHS. Well, it is finally complete and...
  2. highlandsrock

    My Crohn's Jigsaw

    I'm happy with the medications I am on and not looking to change
  3. highlandsrock

    My Crohn's Jigsaw

    Haven't actually written down who my target audience is. I'd say it is for other patients, either newly diagnosed or old hands, and medical professionals to see how the disease can affect one's QOL and how I have coped with the various novel experiences along the way. It explains how I got from...
  4. highlandsrock

    My Crohn's Jigsaw

    I don't know TBH. Can't find my last set of blood test results. I don't know what Butyrate is
  5. highlandsrock

    My Crohn's Jigsaw

    BAM - Bile Acid Malabsorption (also known as BSM - bile salt malabsorption or BAD - bile acid diarrhea) due to the removal of my terminal ileum Banding - also known as Variceal Banding and, in my case, is the placing of rubber bands around veins which have grown on the surface of my esophagus
  6. highlandsrock

    My Crohn's Jigsaw

    After the ileostomy/reversal they would usually prescribe a maintenance dose of Azathioprine. As I cannot take it I was on no Crohn's drugs at all so the answer to "what induced remission" can only be surgery!
  7. highlandsrock

    My Crohn's Jigsaw

    I have written a book about my experiences with Crohn's and its EIMs. It's called "Crohn's Disease - Wrestling The Octopus" (after the surgeon's description of my intestines in 2010) and I'm aiming to publish it in 2020. In the meantime I have condensed the story into this jigsaw diagram. I hope...
  8. highlandsrock

    Losing My Stoma

    6 years ago I was sitting in a hotel, watching the Canadian Grand Prix. It was the Simon Patient Hotel attached to St.Thomas' Hospital, ready for an early morning start to lose my stoma. The reversal wasn't completely straightforward and I fell out with my gastro. My account is written up here -...
  9. highlandsrock

    Colonoscopy - with an audience

    I had an interesting experience last Saturday. I needed a repeat colonoscopy to try and resolve a conflict between an MRI scan and a previous scoping. In order to get a quick appointment I was asked if I minded having an audience... I've found keeping a diary of these procedures really valuable...
  10. highlandsrock

    Living with IBD

    Last autumn (fall for our US cousins) I was given the chance to talk to an audience of 200 under-graduate nurses about "Living with IBD". It was the first time I had done any public speaking and, instead of finding it daunting, it was a great experience. If anyone is interested I have put a copy...
  11. highlandsrock

    Living with IBD - Talking to Nurses

    Last week I was given the opportunity to talk to 200 2nd year nurses about what it's like to live with IBD. I've never done anything like this before. I thought you might like to see how I covered my surgery and getting a stoma - https://youtu.be/31cQkssnNys I think it went OK
  12. highlandsrock

    Sticky What to expect after surgery

    I thought that after surgery my digestive system would return to normal. Wrong! IBDRelief, a UK based website, asked if I would write about my experience. I thought it might help others so here is the link - BAM - My Story
  13. highlandsrock

    Calprotectin as a predictor of a forthcoming flare

    I'm curious to know if anyone has had a calprotectin test, which showed an elevated level, even though they were feeling fine and not experiencing a flare, but then went on to flare. How long after the test was it before it became physically obvious you were flaring? I'm asking because my last...
  14. highlandsrock

    Sticky Questions for your Surgeon

    I'd add a couple of questions for your surgeon : 1) How likely is my digestive system likely to go into temporary "gastric statis" (lockdown) after surgery? 2) Can you explain about Bile Acid Malabsorption? (relevant to anyone losing their terminal ileum) I recently wrote a post which...
  15. highlandsrock

    Low platelets and Azathioprine - my test results

    I've had a low platelets issue for several years now but since I am asymptomatic ie. not bleeding profusely if I cut myself, it was decided to "park" the issue. In September 2013 I felt that we really should investigate it further so we could decide if Azathioprine would still a viable drug for...
  16. highlandsrock

    It's taken a while...but I'm finished

    I've finally got this into some sort of shape. What started as a simple blog has grown into my Crohn's Story. Consultants would often ask me "when were you first diagnosed with Crohn's?" or "what exactly did they do during that first operation?" I did some research into my medical records and...
  17. highlandsrock

    Health Freaks. Cure for Crohns or is it all in the mind?

    Did anyone in the UK see the Channel 4 programme "Health Freaks" the other night? The one that featured the lady who had "cured" her Crohn's by eating tree bark. Just wondered what you thought. There were certainly some inconsistencies but that could have been as a result of editing. The bit...
  18. highlandsrock

    Calprotectin - self testing??

    I saw a fascinating TV programme earlier this week, on the BBC, about self monitoring one's health. One guy - Larri Smarr - who is probably well known to the Crohn's cognescenti - had diagnosed himself as having Crohn's by taking 150 different readings from his body and spotting 3 that were well...
  19. highlandsrock

    My anniversary

    Yesterday (19th June) was my "first ride in an ambulance" anniversary - a wonderful gift courtesy of Crohn's. I don't remember a whole lot about the dash to Croydon General Hospital as it was in 1979 and it's only because I recently obtained copies of my old medical records that I know the date...
  20. highlandsrock

    [Submitted] Medications for maintaining remission

    I'd like to know what factors are taken into account in deciding whether or not a patient needs medication to maintain remission. (The reason I ask is that since my reversal operation 2 years ago I've not been taking any medication for Crohn's and my consultant isn't proposing that I start but...
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