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  1. 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 -...
  2. 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...
  3. 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...
  4. 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
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. 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...
  11. 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...
  12. highlandsrock

    Managing consultants and appointments

    Must be a male thing but I've made another list. This one is called "Managing consultants and appointments" - http://www.crohnoid.com/2013/05/managing-consultants-and-appointments.html As ever - comments welcome
  13. highlandsrock

    Tips for surviving the hospital

    For a long time I've been meaning to put together my "Top Tips for surviving in Hospital" based on my experiences over the last few years. I finally got round to it and posted it here http://www.crohnoid.com/2013/03/ten-tips-for-hospital-survival.html. I'd like to know if I've missed any...
  14. highlandsrock

    Warfarin and Crohn's

    I soon need to make the choice of whether to take Warfarin or not following the formation of a clot in my liver (which we think is as a result of a perforated bowel brought on by Crohn's). I was just wondering if anyone on the Forum, with Crohn's, is taking Warfarin and whether there are any...
  15. highlandsrock

    And the colonoscopy showed....

    Just to show it's not always bad news with Crohn's. I had a colonoscopy yesterday and it showed......nothing. Well not exactly nothing. It showed a healthy gut, right up to my anastomosis, with no signs of active Crohn's disease. A great finish to what has been a hectic year healthwise. Just...
  16. highlandsrock

    Surgery - sooner or later?

    In 1999 I was shown to have a very narrow stricture in my terminal ileum and surgery was an option. (Looking at the forum this is very common). I put off surgery for 10 years by taking Azathioprine but ended up in 2009 with fistulas and redundant loops. My innards looked like an angry octopus. I...
  17. highlandsrock

    High Dose Dexamethasone

    I've searched the forum but can only see reference to using dexamethasone as a substitute for prednisolone. Has anyone been prescribed a short, sharp, high dose of dexamethasone to try and increase their platelet count prior to an operation or procedure? If so did it : a) increase your...
  18. highlandsrock

    Transjugular biopsy - have you had one?

    Wasn't sure where to post this. On Monday I had a fibroscan which shows that I've developed liver fibrosis (as a side effect of Crohn's). My heptologist is booking me in for a transjugular liver biopsy. Has anyone had one of these? What did it involve and were you kept in hospital overnight?
  19. highlandsrock

    Assisted remission?

    Maintenance drug or not? Since my reversal operation in June 2011 I've been on no medication for Crohn's. So far it's working pretty well but I'm wondering if I should continue with no meds until I have a flare up or would I be better taking a low dose of a maintenance drug such as Azathioprine...
  20. highlandsrock

    Oesophageal varices/PVT

    I thought I'd just put a few words about this condition as in my case it is Crohn's related as you will see. Here's the background : In 1979 I had emergency surgery for suspected appendicitis which turned out to be a perforated bowel. I had already been diagnosed with Crohn's the previous year...
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