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  1. Grant

    Mouth/throat ulcers

    Anyone else have Crohns Ulcers that crop up in the roof of the mouth or worse still in the throat? So painful, but worse the pain seems to congregate in my head as well, as if the inflammation spreads upwards. Absolute agony. I'm currently using paracetamol & codeine & even ibuprofen gel rubbed...
  2. Grant

    Another Stricture

    DeJa Vu for me. Here we go again. Another Stricture-the absolute bane of my life. 3cm of "acute inflammation" making my life a bit unpleasant atm. Unfortunately in the past balloon dilatation has only worked for a few weeks then back to square one then surgery. Feel low & a bit depressed about...
  3. Grant

    Starting Stelara

    I've been on Inflectra for nearly 3 yrs, I went from 8 weekly to 6 weekly to 4 weekly. Unfortunately after a Sigmoidoscopy. Ultrasound & MRI my specialist has decided to stop the Inflectra & start Stelara on Thursday. Then a top up injection in about 6 weeks then 12 weekly injections...
  4. Grant

    Starting Stelara

    I've been on Inflectra for nearly 3 yrs, I went from 8 weekly to 6 weekly to 4 weekly. Unfortunately after a Sigmoidoscopy. Ultrasound & MRI my specialist has decided to stop the Inflectra & start Stelara on Thursday. Then a top up injection in about 6 weeks then 12 weekly injections...
  5. Grant

    Faecal Calprotectin

    Hi All, not posted for some well. I've been doing reasonably well on Inflectra for about a year albeit still with active rectal crohns. Sadly over the last 6 weeks or so things have not been so good & after doing some samples I'm now showing Faecal Calprotectin on a scales of about 600. Not high...
  6. Grant

    Blood Results

    A little concerned about my latest blood results which have come back with red abnormal markers. Serum alkaline phosphatase is 150. Serum creatinine is 74umol/L Haemoglobin estimation is 123 g/L Haematocrit is 0.37 L/L Mean corpusc. haemoglobin(MCH) is 26.5 pg CRP is 25. Now I've had a nasty...
  7. Grant

    Easier BM's but loads of blood

    This is weird, my BM's are much easier to pass lately(good news) but omg the blood I'm getting is horrible. In fact my Haemoglobin estimation is now @ 120 g/L. My Mean corpusc. haemoglobin(MCH) is now @ 26.9 pg. Its been going down since May last year & I'm feeling very fatigued. I've also just...
  8. Grant

    Fungus Link with Crohns

    Interesting insight into the link between fungus in the gut interacting with ecoli to possibly cause Crohns. Rgds Grant STL https://www.sciencedaily.com/releases/2016/09/160920151435.htm
  9. Grant

    Anyone on Infliximab every 4-6 weeks??

    Basically I had my 3 loading doses in the space 6 weeks, my 4th infusion is due next week & boy do I need it. The Crohns has come back with diarrohea, weight loss & generally feeling unwell. My question being is anyone getting it anything other that 8 weekly because I'm worried that the 8 weekly...
  10. Grant

    What's the average length of time on Infliximab

    I've had 2 infusions & the results are quite startling tbh. I feel very much better & now I'm wondering how long people can stay on Infliximab before the effectiveness starts to wane. Humira was about 4 yrs 7mths for me so I'm hoping that I'll be able to have effectiveness on Infliximab for @...
  11. Grant

    MRI Scan query.

    Was due to have an abdominal MRI yesterday, i was told to be there for 07.30. as I would have to drink "something" 1 1/2 hrs before the scan. So got up @ 5.45. Arrived on time. One of the nurses approaches me & is about to prepare the drink & jokes "just preparing this lovely tasty drink". I...
  12. Grant

    2 Choices

    Infliximab here I come. Humira has stopped working & I've 2 choices, Infliximab or an Ileostomy. Really feeling upbeat about Infliximab, my Specialist tells me there's a 50% chance it'll work. So I 'm going to embrace it & hope to high heaven this is going to sort me out once & for all. Rgds Grant
  13. Grant

    Pride

    Be proud, you are fighting a condition with no cure. Cancer can, if caught early be beaten. IBD cannot be cured. How we deal with it defines us, the knowledge that you’re mentally tough should be a source of pride because I know, & I’m sure you all do, other people who enjoy good health but are...
  14. Grant

    Going downhill

    Well I've been on Humira for nearly 5yrs, but suddenly it seems to have become ineffective. Basically I'm having the sort of diarrhoea that is pure liquid, several times a day & 2 or 3 times @ night. My fissure's are extremely painfull, my motions are often bloody, I'm getting terrible cramp in...
  15. Grant

    Bowel Surgery Warning for Unplanned Emergency Surgery in the UK

    This is UK based Audit & it found that 1 in 10 people who've had emergency laparotomy die within 30 days. Very worrying for obvious reasons. STL http://www.bbc.co.uk/news/health-33308262
  16. Grant

    High level of Protein in my Blood

    I had a blood test yesterday because i've got a nasty throat infection, results are back. Inflammation markers are normal but they've picked up that I've a high amount of protein in my blood. I've just looked it up & tbh I'm very worried, cancer of the blood in particular bone marrow seems to be...
  17. Grant

    NHS Infliximab use for Colitis under threat (NICE)

    I've had an email through from NACC today. "In the draft guidance, NICE does not consider these treatments to be a cost-effective use of NHS resources. - See more at: http://www.crohnsandcolitis.org.uk/w...5I87GJ,ACBNK,1 think its well worth anyone whose had some degree of success with...
  18. Grant

    Humira use within NHS under threat (NICE)

    I've had an email through from NACC today. "In the draft guidance, NICE does not consider these treatments to be a cost-effective use of NHS resources. - See more at...
  19. Grant

    Hip problem

    I had a bone density scan(been on steroids on & off for 29yrs & my spine is fine but there is potentially a problem brewing with my right hip. I've felt a pain there for a while & the scan confirmed a degradation of it. Lovely-just what I need. :thumbdown: Rgds Grant
  20. Grant

    Colonoscopy on Tuesday

    Seen two Specialists in the last week & unbelievably they've managed to get me a Colonoscopy next tuesday. I'm currently getting floods of diarrhea morning & late evening & in the night. Loperamide isn't holding it back. Not in any great pain as such, occassional twinges lower left & mid left...
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