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My goodness Grant reading your signature you have certainly been operated on a few times over the last 30 years! I always find it really interesting to hear from people who have had the disease that length of time as sometimes I get worried about dying young. My partner is a social worker and...

He had cancer, not Crohn's.

Gah that’s what I take but I’m 30. Here’s to hoping there’s something else that doesn’t compromise the immune system available in 20 years time!

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

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...

Somerthing I found online: Methotrexate-related ocular toxicities consist of peri-orbital edema, ocular pain, blurred vision, photophobia, conjunctivitis, blepharitis, decreased reflex tear secretion and non-arteritic ischemic optic neuropathy. The optic neuropathy has been linked to folate...

Hi Lynda. I have been on azathioprine since April 2016. It generally works for me but I have problems with my white blood cell count falling too low, which means currently my dose is too low to keep me in remission. Hoping to discuss this at my next appointment. I feel the vast majority of...

You can be tested for coeliac disease with a simple blood test, and biopsies from your duodenum during an oral endoscopy. If these are negative it will not be coeliac disease. I would suggest a pill cam. Someone else on this forum has upper small bowel / stomach Crohn's disease and his fecal...

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...

Hey, I am sorry for what you are going through. I agree with everything the other poster said and just wanted to concur the first image appears to show apthous ulcers.

I think the issue is, when people are first diagnosed, often they have had years of inflammation causing damage to their bowel that no one has known about and they have not been treated for. Crohns is a difficult disease to diagnose. It is common that the disease is first diagnosed during an...

https://newyork.cbslocal.com/2018/07/19/vagus-nerve-stimulator-crohns-disease-inflammation/

Hey irishgal. I agree with what you are saying. I think the thing is with the MAP theory there is a lot of buzz around it because it held/holds the potential to explain the cause of Crohn's in some/all. There aren't really many other avenues being explored right now as the underlying cause of...

Can we not have a support group for those who have experienced perforations?

Agree with all of this.

I think the disappointment for me was this avenue of research targeting this bacteria was kind of talked about as a possible cure avenue and these numbers do not reflect that. The remission rates of remicade and humira are not ideal. I guess I was hoping for much higher remission rates in this...

https://www.fiercebiotech.com/biotech/redhill-s-rhb-104-hits-primary-endpoint-crohn-s-phase-3

The numbers of people in remission seem low. Only 18% achieved continuous remission from weeks 16-52. I’m pleased their findings were significant but I guess I was hoping for higher numbers achieving and sustaining remission, given that so many hope this avenue of treatment could lead to a...

It took me about 10 years... they even surgically removed a piece of diseased, ulcerated and perforated bowel and they STILL got it wrong :rof:

Yes my dad has mild ulcerative colitis and then I have Crohn’s and probably a severe form (based on I’ve had a perforation before) what rubbish luck!! My dad is the only person ion the family we are aware of to get IBD. My brother so far, 27 and healthy.