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Wow this is an old one of my threads. I can confirm in the last 6 years I’ve remained on azathioprine at 50 mg. I have had occasions where I have got black out drunk and been OK. However the hangovers are god awful. I rarely drink except on occasion.

Hello, I’ve been on azathioprine for 5 years and one thing that struck me in your post is that it reads like you started on 125mg? That seems to me like a very high dose to start on. I only started on 25mg and then worked up to stronger doses only as my body got used to it, and checking no...

Thanks Lisa, were you tested for pernicious anemia? Or is the deficiency associated with your Crohn's?

I have been diagnosed with low b12 (my level is 148). I am struggling to understand why this may be. I don't think it is my diet as I eat meat daily. I would be surprised if it is due to my crohn's. While my crohn's is in my terminal ileum, where b12 is absorbed, I am in remission and my last...

I had Crohn’s unknowingly for about 5 years before it caused a perforation, therefore since my diagnosis I have always known I was going to have to risk drug side-effects than risk this disease. I’ve been on imuran now for 5 years, and it’s been 10 years since my surgery so it’s clearly made a...

I have heard of people who have needed to get a diagnosis via a pill cam so that could be an option. I have the thing you describe with the blunted duodenum however my disease is visible at the terminal ileum. They did wonder whether coeliac disease may cause the upper GI problems. Have you had...

I’ve had Crohn’s since a teenager (though undiagnosed for quite some time). I had a horrible time getting a diagnosis and severe Crohn’s that required emergency surgery to treat a perforation 10 years ago. I’m 32 soon and today I passed my viva and have been awarded my PhD! I now work full-time...

Thank you :-) I achieved it through always eating breakfast, lunch and dinner (used to always miss breakfast) and through regular snacking throughout the day.

Hello! Since lockdown (March 2020) I have slowly gained weight and now weigh the most I have ever in my life! My BMI is currently about 21.

Hi Emma how are you?

My dad has ulcerative colitis and I have crohn's.

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...

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.

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...

My fecal calproctectin was 65 when I was diagnosed.

It is worth bearing in mind that biopsies don’t show the classic diagnosistic features of Crohn’s in a (majority?) of cases. My biopsies did not show Crohn’s but I was diagnosed with it anyway based on the visual appearance of my bowel during the colonoscopy by my gastroenterologist.

I'm weighed at every single appointment.

Hi, I’m sorry to hear what you have been going through. I would recommend getting tested for intolerances like lactose and to see if you could be coeliac. I would at the same time request a fecal calproctectin stool test for bowel inflammation. Seeing as your mother has Crohn’s I would never...

Haha yes that’s exactly it! Such a horrible feeling. Really don’t want to ever need surgery again and definitely don’t want another perforation. Yes I’ve done the wheelchair journey from the ward to the car park haha!! Must be so horrible for our families. Yes it does feel mad to poison our...

Hey Grant! Thanks I know, love that song 😊. Thanks for the info and really interesting. So pleased you have been able to have laparoscopic surgeries. Open really isn’t great. I was in hospital for a week and really struggled during that week with pain, I was worried a cough or small movement...