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Hello, Am I right in thinking you don't have any form of diagnosis? There are a lot of conditions that can cause issues like the ones you are describing and IBD is definitely in there, another one to look into is coeliac (celiac in the US) disease. IBD symptoms can vary a lot from person to...

Hello, I have suffered with ulcers in my mouth and on my lips for years, it was one of the first indicators of the major flare that lead to my diagnosis. My IBD nurse has since diagnosed me with oral Crohn's. It is fairly common for people with IBD to get sores in the mouth and even the...

Hello, My advice would be to make a little diary of your symptoms, anything that seems to make them worse or better including foods and any OTC meds you might have tried, make sure you list all symptoms, even ones you might not think are related. Have a list of questions some good ones to...

I have always tapered off 5mg per time as MLP is describing, generally the slower you go the easier it is to taper, it may differ between doctors but it's what many advise.

Unfortunately responsiveness does vary between hospitals but I do know a lot of services have been disrupted due to Covid-19 , my hospital shut down the IBD line for a few months because the IBD nurses had returned to the wards so you might find that when things eventually calm down it will be...

I think this is going to be different for everyone but some of the ways I tell are - * The severity and duration of my symptoms, if I vomit twice one day and then feel fine the next, its most likely a bug, when its a flare I have intermittent nausea and vomiting for weeks * The location of...

I have had coeliac disease since I was 14, I have very severe disease and my lips swell at even a trace of gluten so I absolutely understand how important it is to know what's in everything you put in your body. In the UK, all potential allergens have to be clearly marked in the pharmaceutical...

Hello and welcome to the forum I was on azathioprine for a short while about 6 years ago. Yellow urine is actually a very common side effect and usually nothing to worry about, blotchy skin can be a sign of a small allergic reaction though, so I would agree with your GP that it would be wise...

Hello, Sorry I'm a bit late on this but I hope I can still be helpful. I was only 19 when I was diagnosed and I went to a lot of appointments alone so there were a lot of questions I didn't think to ask. Ask where your disease is and how severe they think it is . Ask if you have any...

I definitely see why people find it difficult to come to terms with the fact that some medications for Crohn's disease come from animal sources and contain animal ingredients. Unfortunately, every medicine currently in use in the US and UK will have been tested on animals at some point, there is...

I think the drink in itself is safe to drink, but I think if you're planning to use it as a replacement for food you definitely need to let your medical team know. I was on modulen for 6 weeks as an adult and had to be very closely monitored. If you just plan on using it as a supplement you...

It must be so hard having to fight insurance to get what your kiddo needs. Makes me ever more grateful for our NHS. Thankyou I will ask for a referral. I think in the UK GPs can do some allergy testing etc so that might be the place to ask first as specialist appointments are taking a really...

I have only been given infliximab (inflectra) but because I already have issues with asthma and some issues with my heart beat plus I seem to have developed a sudden tendancy to allergies (I developed allergies to 3 drugs in one year 🙃) my consultant and main ibd nurses have said they would be...

Hello, Not a parent but I started getting Crohn's symptoms at 15 and was diagnosed at 19 so I hope you don't mind me chipping in. I mainly wanted to let you know what I've found helpful from a symptom management point of view.. Heat is one of the things a lot of people, I use a heating pad...

Unfortunately I am currently having what we think is a flare up of my Crohn's. Hopefully a simple course of steroids will be all I need to get back on an even footing.

I understand your hesitancy, but unfortunately for a lot of us just changing our diets won't cut it. Before I started vedolizumab, I had 10 hospital admissions in two years, all at least a week long, I did EEN, very low fibre/low res diets, I did azathioprine, mercaptopurine, surgery, NMB with...

I have now done over 20 injections and I am pleased to report there have been no issues with injecting or with side effects. The injections are a little painful, and I've bruised myself a couple of times but nothing drastic or scary. I know some people in the UK have been reluctant to take them...

Just thought I'd add an update as I haven't in a while.. My arthritis is much the same, I have been using hand splints and a knee splint consistently which has helped, unfortunately we had to postpone the ultrasound on my hip as they couldn't do it at my local hospital (I was told they could)...

Im sorry I'm late in on this, I've been away from the forum on and off myself. I just wanted to say I'm sorry you're having such a rough time, emergency surgery in any circumstances can be overwhelming and takes a big physical and mental toll, I can't imagine trying to deal with that as well...

Hello and welcome to the forum I was diagnosed when I was 19, although I started getting symptoms at 15 so we're quite similar in that respect. I have multiple other conditions too, its actually fairly common here, you'll find a lot of people will relate to the challenge of trying to juggle...