Search results

Hello and welcome to the forum Unfortunately it is fairly common for people with IBD to either be undiagnosed or have an incorrect diagnosis for a long time, personally it took nearly five years for me to get a diagnosis. Just a question, when you say you only had to take 16 out of 30 pills...

Hello, welcome to the forum I was also diagnosed at 19, but had been undiagnosed for a long time and needed surgery within 6 months of diagnosis. No one can tell you for sure how your future will be, but treatments are getting more successful (and safer) all the time. Some people with Crohn's...

@Jo-mom thankyou, I've had issues with my hip for years now but this is definitely the longest flare up with no break and it's getting worse the longer it goes on. My heat pad is my best friend and is essentially glued to me! I already have some compression gloves that help a little but the...

So I had my rheumatology follow up on Monday. I'm getting a referral to occupational therapy to sort out some support/compression gloves for my hands as she (finally) agrees they're inflamed. There's also a swelling/lump on my hip which she wants looked into, so I'm being sent for an ultrasound...

Hi jo- mom Remicade worked great for me but unfortunately I had a huge allergic reaction to it and had to come off it. I've been a member here since just after I was diagnosed and it really helped me, especially as at the time there was little to no support in the UK. Its unfortunately all too...

Hello everyone, I was diagnosed with Crohn's in 2012 after 5 years of unexplained symptoms. I have been stable on Vedolizumab for 4 years. I live in the UK and love music and art. Feel free to contact me if theres anything you think I could help with x

Hi CatLover I'm sorry you're having issues getting to see your GP, I know its very difficult at the moment, but they should be allowing appointments for patients with urgent needs. Unfortunately we all understand the feeling of trying to conserve energy and not being able to function quite as...

Hi GI Jane I've had chronic pain since I was 12, so I've definitely learnt along the way that sometimes I can push past, but other times its better to listen to my body. I used to be very bad at knowing when to stop and would pay for it massively but I'm a lot better at it now. I have a long...

I was like a child at Christmas when my first ones were delivered. We're already planning a trip next October if it's safe, the possibilities are so exciting and it secures this treatment for as long as I can tolerate it. I honestly think this is life changing for so many patients.

Hi MLP glad your kiddo is doing better! We are currently deciding what to try next, leflunomide has been broached as a potential if things get worse, which they have now, but with big reluctance. I'm seeing my rheumatologist in the next few weeks. She's previously said she didn't want to...

Hello there, a lot of members will probably remember me from a year or two ago, but I know there will be some new members who don't know me and it's also been a long while since I posted so I thought I'd do a kind of re-introduction. I'm Nicola , I'm 27 and I'm from the UK. I've had symptoms...

Hi everyone I've been on vedolizumab infusions for around 4 years with great success, but recently we were really concerned I'd have to stop treatment because my veins are so badly damaged from years of IVs. We were also concerned about me having trouble getting to appointments due to the...

I don't have any real advice, the only thing I can think of is maybe the muscles are still healing, as you've had so many surgeries I wonder if it's slowed the process down a bit. Other than that I just wanted to send my love, it sucks you're still having to deal with complications so long after...

When I had my resection the physio therapists came to assess my mobility before I was discharged, and part of this was making sure I could safely get up and down the stairs to get up to my bedroom. If you have stairs in your house it's standard in the UK to make sure you're safe to climb them...

Hello, welcome to the forum Unfortunately Crohn's disease and ibd in general are notoriously hard to diagnose as there are so many different symptoms and patterns of disease. For me, it took almost 5 years to get a diagnosis, and even longer for all of my doctor's to agree. My first...

The PT isn't really aimed at the arthritis to be honest, the rheumy thinks I have a problem with the tendons in my hip and that's what's causing the horrendous pain I'm getting recently (it's waking me up from deep sleep and I can't walk more than a few paces some days) . We're in the process...

Hi, welcome to the forum. Remicade can cause some joint related side effects including joint pain and drug induced lupus, but I would have thought these would occur while still being treated with remicade and not after it had been withdrawn. Remicade is also used as a treatment for some types...

I had a rheumy follow up on Monday and it has been decided that I am going to come off methotrexate injections as I feel 100x better without them. I am being sent for physio therapy for my hip as she believes there is a problem with the tendon, and will be seen in clinic in three months.

The system in the UK is more complicated, partly because we don't pay to see our doctors, usually a second opinion is for when a doctor is unable to deal with your case because it's too complex or outside their speciality. We have a right to ask for a second opinion, but usually people only...

And I'm really happy with my gi, he's not the only one I've heard of not allowing someone to take humira after a reaction to inflectra and to be honest the other consultant at my hospital (can't travel outside the hospital/health board im under) ignored my Crohn's completely