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Autoimmune disease

IBD / colitis care Beds/Herts/Bucks

9 replies

INeedNewShoes · 07/03/2022 09:49

I was diagnosed with UC in 2010. It took a couple of years but eventually things were controlled well by Azathioprine. I tapered that off and have been unmedicated and 'in remission' since the end of 2015.

I think I'm at the start of a flare now. As first port of call I've made an appointment with the GP to try and arrange tests to rule out that I've caught a bug but it seems very colitis-y to me.

My initial colitis care was in London and I was very happy with it. Trusted my doctor and his team and had confidence in them. I don't live in London any more though and I want to make sure that I get referred to a hospital nearer home with good IBD care if I'm going to be dealing with a colitis flare.

I live on the border of Beds/Herts/Bucks and wonder if anyone here has experience of which hospital would be a good call for IBD care?

OP posts:
PatterPaws · 07/03/2022 15:57

Sorry about your UC, OP. Which hospital were you at in London?

Susu49 · 07/03/2022 15:59

Look at one the big teaching hospitals like in Oxford. Hope you feel better soon Flowers

INeedNewShoes · 07/03/2022 18:10

Chelsea & Westminster

I spoke to my GP today who has advised me to stay with C&W despite the travel etc.

OP posts:
MunsteadWood · 07/03/2022 18:19

I have Crohn's and live in a similar area to you. When I moved here (also from London) I decided to stay with my previous consultant rather than moving care to a nearer hospital. I'll admit I've not really researched care here and it may be absolutely fine but I've heard such mixed reports from friends with the condition around the country (some great, some downright awful) that I decided I'd rather stick with the hospital who knew my case and accept the slight extra faff of having to get there when I needed to be seen face to face. With outpatients appointments moving to virtual during the pandemic it's actually been way less hassle than I'd envisaged, and I also get regular blood tests etc done via my local GP and just email over the results to my specialist nurse. Something to consider.

MunsteadWood · 07/03/2022 18:21

Aha! Cross post. Yes, I'd definitely consider your GPs advice. That's basically what I've done and it's worked well for me so far. (although that said my condition is reasonably stable at the moment)

INeedNewShoes · 07/03/2022 21:08

Thank you.

I know that when I moved out of London I felt at the point that I wanted to stay in the care of C&W.

It's just the logistics of going to appointments etc. now that I have DC to think about who needs taking to school etc.

And if I end up having surgery it will be more complicated being further away. Obviously the flip side being that if I have to have surgery I want the best possible care and if that means sticking with my current IBD team then so be it.

OP posts:
MumandnotMum · 07/03/2022 21:12

There’s a forum on Facebook if you’re on there called Crohns and Colitis UK forum. It’s run by the charity but everyone in there is very knowledgeable about the disease and various IBD teams around the country. It’s a great group.

PatterPaws · 08/03/2022 09:39

I travel much further than you for my treatment for IBD at a London hospital.

When I'm well, consultations are done by phone. My local GP organizes blood tests when required.

If you're able to, staying with your London consultant can work well, though you may need someone to drive you when you're too unwell to use public transport.

Good luck with your treatment, OP.

Nosnogginginthekitchen · 08/03/2022 09:41

I've got friends who've had good care in the Oxford hospitals

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