I took it over a decade ago but I think it started working quickly for me. Over time (years) I developed antibodies and adverse reaction to it though.Hi all
Other half has had UC for about 2 years. Since July, has been in a big flare which her medication hasn’t been able to suppress.
Ended up being admitted 10 days ago.
IV steroids couldn’t clear up her CRP marker which has been hovering at mid 30s, though did drop to mid teens when she felt her worst.
They started her on Infliximab on Tuesday and since then has felt brilliant. Normal stool etc
However her CRP has been hovering at mid 30s, now at 40.
Doctors are mega confused as she’s up and about pain/blood free.
Wondering if anyone else went through something similar as she’s feeling quite defeated and confused.
Ta
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
I'm surprised she's on infliximab personally, it was never on the table for me even with chronicity, as I was told it's a Chron's drug. Adalimumab did nothing for me, but Vedolizumab was a wonder drug, eventually.
It took months, and it wasn't until I made major dietary changes that the switch flipped. I was having my surgery consults.
Biologics take time, a single dose isn't the cure-all, so perhaps it's a coincidence and she's beginning her rebound...
Vedolizumab is very expensive and my understanding is not available in all trusts, but there's an injection variant now that's very promising. It's also very specific without some of the side effects of the broader biologics. Certainly saved me from surgery and the bag once I bailed diet and supplements, so worth knowing.
Last edited:
Soldato
- Joined
- 14 Apr 2014
- Posts
- 8,414
- Location
- Hampshire
Reading some really interesting stuff.
Have been advised from the IBD team that diet will absolutely have no impact on her colitis. I know all cases are different but just seems to contradict everything else I've heard.
I think they've gone straight to Infliximab because it was diagnosed, this time around, as acute severe colitis which has spread throughout.
Bonkers situation though - we were up and about walking around the hospital yesterday. No pain whatsoever, but today a surgeon has been round to discuss what the surgery would look like.
If we didn't have the bloods to back up their claims, it would feel like we're being gaslit for sure.
Soldato
- Joined
- 2 May 2011
- Posts
- 12,525
- Location
- Woking
With regards to ops, I had one last year and it was life changing. On reflection, I know why I put it off for so long, but it was definitely the wrong decision.
Soldato
- Joined
- 14 Apr 2014
- Posts
- 8,414
- Location
- Hampshire
Life changing in a good way? And wrong decision to put it off?
Soldato
- Joined
- 2 May 2011
- Posts
- 12,525
- Location
- Woking
For me, it was a really positive experience. I was told years ago that I needed a section of my small bowel removed, but it wasn't pushed on me and at the time I had very few symptoms, so I rejected the offer.
A few years later, I find myself on a liquid diet for about six months. I couldn't wait to get that bit of small bowel out. It took a few weeks to recover and feel good, but I could eat again straight after. It was brilliant.
Having said that, what I can't quantify is how much damage I did in between the first offer and actually having the surgery...would I have had to have two surgeries instead of one for example? I have no idea.
Associate
- Joined
- 17 Sep 2018
- Posts
- 1,646
A change of diet helped me when I had UC. Plenty of veg (carrots, cellery and other fiberous veg), onions, garlic, ginger in tomato sauce really helped me.
Reduced stress and healthy fats also helped the bleeding from my UC also clear up.
Not been on the forums for a while and thus my sub to this didn't immediately crop up on the alerts. 23 years in October since I was diagnosed with my Crohn's, half of my lifetime. Not had (or needed) any form of surgery (so far), and only in the last 14 months did I switch to Adalimumab (Yuflyma) injections. Have had some issues with my throat and had my first endoscopy in May (going down rather than up) followed by an MRI in July to help check the throat and acid reflux issues. Visited the hospital only last week for a catch-up with a consultant (though I'm still not assigned to one since my original consultant retired ~3 years ago) who's booking me in for what might be my 8 or 9 colonoscopy and that's about it for now 
.
.
Last edited:
Yep, that's what they told me. For years and years trying to get me off steroids (I was on so much for so long it damaged my skin, and gave me osteopenia amongst other things).
They insisted diet would do nothing, just avoid triggers etc.
Had my surgical consult, it absolutely terrified me. Talked about the potential for nerve damage as it's deep in the pelvis, etc.
Anyway, in desperation I just started researching looked into anti inflammatory foods, supplements etc. I ignored some of the more conventional advice and one at a time introduced meals and supplements. About 1-2 months later my CRP and other markers were dropping, and I was lowering steroids doses, after years of being so ill I couldn't work.
Over the years I've tried removing certain supplements, and certain foods (I can be much more relaxed with diet since stabilising) and every time I've flared and had inflammatory markers if I stray too far from my protocol.
Don't claim it'll work for anyone else, or it's not some strange psychosomatic thing, but I remain absolutely certain that diet impacts (at least my) IBD in a big way.
Given the amount of research into gut microbiome, inflammation and autoimmune disease, I still reckon the advice will be very different in a few years.
Either way really wish her all the best.
Soldato
- Joined
- 2 May 2011
- Posts
- 12,525
- Location
- Woking
I suffer really badly with memory loss. My life is a haze. I was a pothead from about 20-30, but I'm now 36 and so my brain should have recovered. But even my childhood and teenage years are a complete blur. Day to day, I have loads of brain fog, forget words, forget people's names, etc.
I stumbled up this post on Reddit (https://www.reddit.com/r/CrohnsDisease/s/aMqZAjn1sf) where this guy had basically found that this thing called MMA is a much better indicator of B12, with B12 deficiency having these sort of memory symptoms.
My B12 is fine, so I'm hoping to get this MMA checked out before having any neurological tests. I feel like my GP is ready to tell me it'll be useless though, and I'm not doctor so I'm getting my info from Reddit, and from ChatGPT sourcing papers for me.
I'm not really sure how to approach this, so any advice would be appreciated. My first thought is to send the info all by email (which I did already, but send a supplementary email) to ensure that the GP can read anything they feel they need to before the appointment.
I stumbled up this post on Reddit (https://www.reddit.com/r/CrohnsDisease/s/aMqZAjn1sf) where this guy had basically found that this thing called MMA is a much better indicator of B12, with B12 deficiency having these sort of memory symptoms.
My B12 is fine, so I'm hoping to get this MMA checked out before having any neurological tests. I feel like my GP is ready to tell me it'll be useless though, and I'm not doctor so I'm getting my info from Reddit, and from ChatGPT sourcing papers for me.
I'm not really sure how to approach this, so any advice would be appreciated. My first thought is to send the info all by email (which I did already, but send a supplementary email) to ensure that the GP can read anything they feel they need to before the appointment.
GP rarely have any insight into crohns disease. It's very specialised. When I first diagnosed almost 20 years ago. Some doctors didn't even believe in it :/ Do you have a specialist at a clinic you can discuss with?
Soldato
- Joined
- 2 May 2011
- Posts
- 12,525
- Location
- Woking
That's a very good point. Yes, of course - I'll contact them
I was also diagnosed 20 years ago, although I've never spoken to anyone who didn't believe in it!