Chrons & Colitis

I know a few people on here have been diagnosed with one of the above, and was wondering if anyone has been given Infliximab?

Have had a pretty good flare up for about 2 months now, and at my worst, going to the toilet 20+ times a day, and passing straight up blood alone.

I've had a blood test to check my eligibility for the Infliximab, in the hope to start it pretty soon and hopefully, sort me out!

I'm going through a fee things at the moment. I've passed blood a few times and recently it was very painful.
I've never had normal 'toileting' shall I say. I go to the loo every hour minimum and 3-4 times a day for the other kind.
I've had blood tests etc done and they've not said too much, the Dr is finally trying to get me seen by a specialist with a camera , downside is it says no appointments available

I was on it for a bit, unfortunately only worked for around 8 months before I got antibodies to it so it stopped working  

Feel free to drop me a PM if you want

Sorry to hear that Luke

Keep pushing, I can't access at the mo but bring up the NICE guidelines for diagnosing if you can.  Pester them (I know it's all short staffed but the squeaky wheel gets the oil)

The Crohns & Colitis site has a lot of good info (including info you can pass onto your employer if you do have a form of IBD)

https://crohnsandcolitis.org.uk/

Any more advice would be great. I'm currently sat in A+E Taunton, my doctor called this morning and due to a couple of changes recently (bad lowe back pain being one) she said I need to go to A+E immediately.

Quoted from lukeo

Any more advice would be great. I'm currently sat in A+E Taunton, my doctor called this morning and due to a couple of changes recently (bad lowe back pain being one) she said I need to go to A+E immediately.

I hope you get sorted out.

Quoted from lukeo

I'm going through a fee things at the moment. I've passed blood a few times and recently it was very painful.
I've never had normal 'toileting' shall I say. I go to the loo every hour minimum and 3-4 times a day for the other kind.
I've had blood tests etc done and they've not said too much, the Dr is finally trying to get me seen by a specialist with a camera , downside is it says no appointments available

Blood is the most common symptom i believe, well it was, and still is my main one.
I've got my first infliximab on Monday, and will have another one 2 weeks later, then self injections 4 weeks after the 2nd dose which will be once every 2 weeks.

Without getting personal, are you going through any stress in your life atm? thats a big trigger that will cause a flare up if it is one of these that you may have.

P.s the camera is uncomfortable, and not the best, but with gas and air, it makes it bearable, so don't worry about that bit.

Quoted from lukeo

Any more advice would be great. I'm currently sat in A+E Taunton, my doctor called this morning and due to a couple of changes recently (bad lowe back pain being one) she said I need to go to A+E immediately.

Maybe a bit late now, but keep a diary of when you go and use the Bristol chart so you can explain properly to them https://plr.cht.nhs.uk/download/1111/Healthy%20Bowel%20A4

Also found keeping a food diary helped, Crohns & Colitis aren't triggered by food certain foods definitely caused me more issued.  Following a low residue diet can help when you're in a flare up.  https://www.northdevonhealth.nhs.uk/wp-content/uploads/2019/11/low_fibre_low_residue_diet.pdf


Another thing I've only found out recently is that sweeteners can make IBD worse so try to avoid them if you can https://www.pharmacytimes.com/view/artificial-sweetener-may-exacerbate-inflammatory-bowel-disease

To be honest I've never been happier regards my home life. I've been through alot since moving away from Grimsby 11 years ago but I've genuinely found a brilliant woman and we've created a family home and my personal life is good. Work is quite mentally draining though.
Regards yesterday I was in hospital for 5 hours. I was put on a drip for an hour as my blood pressure and other things weren't brilliant. Blood results came back showing my white blood cells inflamed (fighting an infection) but other than that things seemed OK. I'm still on the list for the camera, I'm 99% sure it's 1 of the 2 mention and I'll be spending the next couple days reading the links some of you have posted (thank you by the way!)

Quoted from lukeo

To be honest I've never been happier regards my home life. I've been through alot since moving away from Grimsby 11 years ago but I've genuinely found a brilliant woman and we've created a family home and my personal life is good. Work is quite mentally draining though.
Regards yesterday I was in hospital for 5 hours. I was put on a drip for an hour as my blood pressure and other things weren't brilliant. Blood results came back showing my white blood cells inflamed (fighting an infection) but other than that things seemed OK. I'm still on the list for the camera, I'm 99% sure it's 1 of the 2 mention and I'll be spending the next couple days reading the links some of you have posted (thank you by the way!)

Don't worry about an endoscopy, I have one every 2 years. It's the thought that's more worrying than the procedure.

Coeliac disease could be another possibility @Lukeo so make sure they test for this too if they haven't already.  If they do test for it, make sure you're eating plenty of gluten foods prior, as cutting it out can lead to false results  

They did that with the bloods yesterday and it was clear.

How is everyone?

I'm waiting for the camera to determine what's going on. I'm back to work, how are you?

Had the Infliximab on 22nd May.
Bloody stools, around 20-25 times a day.

Next day it stopped, went back to normal, no blood.

I'm due my 2nd dose 05th June, and can slowly feel it creeping back in.
I'm hoping the top up will do me good, then onto self injections, once every 2 weeks

Really hope it works for you

Wow man that sounds a bit scary if I'm honest, hope it goes well