Crohns / ulcerative colitis sufferers

[dirtychinchilla]

I wouldn't be worried about switching to biologics. I've had crohn's for about 18 years and was on Azathioprine for maybe the first eight years. It worked for a long time. Honestly, I think it only stopped taking it because I tried to reduce the dose myself, and in hindsight that was dumb.

I've had several biologics now and they've always worked fairly well.

Having said that, I'm not onto Rinvoq (upadacitinib) as of 22/12/23 and I don't think it's kicked in yet. I'm taking lots of pred to avoid feeling ******, and tbh it's not working. The hospital really screwed up the transition from my previous medication to this one. It was far too long and completely mismanaged. Safe to say, I'm annoyed. The stricture I have kicks off practically every other day and really I'm waiting to find out if the new medication reduces the inflammation/stricture or if the scar tissue is a permanent limit. Then, it's surgery.

With having a slipped disc and some other personal challenges, the past three months have probably been the most difficult of my life.

 

[mattyg]

I wouldn't be worried about switching to biologics. I've had crohn's for about 18 years and was on Azathioprine for maybe the first eight years. It worked for a long time. Honestly, I think it only stopped taking it because I tried to reduce the dose myself, and in hindsight that was dumb.

I've had several biologics now and they've always worked fairly well.

Having said that, I'm not onto Rinvoq (upadacitinib) as of 22/12/23 and I don't think it's kicked in yet. I'm taking lots of pred to avoid feeling ******, and tbh it's not working. The hospital really screwed up the transition from my previous medication to this one. It was far too long and completely mismanaged. Safe to say, I'm annoyed. The stricture I have kicks off practically every other day and really I'm waiting to find out if the new medication reduces the inflammation/stricture or if the scar tissue is a permanent limit. Then, it's surgery.

With having a slipped disc and some other personal challenges, the past three months have probably been the most difficult of my life.

I'm not worries as such. Its just a progression of the disease. Feels like a slippery slope when I had a few years of remission. I'm very lucky in that I own my own businesses that i can run from the toilet if needs be. Its just always in the back of my mind that things can be worse and it feels like its heading that way. This flare up has been going on for nearly 18 months. I'm no longer carrying a bag with spare clothes everytime I go out but have had some really close calls..

 

[mattyg]

I went from azathioprine to infliximab infusions. No joke as the first infusion went in it switched off my colitis then and there.

I was so ill on azathioprine and even worse on prednisone.

Fast forward they dropped me down to self administered pens then they messed the prescription up and I missed a month then I tried not taking it for three months, now a year and nothing has returned so much so my specialist keeps bumping my appointments, he says come back when you need to.

Hope they work as well for you

I'm hoping for the same... I usually respond pretty well to Pred but they only kept me on full dose for a week before tapering this time which i dont think was quite long enough..

 

[Lightnix]

Yeah I've been on azathioprine for the best part of a year and my most recent flare has been worse than the one that got me on it in the first place. Budesonide mostly works fine for me but takes time to kick in and obviously doesn't stop the next flare. They're talking about potentially 'escalating' my treatment, in vague terms, pending an MRI.

 

[firstborn]

Another thread I would never have thought I'd end up posting in... just started 45mg Pred due to colitis as a side effect of cancer treatment. The last week has had some 'interesting moments'. Onwards and upwards and don't stray to far from the loo!

 

[Minusorange]

I went from azathioprine to infliximab infusions. No joke as the first infusion went in it switched off my colitis then and there.

I've gone from azathioprine to adalimumab to azathioprine + adalimumab back to just adalimumab because the combo despite having me feel the best I've felt brought my immune markers too low, so now I'm on infliximab where I don't feel any better, in fact currently suffering pain, second flare up I've had since going on that in August.

 

[Lightnix]

Yeah I've been on azathioprine for the best part of a year and my most recent flare has been worse than the one that got me on it in the first place. Budesonide mostly works fine for me but takes time to kick in and obviously doesn't stop the next flare. They're talking about potentially 'escalating' my treatment, in vague terms, pending an MRI.

Apparently I'm going to be blessed with some adalimumab, with a bio similar which the nurse I spoke to has comfortingly mentioned they're looking to replace because they've had so many reports from patients about how painful it is to inject. So looking forward to that.

Other than that I've also apparently had an iron deficiency so generally feeling like crap and now I have a cold which is so far probably the least-worst health issue I've had this year, other than for the possibility that it gets "interesting" because of the meds.

 

[Minusorange]

so many reports from patients about how painful it is to inject.

You certainly do feel it when you pull the trigger button compared to manual injections

 

[dowie]

Apparently I'm going to be blessed with some adalimumab, with a bio similar which the nurse I spoke to has comfortingly mentioned they're looking to replace because they've had so many reports from patients about how painful it is to inject. So looking forward to that.

I hope they do, I mentioned to a consultant that the injector is pretty naff, takes much longer to inject than the original Humira ones and is more painful, the Humira ones would only hurt a little bit and there was a knack to taking them relatively painlessly. Happy to take it if it saves the NHS money but the company really did screw up the product.

It's also just annoying in general to have those bulky autoinjectors - like I get they make sure even the most incompetent person can still inject but when self-injecting an anticoagulant after an operation you just get little syringes and barely feel a thing with those.

 

[DB_SamX]

You certainly do feel it when you pull the trigger button compared to manual injections

I hate self-injecting. It can take me a long time to build up the courage to do it. And i don't know if i prefer the manual or spring-loaded needles.

 

[spp]

I prefer the spring-loaded needles for sure. I have a phobia of needles and so not having to see the needle helps. Agree with the comment above about having to build up the courage to do it. Would certainly take the jab over the colitis symptoms though! Spent a couple of years on adalimumab after infliximab stopped working. Now on upadacitinib tablets after the adalimumab stopped working. So far upadacitinib seems to be working well. Only been on it for a five weeks but feel much better in terms of colitis symptoms.

 

[mattyg]

My IBD nurse called today. Had the MDT meeting this week and they've agreed to put me on biologics. I even get to choose which one.

Maybe I should do a poll

Infliximab

or

Adalimumab

 

[ColdAsIce]

Guys leave the injection out of the fridge for 15/20 mins and it won’t sting so bad. Also I go for the upper thighs as the injection point.

 

[ANDREW GREEN]

I first had ulcerative colitis that was diagnosed 23 years ago. I needed to be near a toilet 24/7 and lost blood at every visit probably going 15-20 times per day. It went away for a bit (couple of months) when I was less stressed and incorporating more healthy fats and fibrous vegetables in my diet but then returned. I was taking a medication, which I believe was an NSAID anti inflammatory that was helping me recover. However because work stopped me visiting the specialist, I couldn't get the repeat prescription I needed and it returned.

One thing I noticed was that when I ordered a hot vindaloo the blood stopped the next day. Could it be that the chilli and garlic reduced a bacterial infection? Or was it just the garlic made the stool loser and caused less friction? I don't know but it helped. My UC got quite bad on a trip to Peru 20 years ago. My girlfriends cousin got me some bromelain to help treat it. Whether it was the bromelain or a natural recovery it went away for many many years. But it did return in the past year. At least bleeding did, I haven't had a colonoscopy to check if that was the cause. But I've added turmeric to all my meals and the bleeding has stopped for the past month. Turmeric is an anti-inflammatory agent.

Some of those dietary and supplement ideas maybe helpful for UC sufferers but it probably depends on the cause of your UC. Best of luck, it's such a debilitating condition.

 

[DB_SamX]

My IBD nurse called today. Had the MDT meeting this week and they've agreed to put me on biologics. I even get to choose which one.

Maybe I should do a poll

Infliximab

or

Adalimumab

What's the method of delivery for Infliximab these days ; is it still infusion at the hospital over a couple of hours? That used to wear me out.

 

[DB_SamX]

Guys leave the injection out of the fridge for 15/20 mins and it won’t sting so bad. Also I go for the upper thighs as the injection point.

I prefer thr tummy, as I've gotna bit of flat so it hurts less.

 

[Minusorange]

What's the method of delivery for Infliximab these days ; is it still infusion at the hospital over a couple of hours? That used to wear me out.

Infusion on first dose, then self injection every 8 weeks, it's manual injection, I prefer it, it's painless

 

[spp]

My IBD nurse called today. Had the MDT meeting this week and they've agreed to put me on biologics. I even get to choose which one.

Maybe I should do a poll

Infliximab

or

Adalimumab

Whenever I’m given the choice I always look at the relevant fact sheets over at Crohns and Colitis UK, and try to pick the one with the fewest/least severe side effects. In terms of Infliximab and Adalimumab, my hospital seem to start with infliximab and if it initially works but then stops, they move to adalimumab combined with azathioprine.

 

[andybird123]

You’ll have to forgive me because I know very little to nothing about the affliction so apologies if I am misspeaking.

But please be very very careful with the carnivore diet. There are a ton of issues with it. Some fighters I know have used it very successfully to cut weight long term but the amount of work and supplementation they had to use to get it to work healthily was more than any diet I’ve ever known, and some had some disastrous issues after about 6 months, and it had done long term damage before they realised it.

I've been carnivore 8 months, zero issues, blood tests are better than at any point in the last 20 years, blood pressure has gone from 148/110 to 122/78. Gerd fixed, diarrhea gone.

I can't fathom how they could have screwed it up, it's a really easy diet to follow, you take out everything except meat to begin with and then add back in what you feel like and check for reactions, I'm about 90-95% just meat and eggs, bit of dairy. The 5% is coffee, sauerkraut, a few nuts etc. you just have to make sure you're getting enough fat with it.

Zero supplements, in fact if they were overdoing supplements I would say that was their issue as you don't need any on carnivore. They weren't taking like liver pills or something were they? Or were they trying to count calories with it?

 

[dowie]

Infusion on first dose, then self injection every 8 weeks, it's manual injection, I prefer it, it's painless

Damn, that would be neat! I'd much prefer that, also means traveling would be so much easier too - could go away for 2-3 weeks and not need to worry about bringing an injection etc..