For those of you with colitis..

[Theforest]

What medication works for you and how many attempts did it take to get it right?

Also have you identified any food triggers for flares?

I am newly diagnosed (left sided) and finding first prescription of salofalk isn't helping at all. Trying just to stick to low fibre but also not making a difference.

Thanks 🙏

Not me, but DS has Crohns so I know his regime and lots of other people's too. Everyone I know here in Ireland is taking biologics - inflectra or Humeria mainly. Some ramp up to them from steroids and Salofalk, but biologics is where they end up.

Keep pushing your GI team to consider them, they are life changing for many.

Not me but a member of my family.

They did the low FODMAP diet and identified what their triggers were that way. For them it's mostly mushrooms, lettuce, beans, pears, caffeine in any form, some sweeteners and eating too much onion/garlic in one go. They can still eat most of those things in very small amounts as long as they are otherwise feeling well.

Mixed results with salofalk foam, if the flare up is particularly bad it doesn't seem to have as good an effect as (I think) the inflammation is too great for it to absorb properly.

We have learnt that starting salofalk early as soon as a flare up is suspected and cutting out trigger foods entirely for a few weeks can sometimes halt a flare up in its tracks.

When it doesn't prevent a flare up we usually have to go low FODMAP again quite strictly, for us that seems to be the most effective treatment over medication, but everyone's colitis is different.

Hi my consultant was fairly adamant that diet did not help, I think it does when you are flaring, but find once under control I can eat anything.
Medication wise, I was completely intolerant to the mesalazines so eventually started on a long term immunosuppressant - Azathioprine + Oral steroids Whilst flaring.
I currently only flare when I try to come off the azathioprine.
this is a rotten disease to have.

I'm on mesalazine (Octasa) and immunosuppressants (6-mercaptopurine). I don't have food triggers as such, but don't digest some foods like pulses very well. So humous is ok because the chickpeas are blended, but I couldn't eat a dish that has them whole. Although I'm fairly stable with the medication, I do find that if I don't take it properly or run out (6mp is sometimes hard to get) after a few weeks things go downhill so this combo works for me

I know people who do the Specific carbohydrate diet for IBD and seem to feel it helps. Here's an American review article on it if you are interested. It's a very limited diet though, hard to keep up I'd imagine

www.ncbi.nlm.nih.gov/pmc/articles/PMC5821251/

Thanks.

I will be going back to say salofalk granules aren't working. Steroids were mentioned as a possible next step at my last appointment.

My consultant says I should be able to eat anything as it's not caused by food but I am reluctant to do so.

It's such a confusing thing to deal with. What do you all do about going out during a flare? I seem to be spending most of my time at home. Thank goodness I can work from home!!

I’ve had UC for 20 years and have tried most meds. I’ve been on Humira (biologics) for about 5 years which has finally kept flares under control with minimal side effects.

Hi @Theforest

I just noticed your thread because I'm training to be a functional nutrition counsellor at the moment. Your consultant is right in a way about food not being the cause but what you eat will influence your autoimmune response. Have you tried doing an 'elimination' diet to cut out all possible foods that you might have an issue with and then reintroducing them one by one to see how they effect you?

Thanks all. I have been moved onto short term budesonide.

I am hoping my appetite increases and I can look at elimination process if needed.