Colitis and diet

[cakedup]

Ds (21) recently diagnosed with ulcerative colitis and currently experiencing a flare. Main symptom is diarrhoea.

I'm just wondering what experiences others have had in relation to diet - whether it's made a big or little difference.

I wonder if there are foods that might be triggering his flares and would like to investigate this under the direction of a dietician. Any experience of success with this via nhs?

We can't afford a private dietician but would still like to hear any experiences of any success stories. I would even consider getting a loan if I thought it could really help.

Also, I do the shopping and most of cooking at home. Normally a high fibre diet involving lots of veg and wholefoods, beans, lentils - which I have temporarily cut out due to his flare. Its been replaced with white bread/pasta, and increased eggs/potatoes/tofu. I hate having to compromise a healthy diet but don't want to worsen his diarrhoea. Anyone have experience of how much difference it actually makes?

Thanks in advance 💐

Ooh thanks for that, really interesting about the mounjaro....are you sure it's not simply because you're eating less?

I believe my UC was stress related, but actually started once the most stressful period ended.

Absolutely low fibre was best for me. I accidentally triggered flares from trying to eat healthily to lose weight. Things like smoothies with flaxseeds and berries, seeded bread, whole grains, salad leaves, sweetcorn and tomatoes really irritated my gut.

Mesalazine suppositories (salofalk) saved me after years on other meds - mesalazine tablets, mesalazine foam enema, steroids, azathiprine, mercaptopurine. Then, like a pp, mounjaro has been incredibly helpful too, but was prescribed for weight loss and maintenance.

I found the mesalazine tablets taken at night (prescribed as 2 × 800mg, 3 times daily) disrupted my sleep and simply weren't as effective as the foam enema, which was then later replaced by suppositories.

Despite having pancolitis, where it affects the entire colon, the suppositories are enough to keep me in remission. However it took years of steroids then immune suppressants to achieve remission, before the suppositories could take over the maintenance. I can eat most things in moderation now, but do try to stay reasonably low fibre.

No, definitely not.
I tried coming off it and the inflammation was back after about ten days.
It has been absolutely excellent for me and I have never had any side effects.

@cakedup

My son leads a very normal life. He works full time, holiday's abroad and enjoys life.
He went through a really rough time with his crohns in his early teens until they managed to sort him the right medication. He lives exactly the same as anyone his age. He doesn't restrict his diet or avoid places due to being immunosuppressed. He just gets on with whatever he wants to do.
He does make sure all his vaccinations are up to date. If you are on biologics you can't have "live" vaccinations, so if your son ends up on these make sure he is up to date with all of his.
The majority of people lead very normal lives with IBD, relationships and children.

He was on infliximab infusions, but these changed to infliximab injections which he does himself at home.

Steroids can really help in the short term to get the inflammation under control. My son has had a few doses of these over the years. It is very rare that they stay on them long term. It's usually just until they start a longer treatment.

To start with all meds are a bit of trial and error to find the one that really works for you.

I have ulcerative colitis and my experience has been that diet has very little impact. So my main advice would be for you and your son is to largely ignore any advice along the lines of ‘don’t eat x, always eat y’, and work things out yourselves by trial and error.

Diet wise, the only things I’ve found that sometimes makes my UC worse is when I’ve eaten a lot of greasy food in one sitting eg a takeaway, or when I’ve drunk more than a couple of alcoholic drinks.

I suspect my flare ups are sometimes caused by stress, but it’s really hard to be sure. So yes sometimes I’m stressed and it flares up, but other times I’m stressed and it doesn’t!

In terms of medication the only thing that worked for a recent severe flare was daily use of budesonide rectal foam.

Coming back to this. I personally wish I was offered topical meds earlier. They really were the game changer for me.

It's possible that I needed the steroids and immune suppressants anyway, at least in the early years, but I only really started making progress to come off them once I moved on to the foam enema, followed by (much easier and less painful to administer) suppositories.

I was diagnosed at 19 and now am 48, please don’t worry about his diet during a flare you must just not irritate the gut. It’s a temporary thing and if you try to introduce healthy foods because you’re worried it can just cause more inflammation. As far as I can tell it’s stress related and catching a flare early can make all the difference.

kefir is very soothing for my digestive tract and I recommend a plain one, I take 300ml every day and it is definitely the only thing I’ve found other than asacol that helps.

Mainly sugar, fat and fibre is very irritating to me. Also brassicas, onion too.

My flare ups are caused by stress but worsened by diet. Luckily my husband does the cooking so if I tell him I’m not doing great he stops using the foods I can’t manage.
When I’m feeling healthy I can eat anything but during a flare up I can’t eat dairy, high fiber foods, fizzy drinks, a few random items.
I would recommend excluding all foods except something plain like chicken and rice, gradually adding in other foods and seeing what impact they have. Everyone with UC is different so there’s no one cure fits all!
And as a previous poster mentioned, medication is your friend, I’d be very surprised if anyone could pull themselves out of a flare up without some help.

Interesting that some people.get better results with suppositories rather than tablets, that is very useful info, thank you.

Aww thanks for the reassurance @Londonnight I'm really glad to hear about your son. I had a bit of a panic when ds was first diagnosed, imagining he'd end up having to use a stoma bag and all sorts! Hopefully it won't come to that. When he first started taking the meds he got better so I really hoped that was the end of it. I've really learnt through this thread that trial and error with meds is usual so we've just got to be patient.

Thanks...interestingly advice from chrones and colitis uk is to try and maintain fibre in the diet.

Hoping its the same for ds, that he can carry on eating fibrous food when not experiencing a flare.

Another UC sufferer here. I find that for me gluten, onion, garlic and dairy trigger symptoms, but stress and excessive tiredness are bigger triggers by a long way. My consultant has also told me that ultra processed foods cause an issue for some people. I’ve had to make some big lifestyle
adjustments and I’m still learning. Like others here have said mesalazine with topical treatments, enemas etc was nowhere near enough to keep things under control for me. Over time your son might find the same, but there are lots of medication options. After a bad experience with 8-weekly Infliximab infusions (which didn’t help the UC but caused a type of arthritis to develop and I couldn’t walk - not a great combo with 20+ urgent bowel movements a day!!) I’ve now switched to ustekinumab and hoping things will improve 🤞🏻🤞🏻

I got diagnosed for UC in 2008. All now under control and no flare ups for many years. I am on 2 x 1g Pentasa daily and can up them if I feel the need that I might be going in to flare and reduce when feeling better.

as others have said, diet doesn’t play a part with me and though I was relatively going through a stressful time when first diagnosed, there have been many more stressful times since and everything was ok

i did find an interesting article many years ago which was saying that smoking was triggers - they were saying that giving up smoking can trigger you in to a flare up and the smoking was seen to calm it. I don’t know how true this was but at the point of diagnosis I had stopped smoking - coincidence??? Who knows but I wouldn’t advise to start smoking to stop a flare up

My DC was diagnosed 9 years ago, now a young adult. Has been on adalimumab injections for several years and hasn't had a flare up during that time. Doesn't find food/diet makes much difference, but can't drink much alcohol without it having an effect!

Not one diet (dietician led for 4 years) or medication made the lightest difference for dh, except from 40MG and/or IV prednisone. Salofalk foam and granules did provide a tiny wee bit of relief at first. Sadly the GI team at our local hospital are frankly really very shite, "ah well you've tried all the biologics we use so tough shit, byeeee".

After 5 years it was a referral from GP to big city hospital for stoma, where it was found his bowel was literally see through in parts it was that bad, the surgeon kicked up a shit at the local hospital.

He also has steroid induced adrenal insufficiency for life. And two other autoimmune issues. Now granted they may well have happened anyway but strangely came on within 3 months of the colitis, the widespread inflammation is believed to be the cause.

So my advice, be an absolute arsehole if you need to. Stand up and challenge everything and anything.

DS has Crohn's and diet has made no difference to improving symptoms. In fact hes done EEN a number of times which involves meal replacement drinks for 6 weeks.
Low fibre and very little dairy helps him not feel queasy. His iron is regularly low, so red meat is important. Forget everything you think is important for healthy eating, keeping your DC weight up is important and easy to digest foods will help.
Monash Uni do a good guide for Fodmap, but its more an IBS thing.