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Autoimmune disease

Possible ulcerative colitis diagnosis - help

14 replies

ImALittlePea · 08/09/2023 14:29

Hi

My DH is awaiting investigation at the moment, symptoms include having regular loose stool (which has apparently been going on since before the start of the year but he's not mentioned prior to it worsening lately), stomach cramping (occasional) and last night, passing some blood (not enough to warrant a trip to a&e). He spoke to a 111 GP who suggested it may be UC and he'd need a full work up via his GP; he has a face to face appointment this afternoon. He has another AI condition, so I'm not sure whether this potentially makes him predisposed to others (?) But I'm preemptively trying to wrap my head around what it may mean, especially on a diet front, as I want to be able to help as much as I can from the off.

I know there isn't one fixed answer to this as everyone's experience, severity and triggers will be individual, but can anyone tell me how they manage their diet if they or a family member have UC? Meals, drinks, what to avoid, can alcohol be drunk (in moderation) and so on?

Happy to provide a rough outline of what we currently eat and drink if it helps.

Thanks.

OP posts:
70Cats · 08/09/2023 16:15

Go on line to Crohns & U.Colitis society for up to date information. Join the local group who have regular meetings. Only take advice from experts. There are lots of good treatments for this condition. Good luck.

ImALittlePea · 08/09/2023 22:41

Thanks @70Cats of course we've looked at the website, and will join local support groups if the diagnosis comes through. Its all very high level and generic on the society web page though; at this stage I'm just trying to wrap my head around how this becomes reality for those who have UC, that's all. How much will his/our current lifestyle change if the suspicions are correct, for instance.

OP posts:
Mrburnshound · 08/09/2023 22:43

A family member has had it for over a decade. Has to watch their diet but still able to eat a variety of things. Alcohol still drunk but only once per week

GrannyAchingsShepherdsHut · 08/09/2023 22:52

You're right in that triggers are different for everyone, alcohol generally is advised against.

I found personally that caffiene was a major trigger for me, couldn't have coffee or coke at all, effects were almost instant.

What would probably be best would be for him to keep a food diary and see if he sees any patterns showing common triggers.

For instance, when I was really poorly I would live off plain white rice and mashed potato. I recently met a woman who, if she ate white rice even when having no symptoms, she would be guaranteed to go into a flare up.
It really is that different for everyone.

Stomacharmeleon · 08/09/2023 22:53

@ImALittlePea it all depends on the diagnosis and the severity.
I have crohns. Have a colostomy and have had several operations. I have it severally and other related illnesses- short bowel and dumping syndrome. I also have other auto immune conditions. As a result I am seen and operated on at a specialist hospital in London.
I am teetotal.
I know what I can and can't eat. I follow a low residual diet (white and carby)

ImALittlePea · 08/09/2023 23:02

Thank you @GrannyAchingsShepherdsHut @Mrburnshound @Stomacharmeleon I've told him to keep a food and poo diary but it'll take time I think. From what I've read, it seems his symptoms are relatively mild so far, although worsening at the moment, and the doctors are taking investigations seriously which is of course worrying us. Obviously we will do whatever is necessary to prevent him being unwell as this unfolds, but there's a (selfish, I know) part of me that feels a bit mournful about the possibility of our prosecco nights (for instance), Saturday nights in with delivery pizza, etc, never happening again. Fwiw, these are rare; he drinks alcohol maybe once a week, and has a much better off-switch than I do.

OP posts:
HGC2 · 08/09/2023 23:17

I have chrons which is similar and after surgery I can eat and drink everything, getting the right treatment is key

mrsfollowill · 08/09/2023 23:37

DH has UC and has had it for the 30yrs we have been together. His is well controlled with drugs.! On Azathioprine (low dose daily) Triggers are beer (vodka and coke is OK though!) red meat, spicy food- a curry wipes him out- loves the taste but 2 days later- well not good!
Best he has ever been was when , by chance we had chicken/fish/well cooked veg/no spice and very little alcohol for a week. Tends to have a 'bad day' now and again these days (once a week- 'normal' the rest of the time).

We still live life to the full- we both look where the nearest toilet is wherever we go though. Book afternoon flights when going away as he is worse in the morning- get seats near the loo on the plane or train.
Sounds like you are in the early stages - get a radar key for toilets in the UK.
There are a lot of drugs that help massively- at one stage many years ago DH had to stay off work for around 3 months and lost 3 stones in weight- was very ill but once properly diagnosed and prescribed the right meds soon got much better- you learn to live with it.
People don't realise how painful and debilitating it can be. He will probably need B12 injection every 10 weeks or so and supplements for vit D and folic acid. You do not absorb these normally - when his B12 is due DH is so tired, clumsy and forgetful. It took ages to put the pieces together. Couldn't sleep either despite being exhausted. Pm me if you have any questions😀

Bitteralmond · 08/09/2023 23:38

I have ulcerative colitis. Alcoholic drinks, especially wine and beer tend to cause a flare up. I tolerate white wine better than red wine.

For me red meat can sometimes upset my bowel, especially when combined with pasta. Tuna fish is another no no. Different people react to different foods, but I discovered that all the foods I react to are high in histamine.

I have started the keto diet this week, and that has caused a flare up - toilet bowl full of blood today. Too much meat for me I think. I seem to do best with rice based meals.

Your husband will soon notice what causes problems and learn to avoid/moderate intake.

goingtotown · 08/09/2023 23:49

A friend has an Auto Immume condition, rheumatoid arthritis, she's just been diagnosed with Microbotic Colitis.
She's had several colonoscopy's over 2 years that showed her bowel clear.
Microbotic Colitis can only be diagnosed from a bowel biopsy.

Goldrill · 08/09/2023 23:50

I have UC. Currently on steroids to control a flare I barely knew I was having - just picked up from tests. I've just had a takeaway pizza and half a bottle of wine and no chance of any problems. Food doesn't affect me, but lack of sleep really, really does. That said, I do generally have a fairly Mediterranean diet, which is what is recommended and I believe has some weight of evidence behind it. I also do quite a lot of exercise and that definitely helps me.
The crohn's and colitis Facebook page is excellent. I know I'm very lucky that mine is moderate and well controlled. Not wildly keen on all the colonoscopies and blood tests and things, but understand they're keeping me healthy.

User657891 · 23/09/2023 15:03

My dad has had UC for 30+ years. No effect on his diet at all.

I have Crohn's and it also has no effect on my diet. If I'm flaring I'm in pain whether I eat or not.

Remmy123 · 02/10/2023 20:20

My son has UC so far he can eat what he wants - he is in remission though and has a very active normal life.

INeedNewShoes · 02/10/2023 20:29

I would counsel against joining the Facebook groups. They paint a bleak picture as 95% of posts are from people who are currently suffering so you'll come away thinking this will be DH's life from now on.

You'll still have your prosecco and pizza nights. Don't throw the baby out with the bathwater!!

I have ulcerative colitis. I've had long phases of remission (years) where I've been able to eat and do whatever I please. Even in a flare, for me, life doesn't stop. I just plod on (despite some of my flares being categorised as 'severe'). There are choices to be made about approach and I worry that if people read the accounts of prolific posters on Facebook groups at the point they're diagnosed it will set you off on the path of thinking that life will never be the same again. I eat what I want, I do sports, I have a busy work/social life.

There is increasing evidence that a mediterranean diet is clinically beneficial for lowering gut inflammation measurably in people with IBD so don't take too seriously all the stuff about low fibre diets (though this can be useful as a very short-term measure to improve symptoms on a short-term basis).

As mentioned by a PP, sleep deprivation is a trigger for me so I've become much more disciplined about trying to get a good night's sleep (difficult as I'm naturally a night owl).

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