What does remission feel like

I was diagnosed with UC 4 weeks ago today (I'd been sent for a colonoscopy due to rectal bleeding). The colonoscopy brought on what I now know is a flare up.

Because a lot of the symptoms of the flare up have calmed down now, although there's still lots of colonic gurgling etc., I'd like to know whether this is as good as it gets when you're in remission. Or could it be that I'm not yet in remission?

Any help and advice you can give me would be greatly appreciated.

7 Replies

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  • Not sure anyone can give you the answer as everyone is different. I've had uc for over 30 years but in remission for the last 18 years, for me that means no symptoms at all, may get the occasional blip but I just up my Asacol dose and back to normal within days. If you can get on a medication that works for you then you will hopefully be fine.

  • For me it was cyclical - flare, suppress with Meds, then remission. The flares would last longer, the drugs would increase, the remission periods decreased. But that was me, everyone reacts differently - especially dependant on the wide range of medication available.

    Ultimately, I had surgery a number of years ago, but the symptoms returned a few years after (maybe never left - hard to tell with all the post surgery stuff). My symptoms are now constant, but again, that's peculiar to me.

    So, the colonoscopy would have aggravated things, but if it's all calmed down and your symptoms are managed, then the drugs are taking effect. Usually they will give you a duration to take the drugs for - this is so it ensures everything is calmed down. As many treatments are steroidal, they take time to build and stopping the day you feel better is portable not advisable. Stick with the course.

    Having been diagnosed, your hospital should have a UC/Crohns specialist and probably some support nurses - they are the experts and can give you all the info.

  • Hello shoeysmum, we've talked before...about metformin I think?

    Anyway, I've had UC/Crohns for about 30 + years, with lots of associated probs along the way, had a hemi- colectomy 20 ish yrs ago , adhesions, fistula, anal repair all sorts, the gurgling and flatulence are part and parcel I'm afraid, that doesn't mean you can't do a lot to help yourself, bearing in mind everyone's individual and what suits one might not suit others, I took mesalazine for years, relied on it, had to stop recently because it impacts on another issue, but amazing stuff comes in lots of forms and brands, I've used tablets, sachets of slow release granules, I do still use home administered enemas for when I bleed from my rectum, they are unpleasant but realyreally work.

    Stay well hydrated, watch your fibre intake when you're flaring, I kept a food diary for a long while and it highlighted a problem with lactose and also the Rennet that's used in cheese. I was given a diet created by Addenbrooks by my dietician, compiled by their specialist unit so you could ask for referral to dieticians. Basically it's no seeds pips or stalks, but DO use water soluble fibre.

    When I get really noisy and my tummy is distended and playing a symphony, I use over the counter wind ease, find them better than rennys, also buscopan reduces spasm, get them on presc. Also Loperamide helps with diarrhoea and bloating also on presc.

    Used to use colpermin but they make me smell like a polo mint, even my skin so although peppermint oil is useful I can't use.

    These are only my standby's others will have their own , and it's a bit of a process of trial and error really, try not to get too stressed over it, you WILL get there and stress causes acid which causes flares.. ... oh and another one that I do sometimes use but don't like much is bicarb and peppermint cordial, makes you bubble like a kettle for a little while but then breaks it up and helps it dissipate, they used to give it in hospital for the burgled and bloating after gut surgery.

    Well my love, this has been a bit of an essay so sorry for that, good luck and hope you find your own way, chin up xx

  • Hi Ccupcakes

    Yes, we have spoken previously about Metformin.

    You've given me lots to think about here - especially the water soluble fibre which I googled. Having T2 diabetes I'm on the LCHF diet and so have been trying to avoid things like brown rice, pastas etc. but I shall definitely be re-introducing them now.

    Thank you so much :)

  • Sorry last paragraph should read Gurgling ...... Not burgled!

  • LOL x

  • Hi

    Everyone's experience can be different, but in my experience when you get to a place of "remission" you can have little to no symptoms.

    I was diagnosed in 2014 but suffered for many years before.

    The best advice would be find a good specialist who understands your condition, I have a nurse and doctor who are specialised in UC so any signs of a flare I go straight to them.

    You will start to learn what works for you, medication, what food to avoid etc..

    It does get better!! :)

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