Do others with proctitis get really painful cramps and nausea??

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I take Asacol and it just gives me more symptoms like nausea and diaherria and frequent trips to the toilet like every 5 mins they have tried me on 2 dif types of the oral meds and the side effects just aren't worth the trouble of taking them.

I stopped months worth of steroids 21/10/15 and exactly 3 weeks after I finished the course my flare up has come back with avengence the cramps in having are worse then labour contractions everytime I have cramps I feel physically sick from the pain and have to keep getting up to go to toilet last night it's was 11.30, 12.30, 2.30, 5 and 6.30 I can't sleep for long cause pain wakes me up and I have to sleep dead still laying on my back or else the pain locks off as soon as I creep back into bed.

I sat in doctors sugary waiting room today and burst into tears cause I felt so ill so much pain dizzy nausea it can't be right to be in the much pain when all I keep hearing is proctitis is the milder form of colitis yet my brother has colitis and the pain I'm in now is what he was in when he first got diagnosed and now he has it under control.

I'm constantly bleeding constantly on the toilet constantly gagging or getting acid reflux I haven't eating in 2 days cause I just feel sick or I am sick.

I was I diagnosed Jan 2014 yet 2015 was when I've had my worst flare ups within 3 mths of each other and only steroids or ibs meds help calm it down.

I can't stand up move drive I have 2 children under 6 and 2 young dogs to are for and I leave by myself and this disease is ruining my life cause I barely have one.

I'm dreading even attempting to go to bed tonight cause last night didn't go well and today all I've been is in pain I drink water it makes me feel sick I can't eat and I just drink some squash and I've thrown it up so now back to sipping at water but getting very dry mouth which is making me feel sick again.


My doctor is useless my consultant I see every 3-6mths just palms me off with yet new stuff to try and nothing is working I can't live like this anymore I have kids to take care of and the only help o have is from my mum but I can't move her in I wish I could how am I supposed to function being this ill is this how it will always be from one month to the next being in so much pain losing so much blood being unable to eat ?

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4 Replies

  • Posted

    So sorry for you. Where in the Uk are you? you need to get to a hospital that knows what you are going through and is up to date about treatment.

    I know St Marks Hospital London and John Radcliffe Hospital Oxford are brilliant.

    Can anyone else recommend a Consultant and hospital?

    I hope you feel better soon.

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  • Posted

     Try low fibre diet, no brown bread, no coffee, no dark chocolate! and probiotics both as a daily drink and one or two capsules every day! Helps with good bacteria Unable to give you brand names as not allowed on this site! Visit health food shop.  Drink plenty bottled water, buy one without additives and never tap water! Camomile tea is great too. I never eat any red meat or stringy veg either! A fasting day once a week helps me too! Good luck, you can't go on suffering so badly!
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  • Posted


    Have you all of a sudden came off medication??

    Maybe you need another colonoscopy for another diagnosis.. I'm sure it can flare or get worse over time

    Thing with UC is everyone is so different but what your going through sounds awful!! The pain your in doesn't sound right... I think you need to get back to the doctors

    I feel so bad for you!!!!!

    I'm so fortunate I don't get too much pain everyday.. Last Friday I was in agony.. When I do its bloated and I feel nausea too and when I'm on the toilet it's agony!!!!

    I bleed every day too it's horrible.. And I'm up through the night too.. Almost identical times to what you are... Steroids are the only thing that stopped my blood but they make me feel wired to the moon!! So I stopped taking them two days ago n suffering at the toilet all night

    I honestly find drinking ALOT of water during the day really helps me

    I pray you find a solution.. I'm 29 married with no kids but I honestly couldn't cope if I was you

    Remember she stay strong... Like you I'm only recently diagnosed but I find if your heads in a good place that's half the battle xz

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  • Posted

    Hi Sam,clearly you cannot go on like this. Can you leave a message for your consultants secretary and ask him for advice? Have you had rectal enemas to use at night? I know the thought of them is horrible but believe me you soon get used to them and they work wonders for the 'urgency ' and blood loss. Could it be you came off the steroids too quickly? I have ulcerative proctitis and suffer quite a bit of tummy cramps but recently started Dicycloverine anti spasmodics which help loads. You cannot go on not sleeping etc so ring your consultant/secretary or IBD nurse if there is one. Failing that urgent docs appointment for rectal meds/steroids? Don't give up, you will feel better but you need more meds? Let us know how you get on x
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