I've been diagnosed with UC Help

Posted , 12 users are following.

Hi everyone,

I have 2 weeks today been diagnosed with UC after having sigmoid. I haven't yet seen the consultant, but he has put me on this medication. 200mg pentasa 40mg predisolone and calcium supplent. I gave up smoking 18 weeks ago then 9 weeks ago I started having these horrific symptoms. Blood loss, mucus. Diarrhea, fatigue, temperature, rash on legs and this horrible poorly feeling. I have been of work 5 weeks and wanting to get my life back on track, but this disease is taking hold of my life. I just about get out of bed some days never mind work. I have noticed a few foods that upset me so have removed them from my diet and started myself on a few superfoods. To my fellow friends any help or advice would be appreciated

Thanks Sam x

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20 Replies

  • Posted

    I've had UC 8 years now Sam...what is it you need to know, I will try and help you...its still a minefield for me :-(
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  • Posted

    Hi Sam I also gave up smoking 18 months later also have uc I am on the same meds as you.

    They take a bit of time to kick in but they do work I also was feeling like you. Foods to avoid I find wheat doesn't help me at all caffeine also.

    Hope you feel better soon.

    Dan

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    • Posted

      I was told I had piles back in Dec 2014 which I didn't think it was right. So was having blood / mucus / and pain. I went back to doc after having symptom till March. I have uc in the lower part of my colon & sig colon.

      All depends were your uc is. I found that mornings were bad for me going for the first bowel movement and after I felt so tried I could go back to bed. I didn't really take time off sick as I am in sales and the company I work for let me work from home on the days my flare up was really bad. The meds do work I have been on then now for 6 weeks only now noticing a difference. I am not were I was before uc but don't think I will ever be. Us just learn to live with it and try different foods and avoid the foods that course flare ups and Try not to get stressed.

      cheers dan

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    • Posted

      Dan,

      you also only recently found out too. I'm a a care support worker in the community and popping off to the loo doesn't really bode well. As well as the fact I just feel wiped out pretty much all the time. I too was told 9 weeks ago that I had piles, was given suppositories. Creams etc, untill I just couldn't work any longer. I went to a&e and it then was suspected UC. Flowing this i had flexi sigmoid. 3 weeks later to confirm and here I am.luckily I have already noticed s few foods that create havark, do steering clear of those. Is there anything else that will help make me feel better?

      Sam x

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    • Posted

      It may be the meds are not for you and your doc may put you on different ones. I am still learning to deal with uc at the moment I can go 4 days feeling ok thinking its under control then bang flare up. For me getting it confirm what I have was a result and I felt better and the worring stop. The more you get stress and worry this will Definitely effect our uc. I am going to look into stress classes hopefully this may help me deal better with stress. I have cut out all wheat from my diet also only drink lac free milk.

      Some people need fibre to help there uc and some have to cut out fibre as it makes it worst. If you Google uc and food it will give you a list of foods.

      Have you got any one else in your family that has got uc my sister has so I was at a higher risk of getting it. My sister has had it for 12 years she is 42 I am 40 she got it when she was 30. I got it at the age of 40.

      It will get easier Sam you just have to go back to basics with food do a food dairy.

      Hope you feel better soon

      Cheers dan

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  • Posted

    Hi sam- feel for you.

    I've had it 16 years at the moment and I'm praying it will go..

    Been awful lately..

    Everyone on here is great..

    So ask anything. Don't be embarrassed. There is nothing we haven't heard before.

    😊 xx

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    • Posted

      Hi Claire,

      sorry to hear you have suffered For a long time and of late with UC. Over those years how long have you been in flare ? I guess I just feel so overwhelmed.thanjd Claire

      Sam x

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    • Posted

      Hi Sam.

      Well, I was really ill the 1st 2 years or so and trialed a few meds until a couple worked (azaphiaprine and asacol), then I was in remission for about 10 years, then my dad died 4 years ago, it started again and hasn't been right since.

      But dont be scared of it- I don't help myself sometimes. Eating the wrong foods etc. Had loads of courses of steroids and anaemas and camera jobbies..

      Seeing my consultant Thursday who is brilliant to see if I can try new meds to calm it down.

      I've had months off work. Not working now. Just too ill...

      Had a clot in lung too, my second. All caused by the colitis.

      But everyone is different- so please dont panic.

      You have to alter your life slightly, butyou Lear to cope your own way.

      I'd recommend joining the NACC. national association for chrones and colitis.

      Very informative.

      Hope this helps...

      😊 x

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  • Posted

    I recommend a low fibre diet! All the healthy things I've been eating for the past 20 years have been killing me! Low fibre and periodic fasting is the only way I get thru UC! I suffer the same symptoms but have learnt how to combat them and have good and bad days! Good luck with trying, but stay positive ! Have heard of other smokers suddenly stopping and UC rearing its ugly head!!!
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  • Posted

    Hi Sam,

    There is a connection between packing up smoking and developing UC. I packed up smoking 3 years ago now and 2 years later i developed UC. Ghastly isn't it and so life changing, so much so it has put me out of work too. I work in the construction industry and the loos are far from where i was working, anyway not being in control of my bowels i was having to rush to the loo sometimes twice an hour which is not fare on my fellow workers having to dissappear for 15/20 mins at a time for 8 times a day, plus i messed myself so many times where i did'nt make it in time. Anyway i messed myself just one time too many and decided i could not carry on doing my job because it was just to stressfull worrying all the time about messing myself. Unfortunatley the meds arn't doing it for me, im on steroids and sufasalazine plus i was on masalazine and a year later im still having to rush to the loo. I cant stand this life of not being in control as i said its Bloody..... and i mean Bloody life changing. So....... the connection between smoking and UC! Google search "can nicotine cure colitis" have a read and make up your own mind. Chat soon.

    Terry x

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  • Posted

    This will sound like rubbish quackery but I promise its not - my dad has this and under the advice of his doctor has resumed smoking.

    Hes found that one pipe of tobacco every other day has damped down his symptoms enough that he has actually been off almost all other meds for the last 20 years.

    Ive just recently also been diagnosed with UC and if my currently mild symptoms progress over the years, this will be one of the things I try, im a life-long non-smoker.

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  • Posted

    I've recently been told that nicotine can be a help to UC sufferers. As a life long non-smoker myself, after almost 4 years suffering from UC I am considering nicotine patches!
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  • Posted

    Hi All,

    So I am new to these forums and I'm not sure how to start. Anyhow let me try. I am female 28 years old, do not smoke or drink alcohol. Admittedly I have never had the best diets. It started a few years ago and I recall starting to take some vitamin tablets. I found one night that I had severe back pain that came around to my abdomen... It stayed all night until the early hours where I could finally sleep. I stopped taking the vitamins thinking they were the cause. Since then every other month this pain came about and it would usually last for a couple of nights and would then go away. I went to the GP and as expected they said it was IBS. I didn't dwell on it too much as the pain was not frequent and I felt as though not eating helped the pain somehow. This year February I had two incidents of diarrhoea and vomiting with severe stomach pain. GP did tests and found I had h pylori. I was given the triple therapy medication for this which knocked me out. I was in bed and constantly needing to go to the toilet. The GP advised that I finish the treatment. Since February I have not been right. I have persistent cramps and there is no rhyme or reason for this. It has taken over my life, I have lost over a stone in weight and again went back to the GP and demanded to know what was going on. GP continued to think it was IBS but it was the locum Doctor who thought I might possibly have IBD. I gave another stool sample which came back positive for inflammatory bowel disease. To some extent I was relieved to know the cause of the pain and I still don't think this news has sank in yet. GP seemed to think I have UC and has referred me to the specialist. I am not seeing the specialist until the end of June 2015. Subsequently I went to the emergency doctor because the back pain returned more severe and he seemed to think I have crohns. I continue to get cramps every day and I don't mean to sound ungrateful because I know it could be worse but I am utterly fed up. I stay in bed most days because I don't have the energy or the appetite. Sometimes the eating helps and at others it triggers it. I go to the toilet once or twice a day and there is no blood in my stools. Main issue is the stomach cramping... I asked if they could somehow quicken the referral and their response was no. I genuinely feel as though I cannot wait until the end of next month just to be seen by the specialist as I presume after this he will do a colonoscopy. I have enquired about going private but the cost is too much. I am currently off work and just feel overwhelmed by all of this. And they have prescribed me buscopen which doesn't help whatsoever.

    Any help and advice would really be welcome :-)

    Apologies for the life story

    Saima

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    • Posted

      Hi,

      Sorry to hear about your issues. I would recomend the SCD(Specific Carbohydrate Diet) diet for now, it's a big help for those with UC and Crohns even if you haven't been 100% diagnosed it may help.

      It can be a frustrating condition especially at the beginning and GP's do not always have the best knowledge of the condition, I've educated my GP about a lot of things to do with UC but once you get to a Gastroenterologist they are far better equipt to help you out.

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    • Posted

      Hi Saima

      I'm also new to these forums because I've never really needed to use them before but since I've been diagnosed with UC recently I feel I need to turn to people in my situation to cope with this.

      When I read this post of yours, it just bought back memories of my suffering in the last few months because of my GP. They referred me to a specialist and didn't even give me any pain relief and sent me on my way; bleeding like there's no tomorrow and I can't even describe the amount of pain I was in. All this and having to bring up my baby.

      I think you are being fobbed off just like I was. I'm sorry but if it is UC then it's going to get worse; trust me I know because I was put into hospital and that's when they eventually confirmed that it was UC I had. This was back in February 2015 and the referral from the doctors didn't come through until end of March by which time I was already on the meds to try and control the flare up. Since, I've had another flare up and so I am in a lot of pain and beginning to think I can't cope with anything because I feel so ill especially with the demands of every day life too.

      You need to go back to your GP. Demand that they send you to get checked for it as a matter of urgency because the sooner you know the better it will be so you can manage and control it now before it gets worse. You need to understand that it will be you who has to deal with the consequences not them; you have to live with it not them so it's better to know now.

      I hope that you get seen to asap and the results be negative for UC because it sure is life changing.

      Sam

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    • Posted

      Thank you Tony

      I appreciate your advise, I will definetley look into into the SCD.I just wish that it gets better for all the people suffering. My hopes are with the specialist.

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    • Posted

      Thank you Sam

      I'm sorry to hear that, I can't even imagine especially with you having the responsibility of a child. I am very fortunate I live with my mum and bless her she's been taking care of me. My main symptom is the severe stomach cramps and I can't even cope with that. I just keep telling myself that it could be worse.

      I go to the GP and honestly feel as though they don't do anything other ask me to take buscopan and wait. He said the only way we could fast track a referral is if they suspected cancer. I didn't know what to say to that. I'm trying my best to deal with it, but don't feel as though I'm getting anywhere.

      Hope you feel better.

      Saima x

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    • Posted

      If things get worse it might be worth going to A&E at your local hospital. That might force their hand and get you to see someone quicker.
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    • Posted

      Hi Saima

      You need to go to A & E. You cannot wait because it is too risky.

      8 weeks ago I ended up going to A & E and was told by gastroent specialists that if I had waited any longer my bowel could have perforated! As it is, the sigmoidoscopy done the next day showed widespread, deep ulcerations right up to the mid section. I cried.

      Background...After stopping smoking (yes, me too!) Jan 2014, I started getting mucus, blood and urgency/constipation, at the same time as getting a tooth infection and being given antibiotics. I had a colonoscopy in April andwas diagnosed with proctitis (only rectum inflammed).  Fast forward to beginning of April, wisdom tooth out and abcess found andgiven more antiobiotics (I told the dentist that something was wrong but he ignored me - I believe I had the abcess since the first infection - didn't hurt because it was able to drain apparently). Anyhow,I became seriously ill and blamed the antibiotics. Then couldn't eat and lost 7+ kgs (Never been not able to eat in my life!) At 2 week follow up/stitches out, dentist said it's just the antibiotics,you'll come right. By 4th week, still not eating, horrendous pain, masses of bloody etc - symtoms at their worst. In hospital next morning with intravenous cortisteroids, saline and electrolytes put in asap. In hospital for 8 days!

      If you are developing UC or Crohns you must be treated now or risk losing your colon and rectum.  I want to add that I'm concerned with the serious pain you are having, yet you don't have bloody diarrhaea numerous times a day? My serious pain was primarily connected with any bowel movements. You may have something else going on as well as IBD??

      Just get on down to your A&E. It is your body and you need to stop any further damage before it is too late.  Sorry to scare you but I realise how lucky I am to have said to my husband 'Bill, I don't feel right. It's not the antibiotics, something is wrong'. And off we went.

      Helen

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