Just been diagnosed :(

Posted , 11 users are following.

Hi guys, after spending a week in hospital I've been diagnosed with Ulcerative colitios, I've know been out hospital a week and really don't know how you have all coped I'm feeling so alone and like I have no one to speak to but I know there's millions of people suffering too. How have you got through this?

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  • Posted

    I'd like to add I'm only 22 and my constant fear is how much it's going to effect my life.
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  • Posted

    Hi Kirsty

    Sorry to hear you have been so unwell.

    How long were you suffering?

    You MUST talk to people.. I have found with having UC it affects your mental state just as much as your body. You should try and read up as much as you can online about UC.. However I'd try and scroll to the positive posts as a lot are very negative!

    I am 29,married with no children.. I have a great life,good holidays, fantastic husband.. But I ended up on anti depression tablets. (I am now off them!) I just couldn't cope with my feelings I felt like my head would explode..No one understood what UC was and I felt I had nowhere to turn. My mum and dad are i denial .. I haven't told any of

    my friends!

    Talking is the best therapy you can get.

    I was only diagnosed in January and need another test as it could be but hopefully isn't crones.

    I think you need to keep your mind active and try not to let it take over your life!

    I am on mezaline and saloflak foam which

    make me constipated therefore im not using them this weekend!

    I always try and tell myself ghings could be much worse and now im glad I know why I'm so tierd all the time! It also explains the blood.

    I don't know how it affects you in later life.. I am just dealing with it day by day.. Some people take years before they get a diagnosis I am just thankful I got mine early and can start to control my life again.

    Xx

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    • Posted

      I was loosing a lot of blood from November, the doctors actually said it was piles, then come January I started getting really bad stomach pains that would bring me to tears and bloody diarrhoea I knew something was wrong, I went back to the doctors had blood tests on a Tuesday was waiting for the results but then things got worse I started to throw up anything I ate or drunk so I had to go to a polyclinic on a Sunday which refrereed me straight to the hospital. Got kept in for the whole week, had the most undegnified week I found out I'm anaemic and I had the sigmoidoscopy (flexi camera) which showed UC. It was such a shock.

      I am now on steroids prednisone, mesalszine, lansoprazole and adcal calcium. Also getting sent for a bone density scan apprently this thinnings your bones, and have to have the other camera colonoscopy to check how much it's affected me.

      That's something I really don't want to end up on anti depressants, I'm glad your not on them anymore and your life seems to be going good. I hope it's not Chrones!

      It deff does effect your mental state aswell I've sat here crying for the last couple hours, It's right to take it day by day as you never know how your going to feel from each day, I needed to talk to someone whose going through the same as it makes you feel less alone. Thank you for this. I'm glad I've found this website.

      I do use Google quite a bit it can be very negative though. sad

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    • Posted

      Hi kirsty

      NEVER Googleeek you will make yourself feel worse and it is negative tripe anyway.

      Colitis UK are great for when you have a rubbish week, they have a fab helpline and website. I was only diagnosed in November following time in hospital and it is rotten to have a silly colon that won't work. rolleyes

      I too am anaemic and knackered all I do is sleep (would get a gold in the sleep olympics). Are you on an iron rich diet yet? I am by dietician, you will be pleased to know chocolate contains iron (dietician said) - wahey!! So that's something good at least!!cheesygrin More yummy chocs to guzzle.

      You can always post on here I know how it feels to be anaemic and feel yuck/rush hour to loo. It helps on here as everyone understands how rubbish this thing is.

       

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    • Posted

      Hi Metaxa,

      Lesson learnt Ive read some terrrible stuff on google sad

      Yes that website is good. sorry to hear about that, how are you coping?

      It is a mare being anameic, and not knowing how your going to feel from each day. Ive had 2 really good days now but i dont want to speak to soon haha.

      Nope havent been told do go on an iron rich diet. im trying to work out what foods i can toleralte. mmm chocolate sounds good right now.

      Its nice to know that people feel the same.

      whats your next step?

      xx

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  • Posted

    Hi kirsty,

    Really sorry you are feeling so low

    First of all don't google other peoples stories. They will only make you depressed more.

    I was 16 when I collapsed with a clot in my lung and in hospital I just happened to mention I'd have diarrhoea for months and months with blood and mucus.

    Anyway, they diagnosed uc. My bowel was about to burst, either that 1st or my lung

    .

    All caused by uc.Spent 2 weeks in hospital.

    Miraculously, I recovered with the grace of god and I am here today 16 years on.

    Its not been easy. But for 10 years I was in remission. Its the last 3 years or so that its been playing up again.

    But my health is quite complicated.

    I am also anemic regulary as the bowel doesn't absorb iron the same. And the loss of blood adds to this.

    Fortunately I have a lovely partner and family who support me.

    I also have a one year old.

    My dad and brother didn't believe me when I was 1st diagnosed. But they do now.

    Its an embarrassing illness but you would be surprised how many people have it.

    I've learnt not to be embarrassed now.

    You must tell your friends, well any close ones. You will need them in times like these.

    You can also go to support groups, check the NACC website. That's also excellent for info.

    I also have a fantastic Consultant.

    Don't ever hide anything from them or your family.

    I hid my disease for months, due to embarrassment, which was very silly, as it nearly cost me my life...

    We are all here on the forum if you need to talk. We are sufferers too, so we fully understand. Don't worry about the rest of your life. Take each day slowly.

    You can have a normal life.

    Take care

    Claire

    Xx

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    • Posted

      Thank you for your reply,

      That's great that you aren't so embarrassed now, as it is a very embarrassing illness sad

      Can I ask how your pregnancy was? Did having uc effect it much? I kinda worry about this.

      Thanks for the advice I'll check the NACC website.

      It's nice to have people to talk to who are going through the same i don't think its the same talking to someone who hasn't gone through this as they really don't understand what we are feeling deep down.

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    • Posted

      Hi kirsty.

      Must admit that my pregnancy wasn't great.

      My baby is and was fine. But due to my history with uc and blood clots they monitored me a lot more closely.

      I had more scans-which was a bonus, but due to the constant anaemia,I had lots of blood tests and 6 iron infusions-which I hold the record for there..

      I had diarrhoea the whole way through but they gave me steroids and blood thinners.

      People with uc tend to have smaller babies apparently. My baby was just under 7lb, well looking at me you would think she would be bigger.

      She is absolutely fine tho.

      Labour was induced as the added stress on my body could have made uc worse.

      But to be honest, I've heard a lot of people say that the symptoms go away during pregnancy.

      Everyone is different.

      Depends on the severity of the uc and other factors, such as surgery etc. Fortunately I haven't had any.

      Um holding on to my bowel.even If its faulty.

      How are you doing at the moment? How r ur parents?

      X

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    • Posted

      Hi claire,

      Oh sorry to hear you had trouble with your pregnancy. Oh that's interesting I wonder why they are smaller I'm only 5ft so im sure I'll have small baby's in the future anyway.

      But knowing my luck I'll prob have a bad pregnancy too, although I have years for this but it is a great concern to me I read a story where a lady was told she couldn't have children but then a miracle happened. It's a scary world.

      I will be holding on to mine for as long as possible too.

      I'm okay, It doesn't help with my home situation though my mum and dad are going through a divorce sad

      how are you feeling x

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    • Posted

      Hi kirsty

      I'm ok thanks.

      Fed up of being anemic.makes me feel awful.

      I'm 6 foot and curvy and I thought id have a heavier baby.

      But no.

      But I'm glad because she was easier to give birth too.

      My parents split up and then a few months later I was diagnosed. I think it was the trauma that gave it to me.

      Then dad died 4 years ago and it set me off again. Hasn't been the same since then.

      But having the little one and my partner keeps me going when I'm so low.

      Stay strong.

      Xx

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  • Posted

    Hi Kirsty

    I was diagnosed with UC about 8/9 years ago. Going through a flare just now - and have bladder pressure, frequent urination and a bloated looking tummy this time (never had this before) Waiting for a colonoscopy app now. When I was pregnant, my UC disappeared, which was a bonus 😀 I find food and diet dictates the severity of my UC, which is mild in comparison to others, so I'm lucky. I control mine well through diet mostly. I remember the awful pain, blood loss and bewilderment when I was first diagnosed, so I empathise with you. You are not alone and there is plenty support, advice and understanding here and out there. What's next for you? Let us know how you are getting on x

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    • Posted

      Hi Carla, before I was diagnosed I used to very bloated all the time it was horrible! Hope you get better soon.

      That's good about your pregnancy.

      I'm eating healthy and I've started gluten free diet I'm not sure if this helps yet but I've read a few people who stick by it.

      Are you waiting for an appointment for colonscopy or got one booked?

      At the moment I'm on ascol, lansoprazole, prednisolone and adcal calcium these are going to be reviewed end of the month and I also have a bone density scan on April 2nd then ill be waiting for appointment for the colonscopy too.

      Happy Mother's Day to you.

      Take care x

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    • Posted

      Hi Kirsty

      Thank you for the Happy Mother's Day greeting - very sweet 😊

      That's interesting you got bloated too. I wonder what causes it? Inflammation I guess!? Was yours constant until diagnosis and meds? 

      How are you getting on with the gluten free diet? In my opinion, diet is so important when managing UC. Funny thing is my UC flare seems to be improving the last couple days, although I still have the bladder pressure and frequent urination and can feel my bowels dancing about abd making funny noises 😁 

      I am waiting for a gastro app and abdominal app first - will then discuss colonoscopy with gastro. I'll keep you posted.

      How are you feeling this week? Let me know how you get on its your appointments too - wishing you the best of luck with it all x

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  • Posted

    Hi

    Just so you know you are never alone. Uc is difficult becasue unlike breast cancer and many other illnesses and diseases it just isnt very attractive, there isnt a pretty badge peolpe can wear and people find it very difficult to talk about, well sh*t to be honest. We are all animals and this is what we do. I have only found this site recently after 20 years or so of UC and major surgery, you are definitely in the right place. You must talk about what is happening to you, I didnt for a long time and my mental health really suffered. The thing is you will cope with it, you have already made the first step and asked for help, you will be tired and it will be difficult for people close to you to understand what it feels like to not have control over your own body. It may seem right now that you have just recieved a life sentence and you are probably feeling a bit sorry for yourself. Thats OK you know. It really isnt fair and most certainly you havent done anything to deserve UC. The good news is that you are going to discover that you are significantly stronger than you think you are right now. You will learn how to manage your symptoms, you will learn which medication helps and which doesnt you will learn which foods you can tolerate and which you cant and you will learn most importantly that UC is not who you are, it is not the whole of you.

    Life will be a little different but you can do all the things you want to do, you can still have kids if that is what you want to do, I have 2 and they save me everyday.

    Enjoy the days that you feel well, talk to your friends, get a good relationship with your GP, do not suffer in silence. Please take care its going to be ok. 

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  • Posted

    Hi Kirsty and all UC sufferers here.

    That's interesting re the iron diet you aren't on it as I now have to combine that with a low fibre. Still the liquid iron tastes nice - strawberries, so that's something, heart still a pain today clicking out and nausea after eatingrolleyes

    Next step was the surgery, had my pneumonia jab today (boosts my immune system apparenty) oh the shame!!redfaceredface Felt awkward going in as they had ordered the jab for me only. Nurse confused I am not over 65, I don't have lung trouble but notes said I am more vulnerable to this with UC so there you go.

    Then it's heart monitor results for following week and I am having a chat as someone mentioned my 4g dose and why it's been whacked up so highconfused haven't a clue!! There's nothing of me and it is really making me feel extra yuck. It hasn't got rid of flare up totally either.

    Plus a blood test scheduled it is IBD Infection Prevention Screening (form is in front of me) they are doing some thingy or other with that.confused

    So that's where I am up to at present keep you posted what all that means. As I am still learning - wish there was a UC manual!!

    Take care all

    Metaxa x

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