Just joined

[Grumbletum]

Hi I've never joined a forum before, but I'm newly diagnosed with crohns and colitis and have a million 'is this normal' kind of questions.

About me...I was taken to hospital in the early hours of the morning after a week of tummy upset and agony. I was passing blood and mucus and my tummy was distended and painful mainly lower right sided. I thought I was being a drama queen going to hospital for what I thought was a tummy bug seemed ridiculous but I couldn't cope so swallowed my pride and went. They did a blood test and panicked to find me a bed in majors. Gave me drugs and I felt fixed, I thought I was going to be told off for causing a drama and wasting time. Saw a surgeon who wanted to check with an xray so went and back in 5 minutes, then he says just a ct to check your appendix. Ct was done so quickly and straight back. The surgeon says I'm handing you back to medical team its colitis and you just need some medication. Brilliant, I think I'll be home in time to make breakfast.... Er no. I was admitted and spent 4 days on steroids and antibiotics and of course pain relief. I had a sigmoidoscopy and got a definite diagnosis of crohns and ulcerative colitis. As a side note I also have a left sided adenaxial mass around 4cm. So had an ultrasound and have an endometrioma which needs surgery hopefully in October. It was a few days to my sons birthday ( he's autistic and was not coping with me being away) so was forced to insist on being discharged my crp was 169 when admitted and was down to 17 I figured I'd be fine. Wasn't actually very well and have been struggling ever since. Been back a couple of times and now the specialist says steroids and pentasa are not going to manage it I need to consider having drugs to reduce my immune system. To be honest I'm overwhelmed from a tummy bug to this!

Apparently I'm still having a flare and have lost 2 stone since this began, I never thought I'd ever want to stop loosing weight but I do.

I'm suffering from extreme fatigue and have hyponatremia and dehydration and am having to see cardiology because my hearts racing. I've had enough now.

Tomorrow is a new day, and I'm going to be better.

That's me x

[willow24 Administrator]

Hi and welcome.

Sorry to hear you have been having such a rough time. you have come to the right place to get a better understanding of crohns and colitis. we all have different experiences and its good to share with one another and offer support also.

the crohns and colitis uk site is also very useful crohnsandcolitis.org.uk. they have lots of information leaflets on crohns, colitis, medication etc

[Grumbletum in reply to willow24]

Thanks, I'm OK just bored with the exhaustion and thinking of redecorating the downstairs toilet ( which has been designated as just for me apparently) I spend so much time in there I'm bored with the decor.

[robbi80]

Hi there, I've had similar problems, and it took me years to get a colitis diagnosis.

I've been in hospital once, also got intravenous antibiotics and steroids.

My flare up is on the mend now, but I'm still on a high dose of oral steroids. I wish good luck with everything, and hopefully everything will go well for you.

[CONSTANTGUTACHE]

Hi.I have tried loads of differentmedications pentasa made me worse I am now on a drug to make my immune system fight against the ibd I have ulcerative collitis and it's working I have been in remission for 9 months and I can live again.I have to careful around any people who are ill and have to have factor 50 suncream on every day.but it's a small sacrifice.

Gary

[Grumbletum in reply to CONSTANTGUTACHE]

I'm supposed to start azathioprime or something like that soon after my scan. Thanks for saying its helped you, its a big decision to use such a strong and potentially dangerous drug. I'm so glad its working for you.