UC update - Is this is good as it gets?

Hi,

I'm so sorry to hear that you're in so much pain. Don't you just feel like nobody is helping or doing anything for you?

I think you should go to your GP and tell them to do something because you can't be expected to be left to feel as though you're dying! I feel as though no - one listens or takes this condition seriously. It's seems as though until they have someone who's actually dealing with it, all we are told is to bare with it or to wait until the meds kick in which could be never! It's not fair at all especially when you're in so much pain. Demand that the doctor refers you immediately or the next thing you can do is go to A&E because they'll have a specialist there who will have an interest in actually listening to you because they specialise in it and they will know what you're going through.

I know it's easier said than done but try and manage the pain as much as you can. Meds will not always work and so the next thing I've learnt to do is cope with the pain and try to manage it somehow to get by when I'm being fobbed off.

These forums are great for support because we all know what you're going through but it's a shame we can't make it better for you.

Sam

Please go and see a doctor

It's not right your sore when you eat

This is just the beginning it can take years to get on the right meds don't give up please

Get your inflammation levels checked they must be high!!

I don't even think mezaline is that stong do ask sbout other options or see another doctor Doctor different perspective

Take care xxxx

I was put on the mesalizine top dose from the beginning of my diagnosis of UC and from my understanding its just the standard treatment.

What's worrying is the postcode lottery of health care.

If I was feeling 1\5th as bad as you are I'd ring my IBD nurse and I'd been seen in a day or so and prescribed steroids to reduce inflammation or offered another type of treatment. I'd then be put on monthly appointments until they were satisfied my health was improving.

I take 4G of pentasa a day but its not enough so I use I take a further 2g of mesalizine via a enema in the evening but also use periodically I use predfoam which although its literally a pain in the are its an absolute godsend at the moment - I don't find that steroids work for me but this does ( I'm currently resisting immune supps etc)

The gist of this is, if you have the means of contacting a ibd nurse or your hospital for treatment then do it - a high inflammation marker can lead to more serious issues that UC so look after yourself.

Ask your medic for oral morphine

I take it every 4 hours it tastes OK and a sip of water removes the taste.

Pain is very bad for your moral and it wears you down.

I am probably a morphine addict but current thinking is that the addiction is easy to ween off at a later stage because I am not normally an addict.

pain eating suggests Chrones.

I hope you get better soon.

When the day is long and the nights are yours alone hold on.

REM everybody hurts.

Have faith that it will be OK.

Best wishes bob

Hi everyone

Firstly a big thank you for your support, advice and encouragement. It has really helped me.

A lot has been sorted out the last few days. Firstly pain level is at last managed and it is bearable now thank goodness. (Thanks to GP's help) have set dose of painkillers that takes edge off so I feel more human again.

Dietitian and chemist have sorted my weight loss issue and a big stash of 600 calorie drinks have arrived which has helped on the weight front which is down.

Now it's just the consultant to sort and IBD nurse. Not clever. Rang them and my IBD nurse is away and not back until next week and consultant isn't there either!!

GP has intervened and said heart racing and passing out is common with Mesalazine and is now getting me a new drug sorted. According to hospital I will get a phonecall from consultant tomorrow.

Will let you know, if not I agree with you millie I feel as if I am being left by the hospital with no support at all (I don't see my consultant until December 2015 and my nurse for another month) and a second opinion/changing hospitals is a good idea.

Off for another sleep now really tired with this. Will keep you updated.

Thanks Bob and everyone again.

Metaxa