Chrones disease

Rebekah24

yeah predfoam and pentasa, pretty standard. A full flare might require a course of steroids as well.

Good luck with further investigations sweetie, have a good xmas

mr_rush

it is scary being diagnosed with a life long disease when you are young. not what you really expect. then you start to google and you read all sorts of horror stories and think the worst will happen to you.

A good place to start getting some basic knowledge is patient.co.uk as well as the Crohns and UC website.

Worthwhile keeping a food diary to see which (if any) foods can precipitate flares.

Keep yourself in otherwise good health: no smoking, exercise and not too much alcohol. Fitter people recover more quickly from all illnesses - surgery, Crohns flares, pneumonia...

US miracle drugs are sometimes mentioned but I would take what you read with caution. A patient is of course a cash machine for the US medical system and this can cloud the judgement of those who prescribe drugs there.

Good luck.

becky81

Thank you all for the help xxxx And i hope you had a fab christmas.
I have looked online, and have also been trying to find a local support group to go to but havent found 1. My local drs surgery dont have crones support groups! And wondered how to go about finding one.


xxxx

skipsmum

Hiya,
My brother (now 32) has crohns which he manages with a colostomy and diet. It took him years to work out what foods irritated him, partly because one food was chicken and the docs insisted it couldn't be!
DS (now 9) has crohns and illeal fossal colitis. He has an enzyme powder that we sprinkle on his food to help break it down, and gets vitamin and nutrient drinks on prescription. DS seemed to know very early on what would aggravate him, and would never touch tomatos, orange juice, or high fibre foods like brown bread, or broccolli. All these things make him worse and hes better off eating things that have already been broken down or refined.
Anyway, these are two people I know well and both have completely different treatment plans and ways of dealing with it, so make sure you get lots of information before doing anything drastic. Both my brother and my son have a good prognosis provided they keep fit and healthy.

Angie74

Hi Becky, I've had crohns since I was 24, I'm 38 now, no surgeries, but plenty of flare ups and hospital stays. If you want to chat about it privately, send me a private message.

Stay away from peppers, that's all I'm gonna say after eating them a couple of weeks ago and thinking I was gonna die about an hour later. You'll get to know over time what affects you and what you can and can't eat. I eat pretty much whatever I want, but that doesn't mean I can eat anything, it just means my diet is pretty boring by choice lol.

Anyway like I said, if you wanna message me privately, I'll happily answer any questions you have if I can.

Angie

Rebekah24

Agreed..peppers and mushrooms..mushrooms put me in hospital 3 times..I think I learnt my lesson now!

Treatment will depend on how bad your condition is- but whatever that is there is plenty of hope and options

Hope you had a good xmas, same here, if you want a chat drop me a msg hun

zzzLazyDaisy

Watch out also for any pain killers containing codeine - they cause constipation which can lead to blockages and that is exactly what you don't want. I stick to soluble paracetomol mostly (crohn's is a malabsorption disease, so your system may have difficulty absorbing the tablets) - but if you need to take codeine based painkillers, speak to your GP about taking something like lactulose (or whatever alternative your GP recommends) to prevent painful blockages.

Also, your GP/consultant should have told you this, but just in case - stay away from ibruprofen, nurofen etc and non-steroid anti inflammatories unless you have discussed it with your GP as they can cause internal bleeding in people with crohn's. If you are prescribed anything like that, ALWAYS tell the doctor that you have crohn's and check that it is okay to take them.

becky81

zzzLazyDaisy wrote: »

Watch out also for any pain killers containing codeine - they cause constipation which can lead to blockages and that is exactly what you don't want. I stick to soluble paracetomol mostly (crohn's is a malabsorption disease, so your system may have difficulty absorbing the tablets) - but if you need to take codeine based painkillers, speak to your GP about taking something like lactulose (or whatever alternative your GP recommends) to prevent painful blockages.

Also, your GP/consultant should have told you this, but just in case - stay away from ibruprofen, nurofen etc and non-steroid anti inflammatories unless you have discussed it with your GP as they can cause internal bleeding in people with crohn's. If you are prescribed anything like that, ALWAYS tell the doctor that you have crohn's and check that it is okay to take them.

Thanks for the info xxxxxx

To be honest when i had my chat with my consultant, he just said "hi im Dr ~~~~ you have crones, and be on medication for life. You have had a partial colonoscopy, but need a full one, and i will see you in 3 months"
I even walked away, to then go back to ask about my diet!"
I walked away feeling stunned and confused. I got to my car and cryed because i had no idea what it was, what i would have to do, what meds or hospital stays i would have to do................................................. So i have to say a MASSIVE thank you, sincerly, to every1 that has posted on here as its comferting to know that im not alone. And that if i have questions to ask that i will have help with the answers. And if theres any1 in the same boat as me, feeling confused and in need of help, its nice to know they can find it here.

zzzLazyDaisy

This may sound a little extreme, but you can ask to see the stoma nurse. No, you don't have a stoma, and with good management and care, hopefully you never will. But many people with a stoma have crohn's, so the stoma nurse will be able to advise you about the practicalities of managing the crohn's (I was with my stoma nurse for about 10 years before I actually had a stoma, and it was great to have that on-going care and contact).

Also it is worth asking to see a dietician, but do ask if they are familiar with crohn's before you see them, because I've seen dieticians who clearly didn't have a clue about crohn's and asked ME for advice.

Also be aware that long term crohn's, especially if acompanied by frequent flare-ups, can give rise to crohn's related arthritis. The spine is often affected but knees can also be a prime suspect. This does not mean you |WILL get arthritis, and hopefully not until you are much older. But there are rheumatologists who specialise in crohn's related arthritis, so if you do get problems, do your research - again this is something the stoma nurse would be able to help you with, if you do get to see her/him.

Also, I know someone else has mentioned this, but do join the NACC, there is an annual subscription, but they are a wealth of information and also do guidance sheets for applying for DLA, if that becomes necessary. You may only want to join for one year, till you find your feet, but it is definitely worth it.

lolly5648

If you do join NACC (http://www.nacc.org.uk/) which costs £12pa you will have access to their 'in-contact' telephone line. It is staffed by volunteers who have had Chrohns or UC and they will listen to your worries and reassure you. They don't give medical advice but are great if you want to talk about the embarrassing aspects of IBD. You don't have to give your name so you can be completely annonymous.

One thing I would say is that there are a lot of consultants who specialise in IBD and it might be worth asking your GP about this and try to get referred to a different consultant who might be more sympathetic.

The groups cover most areas and there are all ages. Whereabouts do you live?