Hi everyone - new to forum and Crohn's

Just another "saying hi" post

My name is Charley, I was officially diagnosed with Crohn's a few weeks ago (having had a "this is probably what you've got" diagnosis last November), the consultant said I've probably had it for a few years and just not known what it was.

I first realised something was wrong when I started getting bad stomach pains and being sick almost two years ago, which happened once every few weeks with no kind of pattern to it or indication of what was wrong. First went to the doctor's with it about a year ago, went for various tests over the last year and finally found out for definite a few weeks ago.

Not on any medication at the moment, the side effects sound worse than the symptoms I currently get so I don't think I need it right now.

I'm currently debating telling some of my colleagues what I've got, now that I know what it is. I've kept quiet about hospital appointments and feeling ill and stuff up til now, it just felt a bit too private to chat with people about really, but I might explain to some of my immediate colleagues, if only so I don't have to be so evasive when they ask if I did anything nice on my "day off" (er, no, I had a hospital appointment) or if they ask if I had a nice weekend I don't have to just say "yes thanks" when I spent most of it in pain and throwing up... and so they know there's a reason for me generally feeling tired/crap at work sometimes.

But yeah, that's where I am right now.

A bit about me: I'm a musician (when I'm not at my day job) and I'm vegan (been vegan for 5 years and vegetarian for about another 7 before that), so if anyone has any questions about vegan/dairy-free/egg-free cooking/products/nutrition etc. I'll try and help. I'll probably be asking newbie questions myself on here, so if I can help anyone else in return I will try and do so.

Looking forward to meeting you all

Hi Charley and welcome!

Whether or not and how much to tell colleagues is always a personal decision. But if you think it will help them understand you a little better, and if you tell them in confidence, it could really help your working relationship with them. What is your day job?

Do you play an instrument or sing or both? Are you currently playing any gigs?

Do you and your doc have any long term plans, or are you going to try to stay off the meds as long as you can?

Keep us posted on your progress and have fun poking around the forum. Lots of good info and nice folks around here!

- Amy

Hi, Charley! Welcome to the forum!
Well, the meds can be scary, that is a fact. Just be careful though as letting it go may cause major difficulties down the road. Some people do okay without the meds, I am not one of them.
There is a sub-forum for diet on this forum. You may want to check that out as some people may have questions regarding vegan diet that you may be able to answer.
Telling your close business associates about your CD is your call. I am very open and tell anyone just about anything they want to know about my disease. But again, that's me. Plus, I work in the health field with people that have been exposed to much worse stuff!
I really started out just to say hi and welcome and I wrote you a novel, didn't I? Sorry about that!
Michele

Hey Charley, welcome to the forum. I'm pretty new on here too and I've found it a godsend for information and support I sing in a band too, but it's not my day job either. In fact not being able to sing at the moment is doing my head in. I'm currently having a flare up and can't sing using my stomach cause it hurts too much. I can't sing quietly either, I'm a belter!!! hahaha
Anyhow, hope the forum helps. Take care and stay well.

Paula
x

Hi Charley,

I just joined the forum today and am also in the UK.
I've had a pretty rough ride so far but I'm pretty sure CD can be worse than UC so you may want to take some advice on the best way to handle treatment and medication.

I have been having difficulties at work since being diagnosed with UC and am confident that I am covered under the Disability Discrimination Act so I'm pretty sure you will be too.

I hope you won't ever need to exercise your rights but I think you may need to know where you stand with such things especially if you are thinking of applying for other jobs or if you find you need "reasonable adjustments"

It's good to hear you are coping so well

Not on any medication at the moment, the side effects sound worse than the symptoms I currently get so I don't think I need it right now.

Hiya Charley
and welcome fellow Brit

Have a really good think about this ^
To leave inflammation to spiral out of control is asking for trouble!
Inflammation can cause scarring, strictures and narrowing which ultimately can/may cause blockages and obstruction.
Take this from an old Crohnie who's been round the block a few times! Yeah?
Any questions, fire away, always someone here to help
lotsa luv
Joan xxx

Thanks everyone for your welcomes and words of advice. I have another consultant appointment in a few months and I think we decide then what to do next. I only recently had an endoscopy so I guess the consultant knows what state my insides are currently in, he said it was up to me at the moment as to whether or not to go with medication, but I'll just see how it goes in future.

Welcome musogirl. This forum is a great community of kind, caring people. You've landed in the right place! Sounds like you have a good relationship with your doc, yeah? That's a step in the right direction.

Take care,

Hi, and welcome.

I would just say, don't ignore the medications because you think you don't need it. Crohn's can get real bad if left untreated. (ask me - ugh)

Hi MusoGirl,
Welcome to the forum. I am studying music at university (well technically I'm on sabbatical at the moment but that's what I would be studying if I wasn't so sick). I play the violin. Right now, practising is one of my best "therapies." It's the only thing that can distract me from Crohn's.

I'm happy that you finally got a diagnosis, and that you are managing to get by without medication. I am currently on prednisolone and mesalazine and they are not having any effect on my symptoms. It is very frustrating. My gastro keeps putting the dosage up and I just keep feeling worse and worse! That said, however, I would definitely listen to some of the "veterans" (sorry if that's not a good term!) of Crohn's about not leaving your Crohn's untreated. It's definitely better to treat early rather than wait till you end up in hospital! Maybe it's just a matter of monitoring your symptoms and making sure you tell your doctor if you start getting worse.

I only work one day a week teaching violin, but as soon as I got diagnosed I told my boss that I had Crohn's. Soon after everyone else found out. In my experience my colleagues have been really supportive and helpful. It's definitely easier to be honest than to try and hide your symptoms when you're feeling terrible. I have learnt the hard way that honesty is always the best option.

Anyway good to hear from you and best wishes

I also forgot to mention that I am also vegetarian. I am very nearly vegan, although I do consume plain biodynamic yoghurt sometimes.