Greetings from a gutted newbie.

[Vezmarelda]

Hullo everyone,
I have been lurking in the shadows on here for a few weeks, but today I was diagnosed with Crohn's of the Ileum, so I've plucked up the courage to post now I am official .
I will admit I am gutted with today's result. Although I don't know why... well I kinda do.
I am 27 and for the last six months I've been in pain, lower right of tummy button, not been able to eat and having all the other bodily functions you lot are accustomed to!
I ended up in hospital twice, the second time in July, when my bloods started to show high csr?? Levels and other things.
A barium scan then showed I had an inflamed ileum so I was given 40g of prednisolone, which I think might be what's also referred to as prednisone?? On here.
Meanwhile three weeks ago I had a colonoscopy. When I came round a nurse told.me everything looked grand. So I stupidly thought maybe I just has a weird bug.
But today when the consultant showed me pictures of my bad bits I was shocked ... why the nurse had said things were routine is a mystery, so I guess I really wasn't prepared for that.
Anyway the aim now is to try and reduce the steroids again, I got down to 20g a fortnight ago but a lot of symptoms started to come back so was put back on 30.
I had blood work done today because the next step is to try Azathioprine should the same thing happen again. I was given a leaflet about it ... but it sounds scary ... better than being in pain though I guess .
I'd welcome any extra info or experiences of this drug, if people are willing to share
X

 

[valleysangel92]

Hello, welcome to the forum.

I understand how you feel, this is a lot to take in and it can be a very difficult illness to deal with. We are here to help as much as we can!

It's hard seeing the images of how bad things are for the first time, especially if your squeamish, but it can help us to come to terms with what's happening and the need for potent and sometimes unpleasant medications.

I also understand your fears about taking aza but the risks are minimal and most people find any side effects are manageable. Please check out our treatment section for more information and other peoples experiences.

You can also check out www.crohnsandcolitis.org.UK

I would advise you keep a symptom and food diary, this will mean that you can keep an eye on your symptoms and how your diet affects them. Just write down everything you eat and drink and any symptoms your experiening, give the pain a score from 1-10 with 10 being the worst.

 

[Vezmarelda]

Thanks for the speedy reply Nicola! Yes I will start the food chart, at the moment I am scoffing just about everything due to the steroids ... but that won't last I am sure.
Before I started them I had established a hate list of Macdonalds coffee, garlic, cream, alcohol and some fruits .. but since I was eating them as a fruit salad I hadn't worked out which ones (d'oh) haha.

 

[DJW]

Hi. Just want to send you my support. Valleysangle has given you great advice. Keep us posted.

 

[valleysangel92]

Oh the pred munchies, they get everyone. Hopefully it will give you a nice stable weight though.

If you find that you cant tolerate fruits or raw veggies, a lot of people find that juicing them helps, since it breaks down the fibre, but you can still get all the lovely nutrients.

Also, if you haven't had your vitamin and mineral levels checked yet you might want to ask your GP to run some blood tests to make sure you aren't malnourished

 

[Vezmarelda]

Thanks very much DJW and I haven't had any checks on them valleysangel92.
Tell you what I have got, since starting the Pred (apart from the munchies), fingernails.
Chuffed to bits with them, they always snapped and were very brittle before.
Least that's one small perk

 

[valleysangel92]

It might be an idea just to have them looked at then.

I found my nails got sooo much better too, it's because your system has the resources to use to keep them healthy now

 

[lottie1963]

Hi my daugther was diagnosed in march 2013 with crohns, affecting her t I and also she has a crohns type fissure they started her on pentasa, bit optimistic the gi said but we have found its slot of trial and error with this disease so far. Charlotte had a minor op in june ref the fissure and since then in the last 6 wks started azathioprine, alot of her symptoms have gone and although I was the one who didnt really want to go down the road of immunosuppression I am not living each day with the condition. Happy to say she has tollerated the meds so far and like I say although she has a low iron count and it generally tired she is so much better. She is just now dealing with the idea of having to take the meds long term and so today is not great. But tomorrow might be better so stay positive . Wishing you well x