Newly Diagnosed; needing advice & support

Hi

My name is Shelley and I was diagnosed with Crohn's last week after being told I had the flu. I spent 3 days in bed with a 103 temp and finally went to ER on Saturday. The next several days are a blur. I had a scope, got my diagnosis, spent 6 days in the hospital and was sent home on Prednisone 40mg; Imuran 100mg. I'm 41yrs old, a nurse and single mom - I'd just started a new job at the hospital where I was a a patient. Insurance doesn't go in effect til 10/1.

Anywho... my only real medical history is a gastric sleeve surgery 5/12 for weight loss. Now that I look back, I've dealt with diarrhea, joint pain, fatigue, etc. for years - but hey... who hasn't?

This week i'm just trying to heal & deal... I HATE prednisone - I haven't slept, I'm hot as a firecracker and petrified of gaining weight. I gained 22lbs while in the hospital, but I've lost all but about 5-7lbs of that.

My BM's have been daily... no diarrhea. Although when I gotta go - I gotta go and I mean NOW. I have no pain (other than what I'd consider normal gas). I'm not sure what to even expect as far as symptoms. I want to be off the prednisone, but not at the risk of a flare. My GI doc's plan is to wean me off in a few weeks after the Imuran starts to work. Is that normal? Is 40mg a high dose?

Yes, I'm a nurse... but it's different when YOU are the patient. I'm nervous! I don't ever want to be that sick again!! I need to go back to work asap, but I am just too tired to even think about it this week!

Any advice would be much appreciated!

Shelley

While things are bad try to bland your diet out chicken,fish,white rice,homemade soup well cooked blend the veggies be carefull with fruit till things settle down and reintroduce a more varied diet avoid greasy oily food,some alcohol is bad lager,beer,cider.many people say spicy food is bad but I find I,m ok as long as its not over the top strong try to keep a food diary learn your triggers I find melon so bad it marked my soul 20 plus times in a night
Treatment wise you,ll know this but be extremely rigid with medication times if its 8pm it's always 8pm you get the idea.a general theme is exercise helps don,t know why just does.the gotta go thing gets better your probably experiencing the joys of a flare up it,ll get better try not to stress easier said than done crohns doesn't,t go well with stress if your a smoker try to stop the meds work better if you don,t.above all remember it does get better.cheers

Hello. Welcome to the forum .

Many of us go for years with generic symptoms that slowly become the norm and we don't get help until something happens to force us.

I know pred can be horrid but for many of us, the moon face, the sleepless nights, the rashes, all sorts, but mostly the side effects get better when you taper and it does the world of good for most people with their inflammation. Stick at it, it could be the best thing you ever did for yourself.

40 mg is about a normal dose as its the dose that most people find effective at inducing remission and it's good that your GI has another med already. Imuran can take a while to kick in so the idea is to stay on the pred while it starts working then slowly reduce the pred, letting the Imuran take over and hopefully maintain remission.


It's ok to be scared, this disease can be highly over whelming.

Keep a food and symptom diary, write down everything that you're eating and the symptoms you are experiencing (mark them out of ten) so you can see any relationship between what youre eating and the severity of any symptoms.

Thank you for your replies! I'm thankful to have the support! I'm sticking to "white foods" for now - I know my gut still has some healing to do..

Hi and welcome i am also new to the forum.
Its write what you say about putting up with symptoms i have for many years like you,
I now the prednisone make you feel like rubbish but when the dose goes down you will start feeling better i am on it again second time this year, don,t worry about the weight it soon comes off . The main thing is to learn what you food triggers are so that you can work around what you eat mine are milk,gluten put in food diary and look after yourself x

I'm wiped out from no sleep! I've been up since 5am; been on the couch an hour now. I've had quite a bit of LUQ pain today (maybe gas?); doctor appt today for release to go back to work next week. We'll see!!!