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New & just Diagnosed... Questions!

Location
Tampa
Hi everyone, I just came across this website and SO grateful! Everyone seems very nice and supportive! I was recently (April 7th) diagnosed with Crohn's and up until last Nov. I never got sick, no flu nada... now I learn I have Crohn's. :/ Lord have mercy on me!
I feel like there is so much to take in and I have a few questions.

I'm taking prednisone, does it make anyone else shaky? is that normal?

Obviously i'm trying to put this in remission, about how long does it take to calm the disease down? (I know everyone is different, I would just like to know other peoples timeline).

My stomach keeps making bubbly gurgling noises... is that normal after eating something your stomach obvs doesn't approve of?


I wakeup a few times a night for BMs... is it normal since im still not in remission?

(Sorry i'm all over the place!)
 
Hi!
Welcome to the forum, its so hard when you have just been diagnosed, your head must be spinning! But you'll be fine :)
I am on pred at the moment too, and it makes me shake as well :) as well as a high heart rate, I was told cutting caffeine helps with this!
The first time I was on pred it took about a week before I felt a lot better but its taken longer and longer each time I have been on it. I have had it about 4/5 times now.
It is different for everyone but its normally fast acting!
Yes gurgling and noises is very normal, mine sounds awful, especially after lactose! which I now completely avoid.
Waking up in the night is also very common, especially as your disease is yet to be fully controlled.

I hope that helps! any more questions ask away :)
xxxxxxxx
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

There is certainly a lot to take in when first diagnosed, just know you have come to the right place for lots of helpful info and support. What dosage of the Pred are you on? It can take a few days to kick in and fully settle the tum so it isn't unusual to still be getting up in the night for the loo. I would keep an eye on this and if it doesn't improve soon then let your doc know - has anything been mentioned to you yet about a long term maintenance med? Also are you on a calcium supplement at all? I too can get a noisy gurgling tummy if it isn't a 100% happy with things I have eaten and when it hasn't been settled, I would say it is worth keeping a food diary to see if this helps you to pinpoint problem foods to then avoid in the future.

Wishing you all the best.

AB
xx
 
Location
Tampa
thank you both for responding!
pred: im taking 30 mg (tapering down) and i'm still getting HORRIBLE cramp pain before i have a BM....
and i'm on Asacol for the long term and no i'm not taking calcium, should I take a calcum supplement? (& what is it for exactly?)

i think a food diary is in the near future for me since i've always eaten what I wanted.
 
I am on calcium as its a good idea to take it when you are taking pred :)
A food diary is also a brilliant idea! That's what helped me identify I was lactose intolerant.
Xxx
 

Angrybird

Moderator
Location
Hertfordshire
The calcium supplement will help protect your bones from from the steroids, it is something my doc has always sorted when I have been out on them as long term use or many courses at high doses can sometimes lead to osteoporosis.
 

Angrybird

Moderator
Location
Hertfordshire
Speak to the pharmacist about what to get, I don't know if it is branded the same where you are but I am usually given chewable lemon flavoured tablets called Calcichew D3 Forte.
 
Welcome :)
I agree with angrybird,
Calcium and vitamin d, are essential with prednisone, I was on it for years and I have osteoporosis in both my hips, caused from the prednisone, I was never told back well over 20 years ago of the affects of this drug, otherwise I would have taken all precaution to prevent this from happening, but the one thing I will tell you for all the bad side affects, it is an amazing drug, and works really well. Not sure of everyone else but when i was on it my house was never so clean. Lol good luck all the best and ask as many question as you like.

Keep us posted :)
 
Sorry about your diagnosis and I hope you find remission soon. I was newly diagnosed about a year ago and had the same reaction. I also had no prior symptoms and was literally floored. It has been a roller coaster ever since. One piece of advice I can give is to never take this disease for granted. You may be feeling great and think you can ease up on your meds, or eat whatever you want....caution!! I did this and ended up in the hospital for a week with a bowel obstruction! I am also currently on prednisone. I started at 40 mg per day, and have tapered to my current 20mg. I have all of the side effects you have described. It really sucks because although my tummy feels good, the rest of my body aches and shakes. I am also on Remicade and Asacol.

I am going to the surgeon this Thursday for a consult. I am hoping that getting the part of my ileum removed will finally put me into remission. Good luck to you and keep reading on the site. It has truly helped me cope!
 
Hello and welcome to the forum, it's definitely the place to come for support and info, I'm relatively new here too and have 'met' some wonderful people who have been really helpful.

Being diagnosed with Crohns surely is overwhelming, so much information to absorb, new diet to embrace and anxiety at what lies ahead......we have all been there and understand how daunting it can be. Please feel free to ask as many questions as you want and never be embarrassed about a question, it's important to know that we will happily try to help you with even what seems to be the most sensitive queries.

I have also had the shakes and rapid heartbeat while taking prednisolone but it went away when I was off them. And goodness...gurgling tummy! If it was an Olympic sport I reckon I might get a medal :) I gurgle madly after I eat. I'm still up at night sometimes for BMs but this is normal and should settle once medication is right.

I hope this helps, and being all over the place?...well I think it;s part of the process :) You will be in one spot soon, just take it day by day and before you know things will have calmed down, take care.:ghug:
 
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