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Posted 4/25/2012 2:14 AM (GMT 0)
I just read below that someone quit prendisone because "it is bad"?

I Have just recently been diagnosed with Crohns after being in the hospital for 5 days from a severe GI bleed and seizures. I have since been on prendisone for six days now.

I dont know what to eat, or not eat. There is so much conflicting and inconsistant info out there.

Im scared of one day having to have my intestines removed and have a colostomy bag.

Im 34 year old single mom of a small child.... Trying not to stress too much but how does one do that? Ive heard stress is bad for Crohn's, yet have also been told it has nothing to do with it.

Any info/advice would be so helpful and much appreciated as I am feeling very lost and confused :(

Thank you in advance !!

Posted 4/25/2012 2:24 AM (GMT 0)
hey, i was on prednisone for a while due to my CD but all it did was make me gain weight, it is majic the way that pill works. while i was on it, it fixed everything. they wont keep you on it forever its not allould but you will loose all the weight once you stop, they have so many options to go through before you have to colostomy bag ive had chrones for 2 years and i had it bad.

hope all is well
Posted 4/25/2012 2:29 AM (GMT 0)
Hello, sorry you are feeling so bad, it is always kinda scary when anyone is diagnosed with a new ailment.

I was diagnosed in 2007 and when it comes to food everyone is different.  Checking online for a Crohn's Diet is a good place to start.  I found that food became a trial and error thing for me and I suggest keeping a food diary.

I have never taken Prendisone so I can't help you with that but I so suggest making sure that you have a good G.I. doctor that you feel comfortable with, that is key.

Try not to worry about surgery, just worry about getting things under control and yes stress can make your Crohn's worse.

I am a new member here and I have found help in all the posts and very supportive people.

I hope this helped a little, try and cheer up, you are among people who understand.

 

Posted 4/25/2012 2:31 AM (GMT 0)
Welcome S.A.D., I'm glad you found the forum.

Don't freak out about taking prednisone. It's a great way to quickly induce remission. Some people get really awful side effects from it and hate it, some people don't. If you've been taking it for six days and it's going well, then stick with the plan.

What is your DR's plan? How much pred are you taking and what instructions have you been given for tapering? What is the next step in your medical treatment? These are all things that you need to discuss with your DR. There is a lot of experience on the forum and any question you have, I promise someone will have input.

Most people with Crohn's do not end up with a bag. Some do, but only after a very long struggle with stubborn disease. You are not there yet. The most important thing to do right now is get over this bad flare, get a solid plan in place and then work out the details of how you are going to manage your illness. The most important thing, IMO, is learning about the disease and how it's affecting you particularly. Where is your inflammation, what else is hurting, how is your nutrient absorption, what is your iron level, how does your diet need to change or not need to change....

Yes, there is a lot of conflicting info about diet out there, and you will see a lot of those conflicts on this forum. My recommendation is not to jump into that right away, but to get a medical plan figured out so you can make some thinking space for yourself.

I look forward to getting to know you better!
Posted 4/25/2012 2:32 AM (GMT 0)
Sorry that you had a rough go and ended up in the hospital. Is the pred helping you feel better yet? It can mess with your emotions so keep that in mind while you are feeling so worried--part of the anxiety you may be experiencing is likely due to the pred.

Figuring out what to eat may take some time and this is something that we usually learn by trial and error. Some people start out by eating soft foods that are easy to digest like chicken, rice and well cooked vegetables. Many people say they feel better on a gluten free diet. Lactose intolerance is common among those with IBD as well. Don't worry, it may feel overwhelming right now but you'll get it figured out.

I hope that you will be feeling better very soon! Let us know how you are doing.
Posted 4/25/2012 3:33 AM (GMT 0)
Wow thanks everyone! What prompt responses :)
Right now I am in bed with a massive headache, I had this same headache the first three days I was in the hospital, and now its back. Do headaches go along with crohnes? Or predisone? I'm not rreally allowed to take anything for headaChes, ( normally I would've taken excedrine ), but they perscribed me norco at the hospital, I took two, hasn't touched it.
Am gunna try to sleep it off....
Will respond to above emails tomorrow
ThaNks again!
:)
Posted 4/25/2012 4:23 AM (GMT 0)

i have been on and off pred for the last 10  yrs.  Yes it does work GREAT.  I am on it right now and have been on it since March of 2011.  Small dose of 15mgs.  Makes my life great.  I have one side affect and that is, sometimes i get mood swings.  But compared to what i was going threw with ths dd, it is worth it.  I even told my family and co-workers if i am a butt head it is because of the Predisone.                        

  My GI doc does not like prednisone. for whatever reason i like it. yeah   I have not gained any weight from it mad    Darn it. 

Posted 4/25/2012 12:31 PM (GMT 0)
I was on Predisnone for months. It worked great for me, i did gain a few lbs (not to muc) but i really needed it. I was actually hoping for a little more. If you're going to be on it for a while you might need to take extra calcium And/or vitamins for your bones.
Posted 4/25/2012 2:37 PM (GMT 0)
Im on 40mgs of pred. First few days on I felt kinda amped out. Now Im just really tired. As far as mood swings, I feel more like its a mood inhancer? Like it amplifies the mood Im already in.
Should I be taking any supplaments?
And what can I take for these awful headaches?
I sure hope I'm not lactose intolerant since I already have Celiac Disease and don't eat gluten.
I read that those of us with Crohn's require 30% more protein than the rest? And to eliminate sugar and simple carbs? This source also said to eliminate dairy, lactose intolerant or not. So that leaves meat, fruit and veggies? Well that would certianly take care of any potential weight gain from the pred right? :P
Anyone have thoughts on this stuff?
Thanks again!
Posted 4/25/2012 2:54 PM (GMT 0)
Like I said above, I would not spend any time right now worrying about diet. Most Crohn's patients find their own dietary restrictions are unique to them, and the best way to discover what works for you is to observe your own food intake and body response, with or without a journal.

If you are currently flaring, it might be helpful to eat what's called a low residue diet, which means there is very little fiber, because your inflamed bowel will find it easier to process and it might cause you less discomfort.

As for headaches, I treat mine with tylenol. Make sure you are drinking plenty of water, especially if you are having frequent diarrhea. And as for supplements, you should talk to your doctor about your vitamin D levels, b-12 and iron. These are often low for Crohn's patients in active flares, and can contribute to how poorly you are feeling.
Posted 4/25/2012 2:56 PM (GMT 0)
Some people do well on a low carb diet, like the Paleo diet. I usually feel pretty well eating a healthy gluten and lactose free diet that includes rice and potatoes, but no junk food. I eat a lot of almond butter and rice cakes.

Are you allowed to take tylenol for the headaches? Not as good as Advil, but safer for those with IBD.
Posted 4/25/2012 3:17 PM (GMT 0)
Tylenol is like taking sugar pills for me :(
I drink a gallon of water a day, even more now that Im on the pred; makes me so thirsty!
I have my first appt with my GI on Friday, I have so many questions and am feeling really impatient. I feel like there is more that I could/should be doing for myself other than just the pred right now.
I think a food journal is a good idea :) Before I was in the hospital, i was crazy bloated and in a lot of pain for three weeks prior to my incident. I thought, at first, I was having a Celiac reaction, but realized it wasnt when it didnt go away...
Posted 4/25/2012 9:43 PM (GMT 0)
I suggest you go to the ccfa.org website. There is tons of information you can read to get familiar with Crohn's disease, and it may help you devise questions that you want to ask your doctor. I hate prednisone, but when I need it, then I just do my best. I have a lot of agitation and difficulty sleeping on pred. My doc has given me .25 mg of xanax when I'm on pred, to take before sleep, and that has helped. The Pred will be a temporary medicine to get your inflammation down. Whe you see your GI, s/he will help you come up with a plan for long term medications. Ask us any questions you have here too. It's a lousy disease, but the good thing is that most of us have times of remission, so we can at least get a break. Ask your doc about the headaches too....you shouldn't have to suffer pain. Take care and welcome to HW!
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