I was diagnosed with Crohns disease a few months ago and was put on prednisone which I will NEVER do again!!!! I blew up like a ballon! The sad thing is it did help with my stomach. I was just in the ER for a 2nd time 2 days ago and it is just a terrible time for me every time I have gone. I am really depressed and emotional about this. I am starting a gluten free diet as well as "real" food only. Which means I have basically been eating babyfood...Im just looking for any suggestions, info, encouragement anyone can give me. This is all so overwhelming. Thank you!
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Help!!! Newly diagnosed and feel like I am drowning!
- Thread starter Joji
- Start date
Hi! That sounds so tough, but don't worry! We all know how you feel, we've all been there and maybe are still!
I had the same reaction to pred when in hospital. I was huge, put on so much water weight and it was so uncomfortable. Recently went back on it and didn't notice it happening as much. Think in hospital I was sitting around, my body was so weak as I had been sick for a while but not diagnosed. This time I took it whilst still going to work, my body is healthier and I'm taking other meds to manage crohns. I think thse factors really made a difference for me. Hopefully you'll notice the same!
Did dr suggest gluten free? It's so hard to know what to eat, I think the key is gradual introduction! Good luck, I hope others can help too! Xx
I had the same reaction to pred when in hospital. I was huge, put on so much water weight and it was so uncomfortable. Recently went back on it and didn't notice it happening as much. Think in hospital I was sitting around, my body was so weak as I had been sick for a while but not diagnosed. This time I took it whilst still going to work, my body is healthier and I'm taking other meds to manage crohns. I think thse factors really made a difference for me. Hopefully you'll notice the same!
Did dr suggest gluten free? It's so hard to know what to eat, I think the key is gradual introduction! Good luck, I hope others can help too! Xx
Joji,
Remember Prednisone is only a temporary solution to stop Crohns until the other medications can take effect. What other meds are you taking? It often takes 2 doses of prednisone. It is awful, and we swore we would never put our daughter on it again. But we knew it was necessary at the time. She also had all of the side effects.
After being diagnosed in Jan, 2, 6 week doses of Pred. and lots of other meds, the Remicade, Asacol and daily vit with iron are working for her. Where is your Crohns located?
Thinking of you and know how hard it all is. I hope you have someone by your side to give you support.
We are all here to help, and you will find lots of information.
let us know how you are doing.
Remember Prednisone is only a temporary solution to stop Crohns until the other medications can take effect. What other meds are you taking? It often takes 2 doses of prednisone. It is awful, and we swore we would never put our daughter on it again. But we knew it was necessary at the time. She also had all of the side effects.
After being diagnosed in Jan, 2, 6 week doses of Pred. and lots of other meds, the Remicade, Asacol and daily vit with iron are working for her. Where is your Crohns located?
Thinking of you and know how hard it all is. I hope you have someone by your side to give you support.
We are all here to help, and you will find lots of information.
let us know how you are doing.
I was also wondering if your doctor put you on another drug besides prednisone? I'm new here and have a fairly new diagnosis of crohn's - November 2012. My doctor put me on Asacol and told me to get on a low residue diet and within one month of doing both, all my symptoms went away... for the most part. I had bad stomach aches, night sweats, loss of appetite, low energy and occassional vomiting. So hopefully your doctor will put you on the right medication based on the type of crohn's you have and the severity. I totally understand how you're feeling and just know that you have plenty of people here that are in the same or similar situation and can help support you. :heart:
sawdust
Moderator
- Location
- Pennsylvania
Hi Joji, and welcome.
It can be alot when you're first diagnosed. I think you'll find that Crohn's is a very personal thing. What I mean by that, I quickly found out the foods, behaviors, etc that worked best for me. I would expect that part of this discovery process will be working with your GI to find the right treatments for you as well. I hope these things can work together to help you feel better.
Prednisone can be rough, but it usually does a good job for me when I need it. Unfortunately, there have been times when I was happy for the side effects.
We do have a prednisone subforum here that might be some good reading for you.
We also have a diet subforum that has lots of good information. One thing that I do when flaring is keep a food diary to help me determine what foods are helpful, or not helpful, when I'm not well. You mentioned a gluten-free diet. Was that suggested for you?
I think you'll find this to be a great place for information and for people who can understand you like no one else can! There are lots of knowlegeable folks here with plenty of patient experience. Welcome!
It can be alot when you're first diagnosed. I think you'll find that Crohn's is a very personal thing. What I mean by that, I quickly found out the foods, behaviors, etc that worked best for me. I would expect that part of this discovery process will be working with your GI to find the right treatments for you as well. I hope these things can work together to help you feel better.
Prednisone can be rough, but it usually does a good job for me when I need it. Unfortunately, there have been times when I was happy for the side effects.
We do have a prednisone subforum here that might be some good reading for you.We also have a diet subforum that has lots of good information. One thing that I do when flaring is keep a food diary to help me determine what foods are helpful, or not helpful, when I'm not well. You mentioned a gluten-free diet. Was that suggested for you?
I think you'll find this to be a great place for information and for people who can understand you like no one else can! There are lots of knowlegeable folks here with plenty of patient experience. Welcome!
Thank you all! I am doing the corticol enemas instead of the p.o. prednisone. It has taken the edge off but not as effective as the p.o. would. It is working better for me though. I have stopped eating all dairy and recently read a book called Wheat Belly which is why I decided to try a gluten free diet. So far it has helped with symptoms a little but like I said this is all brand new so i don't have any great answers yet. I am also taking Asacol and I take immodium while working. My doctor is looking at starting injections which is scary due to them being immunosuppresants and I am a nurse. Thank you all for the info and support.