My mind is going crazy!

[Rebecca29]

For those that don't know my story, Ill make it brief.

Diarrhea for 5 years, decided to look into it, had colonoscopy on Jan 10th, 2011, Doctor told receptionist to call me and tell me its "Suggestive" Crohn's Disease, put me on 4,000mg of Pentasa a day. Called them this past Friday to let them know I am still watery d and going 8 times a day (which is no change from before Pentasa). Now they want me to come into the office to discuss steroids. This I need to come to the office for, not for my results. Really?!

The name steriods alone scares me, not to mention possible side effect stories I've read

I called and scheduled a second opinion appointment because I just don't know what to do or how to handle this. I hear my GI Doc is great and been doing this for years! Any suggestions, advice for me?

 

[Cat-a-Tonic]

"Steroids" could be prednisone, which is relatively harsh and does carry the risk of a lot of side effects - or it could also be Entocort (which I'm currently taking) which is not a systemic steroid (pred is systemic), it only works on one spot in the intestines, so there are not as many side effects (the worst side effect I've experienced while on Ento is headaches). It'll be up to you and your doc to determine which one is best for you - Entocort is fairly mild, so if you try it and it doesn't do much for you then you might try pred.

If I were you, I'd search the forum for both prednisone and Entocort - that way you'll know more about both and can ask informed questions of your doc (make sure to write down your questions, that always helps me when I go to my GI). And if he does end up saying he thinks you should be on pred, you don't have to agree to that. It's your body, he can't force the pills into your mouth. Good luck and let us know how it goes!

 

[AZMOM]

Rebecca,

Yes it could be prednisone and it can often "kick" the acute inflammation so then the other medicine can just keep things calm. The big question I would want to know is how long he wants you to take them. Prednisone can be a great short term medication but stinks for the long term. And yes, there are unwanted side effects but they will go away when you quite taking it.

I'm betting that they want to talk to you about your results, how you're doing and then whether or not you need steroids. It's a lot to take in though, especially when you don't feel great.

And there is never anything wrong with a second opinion!!!!

Hang in.......

 

[Rebecca29]

Thank you to both of you! @ AZmom, youre absolutely right that this is all a lot to take in. I have a paper full of questions for my doctor and second opinion appointment has already been made. I still have to wait til next week for the appointment and the end of the month for the second opinion appointment. That's why I'm going nuts.

and....That's why I have you guys

 

[BLM]

Hey Rebecca, I know what your going through...that was my story all last year. Pentasa and Entocort didnt work as well as drs had hoped, so now Im on Prednisone. Its a love hate relationship....it seems to be working, but not without other side effects. I wish you luck and hope you find a solution.

 

[Rebecca29]

do you mind if i ask your side effects? i know everyone is different but i am curious/nervous/scared, etc

 

[Lisa]

Rebecca - what part of NY are you in?......

 

[chrisnsteph1022]

On pred, I had night sweats, weight gain, mood swings. It was miserable. It worked, but it wasn't worth the side effects TO ME. This flare, I'm doing Entocort. I had a headache nightly for the first week, but that seems to have tapered off. No other side effects that I've noticed. It doesn't work as quickly or as thoroughly (or much at all so far-been on it almost 2 weeks), but it's worth a little extra misery to avoid pred in my opinion.

 

[BLM]

Ive gained 40 lbs in two months....Im very moody, I have insomnia, itch and sweat really bad at night. Coming off the pred has been really hard, I hurt really bad, every bone, every inch, every hair on my body hurts like crazy. BUT.....if it keeps the cd in check and me out of the hospital...its well worth it.

 

[Rebecca29]

wow....that doesnt sound good to me at all. especially considering the doctor isnt even 100% positive i have CD........... *sigh*

 

[spingirl]

Everything everyone says about Prednesone is true but for me - it also makes me feel better at the same time. Stops my flare and calms down my belly almost instantly. I deal with it short term as needed...yes I have a hairy face and I am sweating at night and my mood swings - I scare myself sometimes - but I am feeling like I am finally giving my poor bum a rest! Entocort didn't work for me...I wonder why...? Now I am tapering and when I am down to 1 Prednesone a day I feel much better than 2 and every other day will be even better. Praying that the Aza will work as well without the Prednesone. I hope you find out its not so bad and you don't have CD!