Update - Bad news.....

[MisB]

:crab:Hi Everyone....I'm thanking you in advance for letting me dump. Here goes.
Yesterday, family physician said all my symptoms were Crohn's related and made an appt with my GI for today. Went today and GI is increasing my Prednisone from 25 to 30 mg per day, doubling my Prilosec, and adding an immune suppressant. He did not have the results yet from the CT they did in ER Saturday night until after I left. After I got home he called and told me he got the results and the Crohn's is more inflammed than the last CT that was done in May. Make sure and increase the meds as he said, watch my diet, and see him in 3 weeks, after I have my next Remicade treatment in 2 weeks.

I was just getting use to not having the massive reaction to the Prednisone, and now I have to up the dose.:voodoo: I took my first increase dose when I got home and I'm already feeling it. I'm getting so tired of the pain and all the drugs. He also wants me to contact the Mayo Clinic in Jacksonville. I did a web search and there are 3 Mayo Clinics that deal with Crohn's in the U.Ss, and one of them is only about 3-4 hours away. I guess that's a good thing.

For right now, I'm tired because I've gotten my days and nights screwed up with all the muscle relaxers and pain meds and coma-tose, drug induced sleep, and even with pain pills I still hurt. I think I'm going to go take a shower, find something soft to eat/drink for dinner, and get ready to make a bunch of calls tomorrow.

Sorry I'm so grumpy tonight and thanks for being here. You guys are spoiling me. Most of you have had surgergies, stoma's, and all kinds of things I'm still learning about and I'm complaining about a little pain, discomfort, taking pills, and possibly having to go to a hospital out of town. Yet, I know I can come back here later and find all kinds of good words waiting for me. :ghug: All of you are the very best!!!!!!!!!!!!:hug:

 

[fromthegut]

Sorry to hear you are disappointed MisB. Glad that you have this place where people will listen.

 

[Cat-a-Tonic]

Hope you get some relief soon, Bev. Sorry to hear you're still doing so poorly. I can't offer any advice but I can offer kind words. I'll keep you in my thoughts! Sending lots of hugs your way!

 

[Crohn's 35]

OH Bev, I am so sorry you are going through so much and so many meds. I am surprised the Remicade isnt working. For some it is a miracle worker, some not. So has the word surgery come up in any conversations? Just curious, hope you start to feel better...enough is enough right? :hang:

 

[belle1999]

As Pen said...:hang: we'll be thinking about you and sending good thoughts your way. I hope you get some relief soon!!

 

[Procyon]

Sorry you're having such a rough time. Hope things get better for you soon!

 

[Jeff D.]

So sorry to hear that. At least you understand what's going on. I'll be keeping you in my prayers.

 

[MisB]

You all never disappoint me. Got my shower, ate dinner, and came back to all of this wonderful support. I really feel the love here!!! :ghug:

Pen - He mentioned surgery when he recommended I contact the Mayo Clinic for a second opinion. I'm calling them tomorrow.

I commented on a new post from a man earlier, can't remember his name, but he's new and his story reminded me of me. It feels good to chat with other people who are going through the same thing. I wish my memory was better, but with pain pills and muscle relaxers my brain is mushy. And it makes me a chatter box.:ytongue:

Thanks for the thoughts, prayers, good wishes, and overall general support. I'm trying to stay positive, but the symptoms and test results are getting hard to ignore. This forum is becoming a life-line for me and I really appreciate it. Ya'll help me keep my spirits up. I'll try to keep ya'll updated without sounding too down.

Tomorrow is a new day full of hope and promises!!!!!

 

[Keona]

Hi Bev,
I hope things improve for you soon. Sounds like the Mayo clinic is the best place to go. I have heard several people on here make positive comments about it.
Hope you have a good sleep and good luck tomorrow!
Wendy

 

[whysoserious]

I'm sorry you had to up your meds, Bev. I really hope you feel better soon! That's great news about the Mayo clinic being so close though! Have you talked to them yet?

 

[theend2]

I really hope you find some kind of relief and meds that work. I have the same problem the only med that works is prednisone. I had gone for a second opinion in Boston where the best doctor as suppose to be right well the GI doc I got was really a nice guy but all of what my local GI doc had done was right on point so that was a relief knowing that I have been treated corect but the Boston GI said there is nothing more to do but to stay on long term prednisone or unfortunately consider surgery. So I am waiting to see if something new comes out next year. Sorry for taking over your post but know your not alone and we are praying for you.

 

[Astra]

Hiya Bev

sorry you're still feeling rotten, really hope the higher dose of Pred gives you some relief soon, thinking of you, and make sure lots of rest and pampering!
take care
xxx

 

[Sue-2009]

Awe...Sorry you are still struggling! ITs a journey with this darn crohns! We are here for you...thank you for sharing with us...Sue

 

[ameslouise]

Oh, Bev, I'm so sorry to hear that you have to up the pred and that the Remi doesn't seem to be working.

I hope you get some relief soon. Fingers crossed that the pros at Mayo can get you fixed up!

Hang in there! - Amy

 

[Dunbar]

All will be well, lovely lady. Good thoughts and hugs are being sent your way.

 

[Pincushion]

(((((((((Beverly)))))))))

You are in my thoughts xx I hope things start to ease for you soon xx

 

[Hungry]

Have you tried Humira?

 

[RichardSchulz]

:crab:Hi Everyone....I'm thanking you in advance for letting me dump. Here goes.
Yesterday, family physician said all my symptoms were Crohn's related and made an appt with my GI for today. Went today and GI is increasing my Prednisone from 25 to 30 mg per day, doubling my Prilosec, and adding an immune suppressant. He did not have the results yet from the CT they did in ER Saturday night until after I left. After I got home he called and told me he got the results and the Crohn's is more inflammed than the last CT that was done in May. Make sure and increase the meds as he said, watch my diet, and see him in 3 weeks, after I have my next Remicade treatment in 2 weeks.

I was just getting use to not having the massive reaction to the Prednisone, and now I have to up the dose.:voodoo: I took my first increase dose when I got home and I'm already feeling it. I'm getting so tired of the pain and all the drugs. He also wants me to contact the Mayo Clinic in Jacksonville. I did a web search and there are 3 Mayo Clinics that deal with Crohn's in the U.Ss, and one of them is only about 3-4 hours away. I guess that's a good thing.

For right now, I'm tired because I've gotten my days and nights screwed up with all the muscle relaxers and pain meds and coma-tose, drug induced sleep, and even with pain pills I still hurt. I think I'm going to go take a shower, find something soft to eat/drink for dinner, and get ready to make a bunch of calls tomorrow.

Sorry I'm so grumpy tonight and thanks for being here. You guys are spoiling me. Most of you have had surgergies, stoma's, and all kinds of things I'm still learning about and I'm complaining about a little pain, discomfort, taking pills, and possibly having to go to a hospital out of town. Yet, I know I can come back here later and find all kinds of good words waiting for me. :ghug: All of you are the very best!!!!!!!!!!!!:hug:

Sorry to hear things have got rougher for you. Gotta love that Prednisone! :crabby1:
I think you have the right to Dump here...:hallo3:...Its my opinion that many times its much worse being a Newbie to Crohns. Being kind of a veteran the illness, I have had time to grow accustomed and adjust to living with Crohns, some things are never pleasant but we learn to live with or around them. Remember the surgeries and all help so for instance with me I don't have to any longer deal with some of the effects of Crohns that you do, so I guess what I'm saying is B*(%^ away.