This is so frustrating

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LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 8/12/2008 5:01 PM (GMT -7)   
I got down to 10mg of prednisone last week and everything went haywire on me.  :-( 
My GI doc was on vacation and just called me tonight.  I told him I went back up to 15mg
in hopes things would settle down again and they haven't.  He called in Cipro for me.
So hopefully the Cipro will work so I can come down the prednisone again and get off this stuff
already!!!   I just want to cry.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 15mg and stuck
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/12/2008 5:46 PM (GMT -7)   
I'm so sorry to hear that..I hope the cipro works for you!! I know how frustrating it is to be dependent on prednisone.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec
Surgery for ectopic pregnancy in July of 2008.


brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/13/2008 12:49 AM (GMT -7)   
I feel your pain LBJ. I really do. I had Crohn's for over 10 years. Every time I was weaned down to a lower dose, I would flare up again and then I would have to take more. It was an up and down roller coaster. I hated that there was no cure. I had two colonoscopy's during that time. If you've ever had one, then you know the gallon of putrid tasting salty tasting liquid you have to drink to clean out your colon, and don't forget the occasional vomiting from drinking it. I had Crohn's. I don't ANYMORE. For the past 5 years this September 1st, I haven't had Crohn's at all. Notta, nothing, zero, zilch. No, I am not kidding. I can eat anything and drink anything. Nothing at all bothers me anymore. Let me know if you would like to know what I did and I'll tell you. If you don't want to know, then that's ok too. I tell people about what I did that got rid of my Crohn's and they don't tend to believe me? Why? I have no idea. Some have tried what I tried, and have had very good results. You might have the same results I had and you might not. All you have to do is try. You never know. I tried and couldn't be happier. I wish you knew my Mom or any of my other relatives and they would tell you that yes, I don't have Crohn's anymore, but I couldn't give out that info for obvious reasons. I could give you my Doctors name, address and phone number and you could ask him (if he would even tell you because of patient confidentially) that I haven't been seen by him since probably July of 2003. If you would like to send me an email to find out what I did, just click on my email link under and to the very left of my username brianm. Anyone is welcome to email me.


Brian

Post Edited (brianm) : 8/13/2008 10:26:21 AM (GMT-6)


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/13/2008 1:33 AM (GMT -7)   
I have emailed you Brian.

Diagnosis Oct 07 and then Aug 08: Patchy Ulcerative Pancolitis or Chrohn's Colitis to be confirmed after biopsy.
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate) for 30 days


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/13/2008 6:44 AM (GMT -7)   
Brian you are in what we call "Remission". There is "no cure" for Crohns. I once enjoyed a 20 year remission where I could eat what I wanted and had no problems with my Crohns too. And I was unmedicated. Do I think I was cured during that time? No, I was only in remission. And that's is all you are experiencing right now too.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/13/2008 9:20 AM (GMT -7)   
The thing is that I didn't slowly get over this and was in middle of a bad flare while taking 40 or 50mg's of prednisone a day. I had really bad bloody diahrhia and bad cramping. I tried something and two days later I had the first normal stool in over 10 years. I'm not going though remission. I don't have crohn's anymore and never will again. If I do, I will let you know but it won't happen.

Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 8/13/2008 10:48 AM (GMT -7)   
I'm extremely skeptical, especially since you're reluctant to post your method in public. Smells like some sort of scam/advertising mumbo-jumbo that you've gotten in trouble for before, to me.

Hang in there LBJ! I know how miserable Pred can be, hope you can get off it asap!
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/13/2008 3:45 PM (GMT -7)   
(((LBJ)))
Co-Moderator Crohn's Forum.


jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/13/2008 3:50 PM (GMT -7)   
Hi PB4!

I just wanted to say hi! Colitis Foundation has been down for quite awhile, huh? I asked the admin himself, and it sounds like the site has been down because he lost all info and hopefully someday will be back online. I sure miss that website! I also wanted to mention that I will be 5 years Crohn's FREE this September 1st! :) All because of Bee Propolis! I don't have it anymore! :)

Brian


i dont understand brian why you dont say that Bee propolis worked for you! anyone by looking on your profile will find out. i dont think its bad for everyone to share their experiences with various meds and natural remedies. and im very happy the bee propolis worked for you! i will try it too! nothing to lose.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/13/2008 4:46 PM (GMT -7)   
LBJ,
I know how you feel in regards to the pred, I have been doing this tapering for 5 years now without success, hoping you are more able than me to get off it. Good luck and hang in there - Jo

brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/16/2008 10:26 PM (GMT -7)   
I wasn't going to say anything jacenta, but you figured it out. You are a good investigator. :) Do you see what I mean by what Bane said? I wish I knew how to really convince people that no, this is not a joke, that yes I did have Crohn's, and I do not have Crohn's anymore. I had it really bad. I remember when I had gas that I could not even stand!!! OMG it smelt bad. I remember having diarrhea that was so red it looked like cherry Kool-aid. Diarrhea that was nothing but blood. I don't believe in "remission". But that's just my opinion. Maybe when you are on prednisone, metronidazole, pentasa, etc (which I took, or any other drugs), but it never truly goes away for any length of time. At least it never happened to me, until now of course. And nanners, you said you had a remission for 20 years??? :) I somehow don't believe you. :)
 
I just like to pass along to others what helped me. You could probably try it and not have any luck at all or you may have the same results. I've heard of people that tried it and it didn't seem to help at all and I'm not sure why. You would think that if it got rid of mine, it would get rid of anyones...
 
Brian

Post Edited (brianm) : 8/17/2008 8:22:52 PM (GMT-6)


jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/17/2008 3:16 AM (GMT -7)   
brian i have started on pentasa. should i stop it and go on bee propolis or should i take it along with it? how did u do it? did u stop all your medications?

brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/17/2008 7:29 PM (GMT -7)   
When I started taking Bee Propolis, I took it with what the doctor had me on and didn't have any problems. Bee Propolis isn't a drug and doesn't interfere with anything that I know about, but I'm not a doctor. I wouldn't think it would hurt any. It would be like saying, "can I drink milk with what I'm on". If you are allergic to milk you wouldn't want to, and if you are allergic to Bee's in any way, don't take Bee Propolis. Google Bee Propolis and see how Bee's make it, where it comes from, and why they make it and you might see why I thought it might help me and did. :)
jacenta said...
brian i have started on pentasa. should i stop it and go on bee propolis or should i take it along with it? how did u do it? did u stop all your medications?


jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/17/2008 9:18 PM (GMT -7)   
thanks brian! ill give it a try! i hope im not allergic to bees though! lol

brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/17/2008 9:36 PM (GMT -7)   
jacenta (and everyone else), please read this article I found at this website. It's a basic explanation of what Bee Propolis is, and it's a very good explanation too. http://www.beepropolis.info/propolis-info/propolis-basic.html

Post Edited (brianm) : 8/18/2008 12:13:53 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 7:03 AM (GMT -7)   
Brian, I will repeat one fact, THERE IS NO CURE FOR CROHNS!!! PB4 takes Bee Propolis but IS NOT in remission. She says so herself. The natural products she uses helps to control her symptoms, but has not cured her or put her in remission. Please be careful of your claims. You can claim to be in remission from it, but a 100% FACT is there is no cure for Crohns.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/18/2008 11:08 AM (GMT -7)   
And I will repeat. I DO NOT HAVE CROHN'S ANYMORE. :)
Nanners said...
Brian, I will repeat one fact, THERE IS NO CURE FOR CROHNS!!! PB4 takes Bee Propolis but IS NOT in remission. She says so herself. The natural products she uses helps to control her symptoms, but has not cured her or put her in remission. Please be careful of your claims. You can claim to be in remission from it, but a 100% FACT is there is no cure for Crohns.


Post Edited (brianm) : 8/18/2008 12:25:31 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 11:24 AM (GMT -7)   
Then you must have just had IBS! Crohns is a chronic and uncurable disease. If this bee propolis was a cure, don't you think PB4 would be cured by now. She is one of the biggest advocate for it, but to help control her inflammation. She will be the first to tell you and LBJ that she has never reached remission in 17-18 years of having the disease. So your supposed cure is not a cure.

Hopefully, she will be along soon to correct you. Brian I once enjoyed a 20 year remission that I basically forgot I even had Crohns. Ate anything I wanted and went on living my life like a regular person. It ended abruptly with an emergency resection due to a complete obstruction. So was I cured for 20 years? No, I was in remission.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/18/2008 11:27 AM (GMT -7)   
You are speaking from your experience. I am speaking from mine. I had Crohn's, and don't anymore.
Nanners said...
Then you must have just had IBS! Crohns is a chronic and uncurable disease. If this bee propolis was a cure, don't you think PB4 would be cured by now. She is one of the biggest advocate for it, but to help control her inflammation. She will be the first to tell you and LBJ that she has never reached remission in 17-18 years of having the disease. So your supposed cure is not a cure.

Hopefully, she will be along soon to correct you. Brian I once enjoyed a 20 year remission that I basically forgot I even had Crohns. Ate anything I wanted and went on living my life like a regular person. It ended abruptly with an emergency resection due to a complete obstruction. So was I cured for 20 years? No, I was in remission.


Post Edited (brianm) : 8/18/2008 12:31:33 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 12:16 PM (GMT -7)   
LBJ I would ask you use your best judgement here.

I believe scammers continually try to take advantage of us.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/18/2008 12:19 PM (GMT -7)   
I guess I'm confused. What am I trying to scam you out of? I've been telling about my experience with what helped me. Is that scamming?
Nanners said...
LBJ I would ask you use your best judgement here.

I believe scammers continually try to take advantage of us.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 12:25 PM (GMT -7)   
You are claiming something that even the researchers of the world have not found yet, a "Cure". Do ya think we would all be here looking for support for our suffering, if something as simple as Bee Propolis was the cure. PLEASE.............
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


brianm
Regular Member


Date Joined Sep 2004
Total Posts : 27
   Posted 8/18/2008 12:36 PM (GMT -7)   
If I could prove it to you I would but unless you knew me in person, that would be impossible. I'll quit talking about it for awhile since it appears to be offending you. I've said pretty much everything I've wanted to anyway. Modern traditional medicine doesn't have all the answers and also, if it did help everyone and they can't patent it, they ignore it. I wasn't saying here is the answer for EVERYONE. I was saying it helped me and it might help you. Have you read about propolis at all? Why don't you try it? Afraid that it might actually help? :) Bye...

Post Edited (brianm) : 8/18/2008 1:47:05 PM (GMT-6)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 12:50 PM (GMT -7)   
There is nothing wrong with sharing your good experiences with this product, but it's going a little far to call it a cure. Not only that but doing so can be detrimental to your own health in the long run if you think that you can continue to live normally. Living with this disease means taking all of the necessary precautions EVEN WHEN YOU ARE IN REMISSION or, in your case, think that you're cured. Treating bee propolis as a cure can only harm you in the long run..nonetheless I wish you well in those endeavors you DO take to stay well. Passing it off as a cure to people however can help no one. Sharing it as a complement to your overall crohn's treatment regimen on the other hand I can understand and agree with.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 1:21 PM (GMT -7)   
LMills very well said. Brian I am in remission right now again. If I felt I was not being helped by my medications and I needed to try something different, I am always open. I learned about Probiotics on this board from PB4, they have helped with my "d", but I have not been "cured". That is the statement I am arguing with you about (the cure). We have some seriously ill folks on this board, and I want no one to be deceived into thinking one supplement or diet will "cure" them. Your right it can't hurt to try it, but lets keep things in perspective, it will not cure them of their Crohns:)

P.S. I am not the only one who once enjoyed a 20 year remission. One of the moderators of this forum, Crohnie Too, once also enjoyed a 20 year remission. Only difference between her and I, is she had her emergency resection when she was first diagnosed and I had my emergency resection after my 20 year remission.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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