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I need some guidance. I a just so fed up with how I feel, I am tired ALL the time, i have no energy, i lack the want to do anything barely leave the house.
Since being diagnosed in 2013 I have been on steroids pretty much ever since, as soon as I try to come off them I get bad again, so Doc changes my other meds (Aza, 5ASA) then tells me to go back up steroids and slowly come back down again. This has been happening for the last 2 years. I am worried that I will never be able to come off steroids!! The only time I feel good is on high dose steroids,

I am fed up of feeling like crap, currently on 20mg prednisolone and although my symptoms are under control, I can't seem to get my mood under control. I have friends left right and Centre doing tough mudders/ironman triathlons/cycing events, etc,  all of which I wold love to do but I hate having to cancel events last minute. As I am often worrying about not being well enough to do it!

Does any one have any tips to feeling better in general? I have tried eating better, but the more veg I eat my colitis symtoms increase. Seems to be a trade off. I am not sure if I need a lifestyle change, nutrional advice, councilling or what.

Sorry for the garbled post, but I hit a low point today guys. Any advice would be appreciated.

Regards

R

 Reply posted for wallda.

I feel almost exactly the same as you! I can't do anything! And I have/had lousy friends, I guess, cause they've all disappeared since I can't do active things and have to cancel all the time. I've never gone into "remission". I actually suffer most from EIM's (Extra-Intestinal-Manifestations), specifically arthralgia. I'm in pain ALL the time. I'm sick every day. Worst of all, no one seems to believe me! They pay lip service to "everyone has different symptoms and experiences with Crohn's", but people literally don't believe me! I dragged myself out of bed an hour and 15 minutes ago, at 11:30am. I did a couple things and am back in bed. This is my daily routine. I get SO tired! I'm drinking 1-2 "5 Hour Energy"'s a day, + 1 or 2 cups of coffee (shots of espresso). And it doesn't seem to help, so I should stop spending the money. But I'm desperate! I'll try anything! Maybe I'll be able to get up in an hour or two, otherwise, I'll just give up for day. Obviously, I have no life.
I'm in pain all the time. I just heard someone say - of her father who takes morphine for his back pain - that to her, that's no different than some junky getting high. I'm so mad! The chronic pain is literally going to kill me. No one will treat it because of the stigma of narcotics. Any dr in the country will pump your body full of chemo, known to kill you. But everyone thinks the narcotics are "too dangerous"! I'm so mad! "Fed up!" Absolutely!
My only advice: get a dog. They make me happy. Every knows they provide great therapy. It can be almost impossible to take care of them, but at least it's something.

 Reply posted for rob123.

I am sorry you are feeling this way.  I know this disease has many ups and downs.  For a long time was was in a down.  But by hanging in, I have been able to overcome and live "close" to a normal life.  

 Reply posted for rob123.

I'm sorry to hear about the drug rollercoaster you are on. I can see how it would be hard to break the cycle, but you can and you will. The body is much more resilient than doctors (and ourselves) give credit for sometimes. I was diagnosed with UC in 2006, and was on Asacol for a few years and then switched to Delzicol. The side affects from both drugs seem to perpetuate my sickness (kind of like what's happening to you). I have since stopped taking the meds and now use marijuana to manage my symptoms. This is completely unorthodox and I do not advise you do the same until you speak with your doctor. But what I realized was that when I would smoke or eat marijuana, all my symptoms would go away. The urgency to go wasn't there, I went from 25-30 BM's a day to 4 or 5, I can sleep through the night, I can't remember the last time I saw blood and loose stools are few and far between. In all essence I feel normal again. I can go to a water park and not worry about where the bathroom is because I know I have it under control, and that's what this whole disease is about - control. I hope this helps, and please reach out to your doctor for their thoughts. It really has helped me.

Best,

R

I call prednisone the devil drug

Hi Rob,
You are not alone.  Connect with others at one of our support groups.  Find a support group at: http://www.ccfa.org/chapters/ .
 
One of our docs recently answered questions about steroids in the Expert Q & A Library.  Search the library for answers to your concerns about steroids, lifestyle changes and how to feel better in general.  You can also call the IBD Help Center at 888-694-8872 or email us at info@ccfa.org.  We are here to listen.  So feel free to talk as much as you want.  Sometimes talking it out can help.