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Crohn's Disease
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Posted 11/25/2011 9:38 PM (GMT 0)
I've been going on 6 months now with Crohns. In August I had a bout of Sepsis followed immediately by Pancreatitis caused by Imuran, I was anemic at my diagnosis but since then I've managed to climb back up to the low end of normal. I've been on between 40mg and 10mg of Prednisone during my course, tapering down and then going back up because my symptoms return. I've also developed fairly intense anxiety as I try to deal with this. I take Xanax (0.5mg as needed) and Zoloft (50mg) for that.

For my Crohns I have 30mg Pred, 2000mg Pentasa, and just started Remicade. I also take Prilosec 2x a day and Carafate as needed for reflux symptoms. For pain I just take tylenol because luckily my pain is never very bad.

Lately however I think stress and anxiety are pushing me over the edge, I wake up feeling terrible like I dread dealing with yet another day, I'm very emotional and cry a lot, I left my job about a month after my diagnosis and doubt I qualify for disability finacially we're ok for now but my wife has missed a lot of work to help me and she could lose her job if I get worse. I'm nauseous and when I'm upset I start dry heaving but I never vomit. My chest is tight a lot and I shake. I'm always feeling weak. The xanax / zoloft don't seem to be keeping my feelings in check. I constantly worry about things. I've seen a psychologist so I have the tools to calm myself maybe I need to work on that more.

The anxiety causes pain and the pain causes anxiety. I have a feeling a lot of this is exacerbated by being on Pred for as long as I have... but I can't do much about it yet. I'm tired of feeling trapped, I'm afraid of the effects of the Remicade, even though I've done perfectly fine so far.

To top it all off my Crohns symptoms themselves aren't very bad. I have 2-3 BMs a day, little to no pain right now. When my appetite was normal I ate more or less what I used to without any noticable effects. It just seems now like its the anxiety causing all of my problems... I know its in my head but I cant get it out.

sad

 

Posted 11/25/2011 10:31 PM (GMT 0)
Hi, I'm so sorry you are having such a hard time. Prednisone is soooo hard on our emotions, and the worry about the disease doesn't help at all. Who is prescribing the xanax/ zoloft? You probably need to revisit that doc and see if it needs adjustment. I take .25 xanax at night to help me sleep when I'm in pain or anxious. I don't take it at all during the day. I find it very sedating. I might be oversensitive to meds, but if I take the xanax for too many nights in a row, I start to feel fatigued and depressed even in the daytime. You may want to keep seeing your psychologist if you think anxiety is driving most of this. You are relatively new to the diagnosis, so it's understandable that everything feels more scary now. A great self help book for managing anxiety is The Anxiety and Phobia Workbook, by Edmund Bourne. It gives you tons of tools to use to manage panic and anxiety. Keep writing to us too. For most of us this disease ebbs and flows, and you need to hang in there until you are feeling better. I hope this helps!
Posted 11/25/2011 11:10 PM (GMT 0)
I agree that the prednisone can really mess with us. I have been on some dose, low to high, for most of the last 23 years and have pretty much become steroid dependent. I know what games it can play, add in ANY amount of anxiety and you can be in a world of trouble. I really think you need to get in to see the doctor who is RXing the Xanax and Zoloft, you probably need to have the dosing changed. Possibly even change medications. It sounds like most of the CD is under control, or on the way to being under control with the addition of Remicade and then you will be able to get off the prednisone (hopefully). At that point, your anxiety should improve. Being diagnosed with a chronic illness is really hard to wrap your head around. It takes time to reframe the way we had envisioned our lives and see our new future. Give yourself some time and be gentle with yourself. Seek the help you need and know that we will be here when you need support and some one to listen.
Posted 11/26/2011 3:27 AM (GMT 0)
I'm sorry you are having a tough time. I experience anxiety, but when I'm on prednisone it is so much worse. Definitely talk to your doctors, and maybe there is something more they can do to either get you off the prednisone or adjust your meds for anxiety, or try something else.

I find yoga, and doing some medical hypnosis/guided meditation helpful. And it helps just talking about how you feel. I held stuff in too long, and now it can make a difference to vent here or to a friend.

Take care!

Sarah
Posted 11/26/2011 3:48 PM (GMT 0)
Yes I agree you need to talk with the doc who prescribed the Xanax and Zoloft. I take Xanax myself for those anxious times. But for example, I was given Valium first to take, but it gave me rebound anxiety the next day, thats why I switched to Xanax. I suggest trying another anxiety med, like Valium or Klonzepam or something like that. Sometimes just an adjustment in your meds will help immensley. Hugs!
Posted 11/26/2011 4:03 PM (GMT 0)
It probably is the pred, but like Gail said, sometimes if you switch your anxiety meds, it might help.
I'm taking Ativan (Lorazepam). This one works well for for me. Good luck!!
Posted 11/27/2011 6:35 PM (GMT 0)
Ishi , stress is really bad for crohns and not very good for any healthy body either . Talk to your doctor about something to help you deal with it . You can always wean off of it as you feel better . I do as little as 1/4 tablet of lexapro every other day and do fine most of the time . My PTSD does still rear its ugly head from time to time but the pills help . Hope you feel less stressed soon . By the way being Ishi is native american for , man , does that mean you are also native american ?
Posted Today 3:28 AM (GMT 0)
I was unaware of the native american meaning. I took it from the japanese for Rock.

I'm going to try Xanax 0.5 three times a day for now until I can get myself together. Been having some pretty intense reflux lately too, if my symptoms could just stay in one spot... which was normally just some abdominal pain I could deal with it. but I know Crohns hardly works that way. I have my second infusion coming up, I hope it goes well and starts kicking in.

Posted Today 3:46 AM (GMT 0)
Ishi,
You said it. When the pain is triggered the anxiety is triggered and when the anxiety is triggered the pain is. I actually cut my pain meeds in half when they found the right mix of medications for me.
Prednisone is so hard on your body. Have you tried entocort? It is a steroid also but it focuses directly on the intestine rather than the whole body. I have found a huge difference taking that. It's new and now has a generic available. I had to stop taking prednisone it made me crazy.
I also have discovered a fantastic anti-spasmatic called hyoscyamine and that has been a blessing. One pill dissolved under the tongue and the nausea and attacks stop almost instantly. Feel lucky you can have the remicade, I have developed anti-bodies so that is out for me.
But all in all I am doing better, a lot has to do with finding the right anti-depressant. Getting the anxiety and depression under control has been a huge blessing. Good luck, thinking of you, les
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