Getting discouraged.

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MAG102886
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Date Joined Jul 2008
Total Posts : 674
   Posted 8/25/2010 4:44 PM (GMT -7)   
about 3 weeks ago I went to the ER and was admitted to the hospital for a week.  I had been suffering from lower abdominal pain and nausea for about 3 weeks, it got so bad I stopped eating and drinking.   I was treated with IV pain killers, antibiotics and prednisone.  I was also told I had a UTI and that's what was causing the pain.  Personally I disagree with that.  I had a CT scan, and an endoscopy.  They showed that food was sitting in my stomach for long periods of time, and that I had Gastritis.
 
While I was there I also got to start Cimzia, and was released the next day.  I went home on a bunch of pain meds, and prednisone.  Two days after I was home my BMs were completely NORMAL.  I was going 1-2 times a day.  I knew in the back of my mind that my BMs were normal because of the pain meds and pred...but I held onto a tiny peice of hope that it was the Cimzia.
 
I'm 1 week off the pain meds and my BMs are 10x a day completely liquid, and the pain is coming back.  I feel so hopeless.  I've never been in remission in the 8 yrs that I've had this DD.  I have an appointment on Sept 9th with my GI, I don't even know what to say to him....I can tell how frustrated he is with me...not in a bad way, he just wants to help me but nothing works. =/

Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 8/25/2010 5:00 PM (GMT -7)   
Awww (((((MAG)))))

Maybe the Cimzia will kick in and you'll get some relief. I know how frustrating it is to be told tests are normal, and you know something has to be going on. It stinks. I also was in the hospital a few weeks ago for 6 days, and toward the end of my stay, I felt SO good because the pain meds helped so much. I went home and for about a week after I felt like crap. I felt like I got a glimpse of feeling good, only for it to be taken away.

Hang in there...and know we're here for you.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 8556
   Posted 8/25/2010 5:17 PM (GMT -7)   
I sympathise, but not a lot I can say to offer help, really :-/ I've been there, and I'm still there, but it doesn't make your disease go away. That is, I've had Crohn's for 10 years and have never been in remission, and this year I plumbed the depths of frustration and despair. Not because my symptoms are that terrible (tbh they don't seem that bad compared to a lot of people's, despite supposedly having really bad Crohn's), but because of the chronic, grinding relentlessness of them. When my doctor closed off one avenue of treatment after another, I raged for weeks, if not months, about it. Mainly silently, but with the occasional spillover elsewhere.

And now things aren't exactly hunky dory, but I do feel calmer about the future ahead with Crohn's. If you can't make the disease go into remission, then I think you need to start thinking about symptom management. For example, Questran or Loperamide for diarrhoea, altering your diet so you feel less pain, etc. You can also consider alternative treatments, eg radical change of diet, LDN, hookworm therapy (if you're rich), etc. If the pain is daily and very bad, you should be on painkillers, but I know doctors are funny about them - others here can doubtless give better advice on that front than I can.

Good luck... :-/

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 8/26/2010 8:45 AM (GMT -7)   
I feel sooooo bad for you. One thing I've learned in 28 yrs. since being dx is how frustrating this DD is! Do you think your Dr. would consider sending you to Cleveland? Is that even an option for you? Not sure what else they could do for you but sometimes another opinion sees something that is being overlooked.

Take care.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/26/2010 10:28 AM (GMT -7)   
I completely understand also. it's so hard to be sick day after day without the medications helping. How long have you been on Cimzia? I'm hoping it's early in your treatment and that it can still kick in and help you! I've been on it a year and a half now. Not sure how much it's helping, but I haven't been to the hospital in a year, so that's something. I'd go crazy without being able to take pain meds. feeling that pain day in and day out for years on end. They are what keeps me sane, though I hate that I need to rely on them. There is no easy answer ...

Hang in there! Hugs to you!
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 8/26/2010 4:22 PM (GMT -7)   
Thanks everyone.  It's nice to know I have a place to go to and everyone knows how it feels.
 
Lamb-
I'm wondering if I should ask my GI to send me to Cleveland.  I do trust him 150% ( I trust all the dr's at Presby), and I don't want to insult him by asking, but at the same time...nothing is working!  If the only thing that keeps me normal is pain meds and high doses of steriods then I'm in a world of trouble.  I'm considering asking him for pain meds at my next appointment...even though I know it's "taboo" in the GI world.
 
sr5599-
I just had my second round of shots on Friday, so it's almost a month.   I know sometimes it takes a while to kick in.  It's just so frustrating to get a taste of what "normal" feels like then have it ripped away. =[
 
This is seriously starting to hinder my life.  I do not eat from the time I wake up (7am) until I get home from work (6pm-8pm) because food goes straight through me...doesn't matter what I eat.  I take upwards of 16 immodium a day (prescription) and they do NOTHING.  Why is it that the only thing that helps me is pain meds??? I know they slow down the bowels...but isn't there something else that has the same effect?  I've been on Lomotil, I take Welchol...nothing has the same effect.
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