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Regular Member

Date Joined Jun 2010
Total Posts : 318
   Posted 6/2/2010 10:13 AM (GMT -6)   
Hi, my name is Susan. I thought I had UC for the last 14 years. 10 years ago I had a j-pouch made and suffered from chronic pouchits since. It seems to be anti biotic resistance now and just recently got so bad that I ended up in the hosptial for a week. I was very sick. Now the GI thinks I might have crohns although I have no signs of crohns like abcess, fistualas, inflamation above the pouch-she is basing this on the fact that I had psoriasis years ago.
I was told in the hosptial that the only choice I had was either pouch removal or remicade. I got really scared so I gave the ok for remicade. I have had 2 infusions and the third is in 2 weeks. My scope showed that the remicade put me into remission but I have not been feeling physically any better. I feel like I have the flu all the time. I want to vomit, dizzy, I lost feelings in my legs and arms, fatigue. My GI is at a lost as to why I am not triving as she calls this my miricle drug-lol. In fact, even though I am eating I am still losing weight. My pouch seems to be ok. Until 2 months ago I was very active and now am a couch potato. I thought-ok, maybe depression or anixiety so I'm on a antidepressant and seeing someone for talk theraphy, I twich bad ( remicade? or nerves?-needed to take xanax last night to sleep.  I am seeing a neruoligist tomorrow. Maybe he can shed so light onto this mess. I am also seeing my surgeon next week as well. I have been in plently of remisssions so I know what it is like. I wonder how bad the remicade is screwing with my body or if it is just my head. I just do not like the person I have become and all my friend have told me that they notice something off with me. I am stressing having to go for another infusion (and be on them for life) if it is the infusions that are making me feel so crummy, or having an ostomy and if it is crohns then I quess dealing with ulcers and inflamation in the small intestines alsong with an ostomy.
Thanks for listening

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 6/2/2010 11:26 AM (GMT -6)   
Hi, Susan.  Welcome to the forum!  I'm sorry to hear about what you are going through.  I did not have any problems like that while on Remicade, but I was supposed to be in remission clinically while on Cimzia, then Humira, then Cimzia again but still having tons of arthritis problems.  Everything I read said that if your gut is in remission that the arthritis should be too, but that's not the way it has worked for me.  Now I think both are flaring, after about 4 years in "remission."  I have gone from working out at the gym for about 11 hours a week to not stepping foot in the gym for the last few months.  I completely understand that it makes you feel like you aren't yourself and others will notice that as well.  I hate to think that this is how my life will be going forward, as I always thought that I would get over this and get back to how life was, but it's been a year and a half now of continuous arthritis flare with no end in sight.  All we can do is take it day by day and have hope that things will get better.  I hope you get some answers soon as to why you are still feeling so badly.       

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Regular Member

Date Joined Jun 2010
Total Posts : 318
   Posted 6/2/2010 11:34 AM (GMT -6)   
Thank you Zena,
I am a gym rat too! and also hating to think that this is going to be life going forward!

Regular Member

Date Joined Feb 2004
Total Posts : 437
   Posted 6/2/2010 12:14 PM (GMT -6)   
Welcome to the forum!
I was on Remicade for a year and had those same symptoms as you. Flu like plus my joints were so bad i was walking with a cane. Eventually, I became so allergic to Remi having hives and reactions during infusion, they decided to take me off. I went into remission for 5 years of which time I wasn't on anything for my CD.
Now my CD is back and my doc has put me on Cimzia. I've had one dose now and had lots of leg pain and weakness for about 4 days after the shots. I think i'm just prone to side effects of these drugs...ugg.
Anyway, hope that helps. I've heard of several people on this forum having bad reactions to Remicade such as yourself. Perhaps Humira or Cimzia would be a better choice for you.
Good Luck!
Crohn's Disease Dx'ed in '02
Bipolar 1 Disorder w/Psychosis -Rapid Cycle

Cimzia, Abilify, Tofranil, Aciphex , Lisinopril, Allegra-D, Sustenex

Crohn's drugs I've tried: Remicade (put me into remission for 5 years), Entocort, Immuran, Prednisone & Questran powder.
Bowel Resection: 2002
Fistula surgery: 2003

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 6/2/2010 3:48 PM (GMT -6)   
Welcome to healingwell.
There is an ostomy section here too, be sure to check it out.

Regular Member

Date Joined Aug 2006
Total Posts : 29
   Posted 6/2/2010 4:29 PM (GMT -6)   
Wow, Susan - sorry to hear how things are going. Welcome to HW and keep us posted on what you and your Drs find.

Wishing you the best,
(not-so) Successfully In Denial of my Crohn's Disease since 1985!
Resection surgeries 1993 and 2004.
May 2010: Currently on Pentasa and enough Prednisone to revive a dead horse!

*Life is 10% what happens to you and 90% how you react to it."

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 6/2/2010 5:07 PM (GMT -6)   
So sorry for all you are going thru
do check out the OSTOMY site as was posted
this is a great place with very helpful n caring ppl
stay with us
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