marcie54

out of options

Posted on 03/26/08, 08:26 am

Hi, I have been suffering with crohns colitis starting in 1985, I have been on just about all the regular meds available, I have other health problems that prevent me from being put on Remicade and all those type meds and surgery is not the answer for me, the last flare up I had a horrible reaction to steroids. That was the only med that would help me get back in remission, at the time I'm doing ok but I know it won't last..I don't know what will happen with the next flare up. Has anyone faced this problem? if so what happened? Thanks, Marcie

• Reply #1 05/03/08  9:33am
  
  Mdews899
  You would think with all the advancements in medicine they would come up with some type of answer, i am just as frustrated as you, this isn't a "pretty disease" it is one most people do not want to talk about nor it seems does the medical profession.
• Reply #2 05/04/08  7:30am
  
  marcie54
  My problem with Remicade and such is that I have pneumonia at least two times a year. I fell and broke my foot the last time I was on 60mg of steroids for months, and it still is not completly well! thats because your bones will not mend well after being damaged so much by steroids..My GI doctor knows better than to want me to do that. I was in ICU on life support because of pneumonia and he wants me on Remicade! no way, my family doctor that knows me well told me I just couldn't handle those type treatments! he also knows my GI doctor, they both are good doctors, but I trust my own gut feeling about what I can and can't handle. I pray everyday to the good Lord to stay well enough to not have to worry about treatment..I'm really at wits end.
• Reply #3 06/27/08  2:56pm
  
  gemini2k
  I have been told that my Crohn's is more aggressive than most others. I have been on everything from steroids to remicade, and finally had to have surgery. Here I am six months later,and its starting again. I have had problems with every medication I've been on. The last one almost ruined my pancreas. They are suppose to pull out the "big guns" in medication starting next week. I'm nervous because of my history with the medications, but the flare-ups are horrible. All you can really do is pray that something will come along to help without the chance of awful side effects.
• Reply #4 07/31/08  1:50am
  
  AlanR
  Try 6-mp if you have not allready. The dosage is prescribed according to your body weight. It takes several weeks to achieve its theraputic effect. Ask your doctor about it. I am also on Pentasa, prednisone (soon to be off that though) as well as iron and calcium supplements. This current combonation seems to have me in remission. Good luck everyone..hope this helps

I have had Crohn's since I was 18yrs. old, and I have had 24 surgeries but only 2 related to crohn's. I was in ICU n 2001, and the only thing that saved my life was a colostomy pouch, which I have a love hate relationship with. I love it cause I a still alive, and I hate it because of the accidents, and no one understands, esp. men.