I'm sooo happy to have found this site. Everyone I know seems to know someone in their lifetime who has had Crohn's Disease or Ulcerative Colitis and I've heard every simple cure imaginable. The problem is none of them have worked for me. I've come to the point that I don't even tell people what my illness is because I'm just tired of hearing it. :yrolleyes:. I have colitis, the tests will not show if it's Crohn's Disease or Ulcerative colitis. I have been on meds for over 5 months and if anything I feel even worse. Yesterday I was given a choice of surgery or Remicade infusion. When reading the side effects of Remicade I am terrified. I don't want to add more complication to my health. I am in constant pain, depression has set in big time. I cry like a baby and life has no meaning other than trying just to cope each day. I don't know what to do !!! If I have surgery I will need a total illostomy, permanent due to where my disease is located in different sections of my colon. :sign0085:
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Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Julie
- Thread starter posylady1
- Start date
Hi Julie :welcome:
Many of the members here have not found a simple cure for their IBD, you are not alone there.
I can't help you with Remicade, but I am sure that someone will come on who has experience with it. In the meantime, there is a section on Remicade/Infliximab in the "Treatment" Forum that might be helpful for you.
You will also find lots of people here with ileostomies - I have had a permanent ileostomy for 13 years. It has given me a new lease on life, and others have found the same thing. Again there is a stoma sub-forum that has lots of interesting and informative discussion.
Please feel free to ask any questions that you want - or just to vent. Nothing is off limits here. :hug:
Many of the members here have not found a simple cure for their IBD, you are not alone there.
I can't help you with Remicade, but I am sure that someone will come on who has experience with it. In the meantime, there is a section on Remicade/Infliximab in the "Treatment" Forum that might be helpful for you.
You will also find lots of people here with ileostomies - I have had a permanent ileostomy for 13 years. It has given me a new lease on life, and others have found the same thing. Again there is a stoma sub-forum that has lots of interesting and informative discussion.
Please feel free to ask any questions that you want - or just to vent. Nothing is off limits here. :hug:
Hello Julie, welcome to the forum and I'm sorry about your ongoing troubles. I just had one infusion of Remicade about to receive my second next Saturday, like you I was given the same choice and I opted for the Remicade. Personally I prefer 'to keep surgery as last resort. I had terrible reaction to my first infusion but I'm seeing positive effects out of it, my bowel movements are cut to half and I hardly see blood in my diarrhea and my skin is doing better. I'm not experienced with Remicade neither I'm so sure about it but that's my experience so far.
I wish you find what makes you feel better soon and keep us updated
I wish you find what makes you feel better soon and keep us updated
David
Co-Founder
- Location
- Naples, Florida
Hi Julie and welcome
I'm so sorry to hear of your troubles Your concerns and depressive feelings are understandable
*hugs*
Remicade can certainly be scary but it's also a wonderful drug for many people. The more serious side effects are pretty rare but it's certainly something everyone has to take into account when making a final decision. Please let us know what we can do to help, we're happy to do so in any way we can.
I wish you all the best.
I'm so sorry to hear of your troubles
Your concerns and depressive feelings are understandable *hugs*
Remicade can certainly be scary but it's also a wonderful drug for many people. The more serious side effects are pretty rare but it's certainly something everyone has to take into account when making a final decision. Please let us know what we can do to help, we're happy to do so in any way we can.
I wish you all the best.
Ah yes, Remicade. There's nothing like having a heart monitor attached to you while getting your infusion because they want to make sure nothing serious happens. It's scary. No way around it. But being sick is scary too.
Julie, I am so sorry for you. Yes, lots of people have IBD but it doesn't make it suck any less when you personally are facing two choices that seem equally unappealing. I have been on Remicade but I've not had to face surgery so I can't speak to that part. I do agree though that I would prefer to make surgery a last resort option because you can't go back.
Yes, there can be serious side-effects with Remicade, but surgery can be dangerous too. Research both sides as much as you can, make a decision, then be at peace with it knowing it was the best decision for you given the information you had at the time. The very best of luck to you.
Julie, I am so sorry for you. Yes, lots of people have IBD but it doesn't make it suck any less when you personally are facing two choices that seem equally unappealing. I have been on Remicade but I've not had to face surgery so I can't speak to that part. I do agree though that I would prefer to make surgery a last resort option because you can't go back.
Yes, there can be serious side-effects with Remicade, but surgery can be dangerous too. Research both sides as much as you can, make a decision, then be at peace with it knowing it was the best decision for you given the information you had at the time. The very best of luck to you.