Remicade ----Crohns and Fistulas and Abcesses---Can we talk?
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- sheinfla
- gruppy
- sheinfla
- gruppy
- sheinfla
- Quiet_One
- ginhead
- hardwork
- acrowth123
- annaree
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» gruppy - sheinfla
Hi,Well, I think we're about to try a 2nd round of Remicade in my case, so who knows? Maybe once is not enough and twice will do the trick...3rd time's the charm?? Hopefully, it won't take a 3rd time...
This is a terrific board; the people are great, but there just aren't many who post here (I think I will pass this site on to the other places I have visited-why be exclusive when there is helpful info in multiple places?) You can get to the main site I know of by clicking on links on this page, then scroll down the page til you see the one about Mike's message board. There is also a Crohn's site at dreambook.com. I haven't checked it out myself, but hear nice things about it.
By the way, this is the first time I have attempted to post to your inquiry-I have been at work all day and just got online a few minutes ago. You can also email me if you'd like.
-- posted by gruppy
» sheinfla - email
Gruppy your profile doesn't give your email address. Are you on ICQ chat? I'm going to try the link you suggested right now. Have you tried onhealth.com? It's from Cleveland Clinic (my home town) and there is an interesting discussion that says the med is only good for a short time?!-- posted by sheinfla
» gruppy - email
sorry about that-I thought previously others had been able to click on my nickname and send email to me that way. Anyway, no, I'm not on ICQ. My email address is lamerritt67@hotmail.com.I saw your inquiry on Mike's board-my posts are shown from Lee Ann/Mississippi. Also, some of the others there have set up a chat room just for Crohn's disease at talkcity. Go to talkcity, and the room name is chronnieschat (deliberately misspelled.) There is a chat every Saturday night, 7 or 8 eastern time. with no real topic, just a lot of fun-saying whatever is on your mind, whether Crohn's or not. On Wednesdays at the same time, there is another chat, and those usually have a topic/speaker/question and answer session. Those are the only scheduled chats in that room, but people have been seen popping in and out at other times, just for a quick boost. I like the chat-the boards are great, but sometimes, the real-time of chat is just what I need.
-- posted by gruppy
» Quiet_One - Remicade treatments
Just wondering if you went and had surgery or tried the Remicade? I just had my first treatment last week and it improved my bowel movements immensely but I am having so many side effects from the prednisone that I am not sure of what the actual Crohn's disease is doing to me. I have another treatment next week and hoping it will be more apparent.I like this site too and was wondering where the people went. Maybe it is a good sign that they are all on vacation and enjoying the weather.
I was curious as to whether anyone had any advice for me on something. When I had my resectional surgery two years ago, I was told that it is very rare that Crohn's comes back for years (sometimes 10-20 years). BUT what I see on the web doesn't quite follow. Does anyone out there have a happy story about Crohn's not being so prominent for long periods of time?
-- posted by Quiet_One
» ginhead - Had the surgery... Now what?
I had a Hemicolectomy a couple of months ago, and I am still somewhat symptomatic, although much improved. I still have severe diarrhea, which I've had for 12 years, and had for 11 years before I was diagnosed. My GI Doc has recommended Remicade Therapy, which I'm looking forward to, as I hear that it has shown to have good results in controlling symptoms. I'm just wondering: Will I ever produce a 'normal' BM again?-- posted by ginhead
» hardwork - Re: Remicade
In response to message posted by gruppy:Hi, I'm new here and suffer from Crohns but also abcesses (front part not behind), i have seen a gynecologist because of the place they are in but have been told they are crohns related. I have been trying to get info on these abcesses but with no luck and my doctor will not refer me to get them removed. Can anyone offer me any help or info. Also what is this Remicade, does it help Crohns. You can reply here or e-mail me sarahadley@hotmail.com - all replies will be welcome. I am 26 and have had crohns for 3 years and the abcesses for about 2 and a half years.
-- posted by hardwork
» acrowth123 - considering Remicade
I have been talking to some people trying to get information on Remicade and I wanted to hear from people who have actually taken it if it had helped them, if they would say to try it out. I personally have been dealing with my crohn's disease for the last year. I have been on steroids for a year and can't seem to get off of them. Every time I lower my dose I have to go back up. If anybody could share with me I would appreciate it. Thanks-- posted by acrowth123
» annaree - considering Remicade
In response to considering Remicade posted by acrowth123:Remicade has reduced my bm symptoms greatly. other than running a fever for several hours after treatment and sluggish the day after I really didn't have any side effects.
-- posted by annaree
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