Diet and Health FAQ

Tagged As: Ibs Support Group

Question:
I have CD but also really bad IBS symptoms. I tried posting on alt.support.ibs but I got no answers and just today it said: This group is no longer available on the server. So, does this group still exist?? (I tried google groups but didn't see many postings). Is there some other group that I might get more responses on?? Please advise.

Answer:
What kind of responses do you want? How long have you had CD? �How long have you had the IBS symptoms also? I have active inflammation in my large intestine and they can not determine if it is UC or CD. �I have had a Prometheus test done and it shows that I have the genetic markers for both. �I also have IBS symptoms. I have been on nearly every medication that I can think of and sometimes it works for a while but then stops. �High doses of Prednisone is the only thing that seems to keep it in check. �However as we all know the nasty side effects of prednisone. �I was taking 60 mg a day for almost a year. �Then I started Remicade and was weaning off the prednisone. �I was finally able to say that I made it into remission for a while. �However, the Remicade seems to have stopped working also. �I have to wonder if it is the fact that the prednisone was flushing out of my system or if my body adapted to the Remicade. I have had what is ostensibly CD for maybe 15 years. Basically, colonoscopies have found inflammation in the terminal ileum and at times in the big colon. BUT, my major symptoms have been more of the bloating/C kind and they have gotten MUCH worse. I also sometimes get gnawing pain and just a certain inflamed feeling in my lower bowel. I am on asacol, 10 per day. That seems to help in some areas, but NOT with the C/bloating. Anyway, what answers do I want?? I thought my question was clear. Are there some online support groups ala alt.support.ibs?? It sounds like you are backed up with your bm's. I use Mylalax and in a few days things clear out. Don't know if they'll be able to help, but there's a fairly active group at: http://www.ibsgroup.org (click on Bulletin Board)You may want to try them if you haven't already. They have IBS and IBD sections. I didn't see a place where you can ask questions. Did I miss something? Check out Yahoo groups and/ or Delphi forums. Yahoo is free but you have to sign up. I myself never have received extra spam after I did that. On yahoo you can mark preferences if you want the messages coming into your mailbox individually, in digest form (grouped together giving you 1 email), or just read on the web site only. Delphi might charge by now a small fee but I am sure you first can find the groups without getting into costs. Yes, there is a Bulletin Board there where you can ask questions. There are quite a few people there discussing things. You have to register (free) to ask questions / post on the board, but to just read you don't have to register. Just go to: http://www.ibsgroup.org Then click on Bulletin Board (directly to the right of where it says Ibsgroup.org). When the page opens, you have to scroll down a bit to get to the Bulletin Board. The Irritable Bowel Syndrome forum is the main one, but there are various other related forums, too. Here's the direct link to the Bulletin Board (it may or may not work). If the page opens OK, �just scroll down to get to it: http://ibsgroup.org/eve/ubb.x?cdra=Y&s=500107