My frustrations - Abcesses, remicade and the viscious cycle

I'm not sure how many of you have read about my story so I'll bring you up to speed a little

In September of 2009 I had a major flare which ultimately caused my first peri anal abscess. I had my first surgery to drain the abscess and insert a seton in October. My second surgery was a month later, again, to drain the abscess (the opening wasn't large enough and healed over too quickly). I saw my new GI at the end of November and the process for Remicade approval was put in motion. Things were looking great - I had 6 weeks to recover from my surgery and I was finally going to get this peri anal crohns disease under control.

Fast forward, 1 week before Christmas I had a colonoscopy so my new GI could get a grasp on my crohn's situation. He confirmed I have peri anal fistulaizing crohn's and said I have to get this Remicade ASAP. The week of Christmas (two days after my colonoscopy) I noticed another hard spot. My home care nurse kept a close eye on it because as the Christmas season approached it would be increasingly difficult to get in to see my surgeon. Last week I got my letter stating I was approved for Remicade and my loading dose schedule has been set up. So here is my concern... I have another lump forming (my original abscess incision is almoast completely healed and doesn't hurt at all) and I have been told that I cannot start the Remicade until I have the abscesses under control - if I do have another abscess I can't have the Remicade infusion and I'm set to have my first loading dose next Thursday. To add to all of this, I was supposed to go back to work today but I can't because this new lump is so painful (even on pain meds).

How do I beat the viscous cycle? Has anyone here ever had a remicade infusion with an abscess?

Next on my list is dealing with the D - It doesn't seem to matter what I eat anymore. Before the colonoscopy I was able to eat a very limited land diet of breads, chicken and turkey and I had formed bowel movements and was going only 1 to 2 times a day. I used to be able to control it quite well but since my last colonoscopy I can't seem to stop the D. What are you all doing for the D? I don't have crohn's anywhere but in the last 6 inches of my bowel - this makes me curious why I have D... I'm losing weight like a wild fire and I am really sick of living off of bagels and bread. Has Remicade helped those of you with D control it?

OK - Has anyone had problems with hair loss? My hair is falling out badly!

Finally - my sex life is virtually null, how can I re-capture this? any suggestions? Will Remicade help control my symptoms so well that I can get on with my life?

Thanks all - I feel like I'm at my wits end here and I don't know what I can do anymore.

Very good to know - I have an appointment with my surgeon tomorrow. I am very much looking forward to getting my life back too!

I spent the week before Christmas in the hospital. They found I had 2 fistulas and an abscess. Long story short all the doctors thought it would be best to try Remicade before doing surgery. I just had my second treatment today ( second one in 2 weeks). I have felt 100% better! In 2 weeks my WBC has come down from 26 to 9. Since the first treatment I have had the most normal bowel movements! I have only had 1 today! And I have not had diarrhea once since I started the Remicade. Before this I literally would have it 10 times a day. Hope this helps you some. So far I have been very impressed with the Remicade :) Hope you have good results too!

mv4au - how has your abscess felt since the remicade? Has it increased in size or caused you any more pain? Are you currently on any antibiotics for the abscess?

Becoming Undone - thanks for the tip on the Zinc. I think I am going to grab some tomorrow after my appointment with the doctor.

I really hope the Remicade works for the D - ever since the last colonoscopy it has been unreal. I suspect the Flagyl is the culprit for this as well. Flagyl never used to give me D, but I do suppose we can all develop some intolerance's to these meds as we are off and on them all the time.

Very good to hear! Here's hoping it works for me that well!

My only problem with Crohn's was also peri rectal abscess... never knew I had Crohn's until I develop this. Yes, I started Remicade back in 2002 while I had an active peri rectal abscess and it helped to heal it.

farfrmnormal, I have a situation that sounds similar to your original condition, and I have just received my first Remicade treatment. I was curious if you noticed an improvement over the last year. Has your abscess closed? If so, how long did it take to close after starting Remicade?