My frustrations - Abcesses, remicade and the viscious cycle

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farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 1/4/2010 3:51 PM (GMT -7)   
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.
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Waiting for Remicade IV to start next month


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/4/2010 7:42 PM (GMT -7)   

Yes, you can get your remicade when you have an abscess...they are part of your disease.  You need the remicade to get your disease under control and stop these abscesses/fistulas. 

I would call your surgeon get this new abscess taken care of asap, and then you can still get your infusion next Thursday. 

I have been on remicade for over 5 years, and it has given me my life back.  Hang in there.

 

 


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 1/4/2010 7:45 PM (GMT -7)   
Very good to know - I have an appointment with my surgeon tomorrow. I am very much looking forward to getting my life back too!
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Flagyl & Remicade to start January 14/10


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 1/5/2010 3:54 PM (GMT -7)   
Off for another 3 weeks - Surgeon says the lump I feel is scar tissue. Remicade next Thursday!
I've been on Flagyl for about a month now and recently developed thrush. I want to stop the Flagyl to get rid of the thrush but I'm paranoid that I will develop another abscess.
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Flagyl & Remicade to start January 14/10


mv4au
Regular Member


Date Joined Jan 2010
Total Posts : 37
   Posted 1/5/2010 9:40 PM (GMT -7)   
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!
31 year old female
diagnosed with Crohn's disease July 2006


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/5/2010 9:59 PM (GMT -7)   
I know a lot of people talk about it...but noticed you were on flagyl and developed thrush...a lot of people have been helped by taking a probiotic...eating yogurt...kefir...something with those little "active cultures"...you usually do this a couple of hours after the flagyl...cuz you don't want to kill the little buggers...anyway, I hope the remicaide does well for you...oh and the hair loss...goodness yesss!!!! Zinc seems to help a lot...I a proctitis type crohns too (with some stomach and mouth stuff...but mostly it's my bum)...
"The earth laughs in flowers"


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 1/5/2010 11:31 PM (GMT -7)   
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.
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Flagyl & Remicade to start January 14/10


mv4au
Regular Member


Date Joined Jan 2010
Total Posts : 37
   Posted 1/6/2010 7:25 AM (GMT -7)   
My abscess hasn't caused me any pain lately. I was on flagyl, levoquin, and predisone for about a week. I am not currently on anything except the Remicade. The doctor told me by my drop in white count it should be gone or almost!
31 year old female
diagnosed with Crohn's disease July 2006


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 1/6/2010 7:34 AM (GMT -7)   
Very good to hear! Here's hoping it works for me that well!
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Flagyl & Remicade to start January 14/10


mv4au
Regular Member


Date Joined Jan 2010
Total Posts : 37
   Posted 1/6/2010 7:36 AM (GMT -7)   
I hope it works for you too!
31 year old female
diagnosed with Crohn's disease July 2006


SherBear69
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 1/8/2010 11:32 AM (GMT -7)   
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
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 1/8/2010 9:20 PM (GMT -7)   
Things seem to be looking up for me. The pain is still there but the swelling has gone down.

Sher - are you still on Remicade?

I just keep thinking - 5 more days until my treatment.

I had to stop the Flagyl for a couple days for some relief - I slept all day yesterday and didn't want any visitors, much better today.
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Flagyl & Remicade to start January 14/10


dluchsin79
New Member


Date Joined Dec 2010
Total Posts : 2
   Posted 12/17/2010 8:54 PM (GMT -7)   
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?
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