An Update - looking for insight

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farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 12/3/2009 3:44 PM (GMT -7)   
Hello everyone!

I just thought I would provide you all with a little update.

October 14th went in for EUA and Seton insert with perianal abscess incision and drainage.
I went back to work on November 11th only to have my incision close and the abscess filled up again.
Back to my surgeon November 16th where she incised me in the office and set me up for another incision and drainage under anesthetic on November 23rd.
November 23rd surgeon performed incision and drainage - left me with a 3" incision. Much nicer for drainage etc and there is no way another abscess can for as the wound is shallow and no pocket can form.
The entire time I have been on and off metronidazole (flagyl) and have not found a decrease or improvement in drainage at all.
This drainage is now coming from the area of the seton which makes me believe it is coming from the fistula/bowels.
I saw my new crohns doctor on Monday of this week and he has scheduled me for a colonoscopy on December 18th - he told me that he needed to do this to get an idea of how much my disease has progressed and because it is policy for new patients coming to him. I told him that I had a colonoscopy last year - but he insisted that he had to do one. He also told me that Remicade is the treatment he wants to start me on.

So here are my questions:

Where is the drainage I am having coming from? Is it classed as an infection?
Can I still receive Remicade even though I am having drainage from the seton area?
Because he is prescribing Remicade right from the beginning - what happens if Remicade stops working? What comes after Remicade?
Is it normal to have some good days without pain and others where there is quite a bit of discomfort?
- 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: None as of yet


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 12/3/2009 3:51 PM (GMT -7)   
I don't know the answers to all your questions, but I do know Remicade is supposed to help heal fistulas.  I was on Remicade for a short time to help heal mine, but I ended up having an allergic reaction to it.  I would assume if Remi stopped working the next step may be Humira.

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings
Current Meds: Cimzia, Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: Nov. 20th to Take Down Abdominal Fistula!!!
 

farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 12/3/2009 9:19 PM (GMT -7)   
Well I'm hoping that the Remicade will do the trick for me. The doctor said I will be on it for life...?

I just wish I could get started on it now - I sure as heck hope it's before Christmas.

I don't know a lot about the drug and anyones insight on it would be great.
- 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: None as of yet


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 12/8/2009 5:53 PM (GMT -7)   
Feeling great 2 weeks out and my incision is healing very well! Nurses figure it will be completely healed by my return to work date of January 4th, 2010.
Would love to hear other success stories as well as personal experiences with Remicade.
- 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


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/8/2009 7:35 PM (GMT -7)   
Hi Farfrmnormal,

It sounds like you are doing great!! That drainage is quite normal. It is probably from the rectum/bowel, and may also be the wound clearing infection and healing. I am so happy the wound is closing so quickly! Many doctors are prescribing Remi first to stop the CD inflammatory process that is causing all the problems. I could tell right away that Remi was making everything calm down -- my immune system just chilled out. Unfortunately, I am one of the 1-2% that develops allergies. Five infusions and now no more Remi. If Remi looses effectiveness, the next drug is Humira (I'm allergic to that too), and then 6MP (which is what I am on now). Both Remi and Humira can help heal fistulae (not so much 6MP) so I am praying Remi really works for you! Hang in there! It will get better! It may seem like two steps forward and then one step back, but you are still moving in the right direction!

Take care!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted Today 9:00 PM (GMT -7)   
Thanks for the reply - I will keep everyone posted!
- 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


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted Today 9:29 PM (GMT -7)   
Hi Farfrmnormal,

I just wanted to share my Remicade experience with you. I was diagnosed the end of July and originally was put on Prednisone and Sulfsalazine. They did very little to calm things down for me, so my GI suggested Remicade. I had been in and out of the hospital for a month and was out of work, so though I was really scared of the side effects, I decided to try it. After my first infusion, honestly the next day I noticed my stools were firmer, and then in about a week, I pretty much felt good. I was able to get back to work a week after my first infusion, and I could eat pretty much anything without consequences. My GI also has me taking Methotrexate with it which is supposed to help you from developing antibodies to it.

I'm still really scared of being on it long term, and especially in conjunction with the Methotrexate, but I am thankful, because it helped me get my life back. I hope that you find success with it too! I can tell you though, that I am also worried about what happens next if the Remicade stops working. My GI was explaining to me that now most GIs think of the top down approach as far as the medication- which basically means, start with the big guns, because they have been shown to keep people in remission longer and out of the hospital. He did say that you can switch to other biologics, but he also mentioned he had a few patients who were on their last biologic...that was scary for me, especially since I was pretty recently diagnosed. But, hopefully the Remicade puts you in remission for a long time and you don't have to worry about that.

Good luck!

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 12/11/2009 5:51 AM (GMT -7)   

I hope this can make you feel at ease with Remicade.  Before Remi I was having around 8-10 BM a day with blood in them.  I had no energy and just wanted to lay in bed when I was home.

I have had 2 infusions now with the third coming next week.  I am having 1-3 BM a day with no blood anywhere.  I have no pain and no other reactions from CD (Acne, oily skin, etc)  I have so much energy now that my wife and I just got a 4 month old poodle that keeps us very active.

I don't know how long this will last but I an happy to be symptom free.  It has been years. My body is finally getting a rest from CD.  I don't worry about the future and if I will be on it all my life.  I just look at the here and now. 

Good luck and I hope you have great results with the Remicade.  I feel it is a miracle drug and wish I knew about it earlier.


36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 12/11/2009 11:20 AM (GMT -7)   
It's great to hear all of your success stories. I'm definitely anxious about starting the drug. Not anxious because I'm concerned about it, more anxious because the healing can't come soon enough for me. I've been off work since September and I just want everything to stop. Now I must say, I am feeling much better than I was before my surgery - but I just don't want to worry about the possibility of having another flare and ending up with another abscess.

I have always wondered about the Acne and oily skin - that's a side effect of CD? Hmm... very good to know.

There were days where I would spend at least half of it in the bathroom - 8-10 BM's in a 2 hours period, upwards of 30 a day. Now since going off Sulfa 5-ASA drugs my bowels have improved and I often go between 1 and 3 times (unless I eat something I shouldn't).

I must say I am looking forward to the day where I can eat something and not have to worry about it. Right now I am eating a very bland diet that consists of the same food every day (To avoid bowel upset). Oh how nice it will be to eat again and maybe put some weight on.

Keep the stories coming :)
- 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


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 12/13/2009 10:53 PM (GMT -7)   
So the last couple days I've had some pain from where the abscess used to be (where my incision is).

Is it normal to have good days without pain and then even though I am 3 weeks out of surgery have bad days too? Maybe too much poking and prodding from the nurses or from me pushing?

I find that I am always pushing around the wound to test for pockets where undermining may have caused another pocket to form. Has anyone developed scar tissue from their incision?

I've also noticed that the butt cheek that the abscess is on has lost a lot of muscle mass and fat. Is this normal?
- 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

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