fistulatomy surgery

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exit 4
Regular Member


Date Joined Apr 2009
Total Posts : 148
   Posted 3/15/2010 1:31 PM (GMT -7)   
I had a fistulatomy surgery in October and wound has not healed up yet - goes to almost 95% then back to 80-85%. My GI wants me to go on remicade, tells me it’s my Disease that prevents full closure of wound. Surgeon tells me there is nothing else surgically that can be done. My BM are ok, not so much belly pain, but my anal area is pretty sore all the time, I am using proctofoam and Rowasa daily. I am scared to take remicade as I am THE person to catch all infections that come around.
Male, 45; UC 15 years, Lexapro helped with stress and UC.


KEANO
Regular Member


Date Joined Sep 2008
Total Posts : 76
   Posted 3/15/2010 3:34 PM (GMT -7)   
Hi exit 4,
 
I had continous fistulas in my anal area for about a year.  They never really healed and to be honest by butt was very very sore.  I went on Remicade and I can honestly say it changed my life.  It completely closed up the fistula.  My advice to you is to give it a go, you have nothing to lose and just imagine not having that soreness all the time. 
Hope this helps  smile

exit 4
Regular Member


Date Joined Apr 2009
Total Posts : 148
   Posted 3/15/2010 8:00 PM (GMT -7)   
Thanks for responce KEANO, but my fistula track has been cut out - fistulatomy in October. its the wound that is not healling, lots of pain in the anal area. I have no fistula anymore, do you still think Remicade can help?
Male, 45; UC 15 years, Lexapro helped with stress and UC.


KEANO
Regular Member


Date Joined Sep 2008
Total Posts : 76
   Posted 3/16/2010 4:22 AM (GMT -7)   
Ya I do think Remicade will help.  It closed up my wound completely.  It will take until about the third infusion before you know if it works (well that's the way it worked for me) I still say give it a go.  Let me know what you decide and best of luck smile

Ladekat
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/16/2010 7:48 AM (GMT -7)   
KEANO - How long have you been on Remicade and have you developed any problems taking it? My son (age 12) has Crohns and had an anal fistula. He was diagnosed in November 2008. He's on Remicade but I keep reading a lot of bad things about it and I just have an uneasy feeling about him being on this.

KEANO
Regular Member


Date Joined Sep 2008
Total Posts : 76
   Posted 3/16/2010 7:57 AM (GMT -7)   
Hi Ladekat,
 
I have been on Remicade for 5 years now and thank god no side affects.  I can understand your worry with your son as he is very young.  Has it healed his fistula ?

Ladekat
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/16/2010 9:46 AM (GMT -7)   
Yes it has healed. He had a cutting seton put in and also had a temporary ileostomy and started on the Remicade. He got the seton tightened once and before we went back to the dr to tighten it again it seemed like it was healing. The dr explained to me that it would cut through muscle and he had a chance of losing some bowel control. We talked about this and decided to take it out, which the dr didn't really too much like. He said it wouldn't heal if we took it out but he hadn't had any patients that had the temporary ileostomy and on Remicade. His GI dr has talked about doing a paper/study since it has healed while on Remicade and temp ileostomy. It seemed to really heal fast after the ilestomy was done. It's been 6-7 months now and he had his reversal of his ileostomy done in December. I've just started reading a lot on all this and would like to try more other things than just meds - but he's only 12 y/o and it's hard to get him to eat more healthier. (no junk food, etc.) He has done sooooo good since I have eliminated milk from his diet. We just use Almond or Rice milk. Don't really know if it's that or the Remicade really. It sounds like he's not as bad off as some on here. He was diagnosed the first month he really started having a lot of sxs - diarrhea multiple times a day x 1 month. After that and stopping milk and starting Asacol (doesn't take this anymore) he no longer has had the diarrhea. He did develop the fistula 3-4 months after being diagnosed which has been his main problem.
I know the doctors say that foods can't cause Crohn's but I wonder if it didn't have something to do with his. When he was first born he was hospitalized at 6 weeks and at 9 weeks for severe milk allergies. At first they didn't know what was wrong because he had diarrhea multiple times a day and then discovered it was the formulas. We had to special order it because it wasn't sold in the stores or the pharmacies didn't carry it. We were told he would outgrow it. Now that I look back I can remember even as early as 5-6 years old he would sometimes have to run into the house and have to go to the bathroom and sometimes wouldn't make it. (No diarrhea though) I just thought he wouldn't quit playing in time to make it.

KEANO
Regular Member


Date Joined Sep 2008
Total Posts : 76
   Posted 3/16/2010 10:21 AM (GMT -7)   
Hi Ladekat,
 
To be honest I think everyone is different, what works for one person may not work for another e.g. diet etc.  I think its all about getting the balance right.  I developed crohn's when I was 19 and medicine has come a long way since then.
I also find that reading up on stuff can be very helpful but it also can be scary, so I do understand your concerns.  I hope your little boy keeps healthy.  Unfortunately crohn's is something that he will have to live with, but I suppose there are worse things in life smile  Take care and god bless.

exit 4
Regular Member


Date Joined Apr 2009
Total Posts : 148
   Posted 3/17/2010 10:56 PM (GMT -7)   
KEANO, thanks for the advice.
I am going to try Remicade - hope it helps close the wound. How long did it take for your insurance to ok it?
Male, 45; UC 15 years, Lexapro helped with stress and UC.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 3/17/2010 11:50 PM (GMT -7)   
I had a fistulotomy before I was diagnosed with Crohn's, for a fistula. Let me tell you mine did not want to heal either. It stayed open for a solid year before it finally closed up. It was awful, but at least at that point it didn't hurt. But yes, once I found out I had Crohn's it explained why it took so long to heal up. My surgeon was fine with my slow healing, just kept checking on it here and there to make sure nothing was infected. I haven't had anymore problems since.
 
Good luck with the Remicade. The cancer risks scares me with those drugs (Lymphoma is in my family).


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Post Edited (Jen77) : 3/18/2010 12:57:53 AM (GMT-6)


exit 4
Regular Member


Date Joined Apr 2009
Total Posts : 148
   Posted 3/19/2010 6:49 PM (GMT -7)   
It’s been sooo painful to sit – I have to sit on one butt cheek on a cushion – that starting to kill my back, also after each BM my anal area hurts and sore – sits baths help a little. I think my Chrons/ UC moved down to my rectum from colon - I am feeling sore from my anus to left belly side. I am afraid to eat full meals now for fear of having BM, I know I have to eat, I am just freaking out. OHGGGG!!!!!
Male, 45; UC 15 years, Lexapro helped with stress and UC.


jjdmathnut
Regular Member


Date Joined Feb 2006
Total Posts : 23
   Posted 3/20/2010 9:08 AM (GMT -7)   
so sorry exit 4 - I've been there, not able to go anywhere without my little cushion :) I was on Remicade for almost 5 years; it didn't close my fistula but has kept it from flaring up again. I didn't notice any weakening of my immune system and never seemed to catch whatever was going around. As far as eating, I understand that too; I had an obstruction while I was pregnant and didn't want to eat b/c it caused such pain. I lived on protein shakes. Good luck.
diagnosed with Crohn's in January 2002
bowel resection in October 2005
in remission ever since, other than a perianal fistula that just won't go away...
Remicade April 2006 - December 2009
planning to start Humira...


Ladekat
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/21/2010 3:19 PM (GMT -7)   
jjdmathnua -   what kind of protein shake did you drink.  I would like to find something for my son but it can't have any milk products in it for him.  He will be 13 in July and only weighs 68.4 lbs.  Any suggestions on gaining weight?  Thanks!

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 3/22/2010 7:40 AM (GMT -7)   
Just an advise, if you are not doing it...

Don't wipe your butt!! you're hurting yourself....

Just Wash it (clean water) and dry.
 
-------------------------------------------
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 mg Imuran + Iron (sort of remission, not sure at all)
 

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