I need advice and some feel-betterness...fistulas suck.

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not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 5/12/2009 12:32 PM (GMT -7)   

I have two fistulas that are ruining my life. It hurts tremendously to use the restroom and since one is connected to my outer labia it hurts to urinate too. Sometimes it hurts so much I shake uncontrollably for a few minutes in the bathroom. My sex life has gone to hell because of them and I keep waiting for my fiancé to throw in the towel. And the medications I’m told is the old standby for closing up fistulas is Remicade and I’m freakin allergic.

Right now I’m on 100 mg of 6MP and 20mg of Pred, this combo seems to be helping the Crohn’s- I have less D and only go one or two times a day and I have lots more energy but they are doing nothing for the fistulas. I cannot take Remicade, I tried Humira and it didn’t work. Is there hope for Cimzia? I am waiting for insurance auth so I can start it. I hate this; it feels like there is no hope once Remicade doesn’t work out.

If I only have Crohn’s in the last few cm of my rectum and no where else, wouldn’t colostomy be a cure? I know ostomies come with their own set of problems but to me, it seems preferable to the constant pain and ick that is peri-anal fistulizing Crohn’s. I know they wait till the very very last possible second for surgical options, especially for people my age but what about a top-down approach to the disease??


Laurenne, 24 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002
On: 6MP, 20mg Prednisone, Zoloft, Lialda and Imodium
Tried: LDN- Did nothing good, Remicade- allergic, Humira- no reaction


UKpup
Regular Member


Date Joined May 2005
Total Posts : 213
   Posted 5/12/2009 12:39 PM (GMT -7)   
Fistulas and fissures are awful! I've had three Fistulas that have abscessed. Remicade was just awesome for them until I reacted to it. I tried Humira, but it did nothing for me either. I'm on Cimzia right now. It healed up the fissure (about as wide as the docs finger). It recently has stopped working, so I'm getting ready to go on injections every other week. We'll see what that does for things.

The pain is intense that's for sure. I've done the shaking bit too. Hang in there and see what the Cimzia can do for you.

pup
The funny story of my first abscess


******************************************
"I've got a fever and the only prescription is more
cowbell." --Christopher Walken
******************************************


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/12/2009 2:17 PM (GMT -7)   
I am so sorry you are in such pain!! I think you and I have the same version of CD -- only perianal. I just hate abscesses and fistulae!!! The setons suck too except they keep me from abscessing.

Is surgery an option at all?? I doubt it but thought I'd ask to see if your doc had any bright ideas. I'm not happy with my doc's surgical options.

I too am allergic to Remicade. I'm also allergic to Humira. So there go the two best fistula-healing meds. It just sucks. I'm on 6MP too.

I am wondering if you have an infection. Are you running a fever of any level? Does it hurt when you touch or press that area?? I still get cellulitis occasssionally down there. Freaking painful is all I have to say. Levaquin does wonders.

Can you take flagyl? It can help heal fistulae. I took it for months and it helped, but of course, I now get peripheral neuropathy. So no more flagyl for me.

It took about 9 months for things to cool down after the last abcess. Things are much, much better now. Don't be shy about taking pain meds when you need to -- even in advance of using the bathroom. Even a quarter of a pill can take the edge off. Ya gotta do what ya gotta do!

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.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/12/2009 5:58 PM (GMT -7)   

Fistulas definitely do suck – are yours abscessing? When my fistula developed an abscess it was the worst pain I could ever imagine. I’ve just had mine drained and a seton put in. I am hoping to get onto some biologicals so that it will close in time, and am on flagyl and have been for a long time so I want to get off it soon as I hear it causes nerve damage. Abscesses and the pain they cause can be so debilitating, I hope you get some answers soon….

 

Are you happy with your colo-rectal surgeon and the advice he is giving you?

 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/13/2009 4:32 AM (GMT -7)   
Hi Phoebe -- How are you doing?? How you are healing and much more comfortable!
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.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/13/2009 4:40 AM (GMT -7)   
Hi Fallcolours! I’m doing pretty well, still in quite a bit of pain though. I try to go without neurophen for the pain but some days it’s just too tough. Sitting down and standing up are the hardest parts. Sleeping is ok I can sleep on my left side and if I slowly move over I can sleep on my back or my right side.... tummy is still best though ;)

I have my follow up on Monday so I’m looking forward to that.

It’s still draining a lot and sometimes when the pain is worse than other days it bleeds (?) I don’t know why this would be....
I guess these things just take time. I definitely in less pain than when it was abscessed and the first days after surgery, but the pain level seems to have plateaud now, guess it’s just slow to heal... I have to be patient.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/13/2009 7:30 AM (GMT -7)   
I third the Flagyl suggestion. It's been around much longer than Remicaid, and can be really useful for fistulas.

SherryAnn
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 5/16/2009 8:43 PM (GMT -7)   
Has anyone tried the Reishi mushrooms that someone on this site mentioned for anti-inflammatory purposes? Supposedly, it worked wonders for this person and my daughter is ready to try it now that she is off the flagyl, which didn't work for her abdominal fistula.
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