Peri-anal disease - Does it ever heal completely with meds?

[PaulsPain]

I have mainly peri-anal disease. Currently, I have a draining seton in and a fissure that has been mighty painful lately. I had an LIS last year that helps with fissures but I can't seem to rid myself of them. I am so tired of butt hurting every day.... I started Azathioprine back in December after my official diagnosis. So far I can't tell a difference in my rear end. I just had to drop my dose since my WBC was to low.

I have been searching the forum and can't get a good consensus. Basically, I am trying to figure out what to expect if the Azathioprine actually works.

For those of you that have had chronic fissures. Did medication finally bring healing? If not, what other methods have you found effective?

How about a fistula? Did it stop draining before they pulled the seton? I am still getting copious amounts of drainage that requires me to wear a pad. It sounds like Remicade heals fistula's quickly. When people say they "close" - what does this mean in terms of symptoms? I am completely confused on what to expect with this fistula since this is my first needing a seton. My other was layed open.

I finally had some hope I may rid myself of this daily pain with medication. I see the GI in June and I assume the next step will be Remicade if the Azathioprine isn't working. So that will be my next big decision.....

Thanks for any input/insight.

 

[Mark63]

Hi Paul,

Sorry to hear that this is still causing you pain. I'd like to be able to tell you that it will all be ok with the drugs, but I need some convincing myself. Tried Aza, Remicade and now onto Humira. I still have constant pain and leakage. At times I find it a bit of a struggle as this has been going on for six years. That having been said, I'm seeing a really good team of Doctors and they are not ready to give up on things yet. Probably going to move to weekly Humira and if that does not cut it, Methotrexate as well. So there is still hope.

They may consider pulling the seton if there's no significant drainage for a period of time. A fistula can close completely I.E. The track closes up. Sometimes there is a residual track that only leaks a small amount/infrequently. In my case the plan is to keep the seton in place long term and change it periodically. It sounds to me that you probably need some antibiotics (Flagyl/Cipro) to get the underlying infection under control and reduce the drainage.

A combination of surgical drainage and drug treatment seems to be the best way to go. Surgical only solutions such as fistua plugs, Fibrin glue and advancement flaps have a poor success rate in Crohn's patients according to my Surgeon. Drug only solutions often fail due to abscess or further fistula track formation.

I wish you well and hope that you find more comfort soon.

Mark

 

[Bill41]

That's what I was on in 2005 for my fistula and sepsis...Cipro and Flagyl...made me poop dust.

 

[PaulsPain]

Mark63-

Thanks for the feedback. My CRS told me that he wouldn't attempt surgical options with the fistula since they fail most of the time with Crohn's. I saw him about about 1.5 months ago and he thought every thing looked good - not inflamed. Nobody has mentioned Flagyl even when I bring up the drainage - although I hate Flagyl.....burning stools with my mouth tasting like I am sucking on a piece of iron.

It is the fissures that I would love to see go though. I can live with a seton the rest of my life if needed but the fissures are the root of all my pain for 6 years now. It is better since having a LIS but I still have days of constant pain. I always have pain after every bathroom trip.

I noticed you were DX'd in the 80's. Have you always had the peri-anal disease component? Or did it spread to that area?

Bill41 - Ya, I have taken Flagyl on two separate occasions. Doesn't agree with my system very well either......

 

[RFarmer]

Ahh.. This is definitely something I know about. I started with minor stomach problems, then minor perianal problems, then bad stomach problems, then bad perianal problems.

I had a seton in just two weeks ago. I find... nothing helps. Then again, I sit all day at school, which really isn't good for it.

But I still wish you the best of luck! If you find any relief, be sure to keep us up to date!

 

[Lisa]

I dealt with fissures for years with no 'treatment' from my doc- guess they weren't bad enough to warrant any...then developed fistulas in 2003-04 which were finally healed with Remicade.....as far as the healing - I have no symptoms of the fistulas, no leakage etc.....but do have thin/ender skin from the repeated fissures...that I just try to be careful around.....

 

[glum chump]

Perianal disease has really plagued me throughout my diagnosis...fissures, fistulas, abscesses. For the first time, I am having to deal with a recto-vaginal fistula which brings its own mini-nightmares. I was diagnosed in 2002 and had my first fissure in 2003. The fistulas started in 2004. I get them about twice a year.

My method of dealing with the fistulas and abscesses is to hot compress, hot compress, hot compress to get the fistula draining. When it pops and all the gunk starts to drain out, I begin to feel a bit better. But at the same time, I'm always on a combo of antibiotics from my GI---I take Flagyl (250mg three times daily) and Clarithromycin (500 mg twice daily). I take the antibiotics for either 10 days or 14 days. This usually helps keep things from getting further infected and actually helps close the fistula (and the draining stops). Agreed, though, with everyone that the antibiotics are NASTY.

As for fissures, the only thing that works for me is Diltiazem 2% that I get at the compounding pharmacy. I apply it on the fissure and the surrounding area. It soothes and helps seal things up so it doesn't feel like shards of broken glass or like little knives cutting at me.

In terms of meds, Aza didn't really do anything for me, but Humira helped keep the fistulas away for almost a year. I had a strong allergic reaction to Remicade so don't know if that might have worked since I had to be taken off Remicade. At this point, I'm having an ileostomy and with the rectum and anus getting a chance to 'take a break,' my GI and colo-rectal surgeon are hoping it will rid me of the perianal disease.

I really do hope you find some relief soon, PaulsPain. The perianal stuff is so frustrating to cope with.

 

[joshw2011]

I've had a perianal fissure for several years now and it's still there... According to my doc the several years I was on Remicade it got better, but I have not noticed any differences. Tried Remicade, a few different creams, warm baths, but nothing has worked. Seen a surgeon twice and he said surgery would be fine, but they never operate on Crohn's patients. So yeah... seems like something we'll just have to deal with. But who knows what new meds will come out!

 

[Mark63]

Mark63-
I noticed you were DX'd in the 80's. Have you always had the peri-anal disease component? Or did it spread to that area?

Hi,

It started out with constant D cramps and weight loss. Initial diagnosis was IBS and the antispasmodics they prescribed had no effect. Eventually had a sigmoidoscopy and biopsies from the rectum showed Crohn's. I had Sulphasalazine for 18 months and that put things into remission. The abscess, fistula and fissure problems started out of the blue, 6 years ago almost to the day. I did not show any other symptoms that I had previously.

I can live with the seton, just wish I could get rid of the constant pain in the perianal area and my legs. Because I otherwise look fit and well people seem not to believe that you have a significant health problem. They think again when I tell them that I've had 10 surgeries in the last 6 years and expect to have more in the future.

Mark

 

[lisarae]

I have had fissures off and on through the years. They always responded really well to nitro and cortifoam; and they usually healed within a couple of weeks. My Crohn's was discovered after the fissure, also after being diagnosed with IBS and told to "eat lots of fiber," which I did, and Surprise, Crohn's got really aggravated! I was on Remicade for three years, it worked great, until it stopped. Then I went on Cimzia, which I am currently on, and it worked great, until now. I have a couple fissures right now, and I have terrible diarrhea. The doctor still has me on Cimzia, added Rowasa enemas, and Canasa suppositories, Flagyl, prednisone. Nothing has helped. I am currently eating bananas, rice, applesauce, and toast, and trying to stop the diarrhea, which makes the current fissure hurt like a blankety, blankety, blank. I think I'm doing better for a little while in between going to the bathroom, but then it's incredible pain after trips to the bathroom.

My doctor wants to do a colonoscopy, and I've had a bunch of them, and they don't ever scare me. BUT, this time I'm really worried because this one is going to hurt. I know it's going to open this fissure up even more, and it's going to kill me. If the cleansing alone doesn't aggravate the heck out of the fissure, certainly six feet of scope moving back and forth across it is going to. I keep putting the doctor off, hoping I can get the stupid thing to heal, but not having any luck at all.

I am going to the Cleveland Clinic in Weston, FL to see a gastroenterologist and a colorectal surgeon. I'm sure they are going to want to do a scope too. Just wishing someone would offer a test that won't hurt to see what is going on.

I work, and I've missed a bunch of days just because it hurts too bad to sit or stand. Laying down on my right side is the only comfortable position to be in. I agree with Paul and Mark that if I could get rid of this butt pain, I would be so happy.

 

[Mark63]

Hi,

Welcome to the forum. I'm sure that you will find the help and support that you need on here. They are a great bunch of folks.

Sorry to hear that you are having a bad time. It certainly sounds as if things are not working at the moment. Let's hope to the trip to the GI and the Surgeon come up with something positive in the way of a treatment plan.

In my case, the pain seems to be something that just has to be lived with. No treatment has really helped so far. Some days are better than others, so you just have to do the best you can to conduct as normal life as possible. I'm lucky in that I have a supportive partner and employer. I know that many people are not in such a fortunate position.

It's good to meet you. I'm sure your experience will be of benefit to others. Have you thought about posting in the "Your Story" forum?

Mark

 

[lisarae]

I will post my story soon. As is I'm sure the case with so many of us, it's a long story...