Perianal Disease?

[KimInterrupted]

Hi all,

I have been having ongoing perianal problems (abscesses, Fistulas, fissures) since 2010. In 2011 I had 2 fistulotomys and I&D of the abscesses then 5 months later, I had to have another abscess drained, 5 days later another. Antibiotics seem to keep them at bay if I catch them early. Most recently, not quite a month ago, a sphicterotomy and another fistulotomy. I also have an ongoing (since 2010 vulvar fistula) that occasionally flares into an abscesses. I just started antibiotics today because it is flaring. :stinks: I haven't allowed them to operate on it since its reacting positively to the antibiotics and because they said it could possibly leave me disfigured. No thanks.

I've had every test known to do and the docs still can't find anything though they still suspect it's Crohns. I'm very frustrated, and so are they.

My question is this: is it possible to just have perianal disease and not have Crohn's?

I have one doctor who thinks its Crohn's that is limited to the perianal area. One who thinks its actual Crohn's and a Gastro who says shes never heard of Crohns limited to the perianal area but if I can find info on it in a medical journal to let her know...ugh.

As a side note, I do have other symptoms that are Crohns like.

Thanks in advance for any help!?!?

 

[AlliRuns]

Hi, your case is very similar to mine. I have had multiple and complex fistulas since 2006; antibiotics no longer do anything for me and I have had two unsuccessful surgeries. I haven't had any other evidence of Crohn's; though recently (5 weeks ago) I have developed an area in my intestine that's extremely painful and ultrasound is showing to have increased blood flow which is indicative of early onset of inflammation.

I've seen multiple different doctors and have had doctor's tell me the same as you, that it's not possible, however, as the journals indicate, it is. My advice, get another doctor.

I haven't been officially diagnosed yet, though my doctor is processing my paperwork for Remicade this week; so it's pretty much a done deal.

Good Luck.

 

[KimInterrupted]

Thank you for your response. 2006, wow thats a long time! Im so sorry! It is soooo very frustrating feeling like we just treat one symptom after another and never figure out what's causing all the symptoms to begin with.

Do you happen to know what journal it's listed in? I would really like to look it up. I am going to see another Gastro here soon, I've lost all faith in my current one unfortunately.

I hope the Remicade works wonders for you!!

 

[AlliRuns]

I believe it was actually an Israeli medical journal, if I find where I saved it on my computer I will post it.

My current doctor is brilliant; he also discussed my case with his peers at the last Cdn IBD seminar just to make sure he was on the right track.

 

[KimInterrupted]

That's great, wish I could come see him too but I'm a bit too far away in Florida : )
I really appreciate you looking for that link, it would be a tremendous help to me. I've searched but can't seem to find anything not linked with Crohns.

 

[AlliRuns]

The article I found was perianal disease as the presenting symptom of crohn's. I'm doing grad school so found it from my school library search.

 

[AlliRuns]

http://www.springerlink.com.qe2a-proxy.mun.ca/content/465672803453604w/fulltext.pdf

This is the link, but i'm not sure if you can access it without a code. Trying to figure out how to post a document.

 

[AlliRuns]

There was also one from Israel, but I can't seem to open it anymore.

 

[KimInterrupted]

Yes it's asking for a login. I'm going to search the net again tomorrow. I will let you know if I find anything, I really appreciate you trying.

I definitely want to keep in touch too, I'm really interested in seeing how the Remicade works for you! Fingers, toes and everything else crossed for you!

 

[PaulsPain]

I was pretty much was in the same boat. I suffered with chronic fissures for many years and then got an abscess and fistula. One of the CRS's in the group treating me for fissures would always tell me "no" when I brought up Crohn's or something else since I could never understand why I couldn't heal the fissures. I then switched to the older more experienced doctor in the group. He suspected "Perianal Crohn's" right way based on how inflamed my rear looked. He said only 2% of people of Crohn's have it isolated to the perianal area. After I developed the abscess and fistula that is when I was referred to a GI. I never had any tests come back as positive for crohn's either. When I finally was scoped they did find a little inflammation on my ileocecal valve but that is it.

I started Remicade about a 1.5 years ago and it has done wonders - I can say I am almost "normal" after 6 years of torment.

I agree finding another GI doctor may be helpful.

Good luck.

 

[Gutsii]

Hey Kimphooey,


Sorry to hear about those flares.

I had a very similar issue about 1 year ago. I managed to stop the bleeding in about 2 days and my recent colonscopy shows no signs of disease around the anal area.

I talked quite a bit about the things I did to make it go away so quickly in this thread: http://www.crohnsforum.com/showthread.php?t=42981

I am interested to know more about your diet, if you are ok with sharing that information.

Also, if you would like to have a chat, feel free to shoot me a pm and I will do my best to get this problem solved

 

[AlliRuns]

I was pretty much was in the same boat. I suffered with chronic fissures for many years and then got an abscess and fistula. One of the CRS's in the group treating me for fissures would always tell me "no" when I brought up Crohn's or something else since I could never understand why I couldn't heal the fissures. I then switched to the older more experienced doctor in the group. He suspected "Perianal Crohn's" right way based on how inflamed my rear looked. He said only 2% of people of Crohn's have it isolated to the perianal area. After I developed the abscess and fistula that is when I was referred to a GI. I never had any tests come back as positive for crohn's either. When I finally was scoped they did find a little inflammation on my ileocecal valve but that is it.

I started Remicade about a 1.5 years ago and it has done wonders - I can say I am almost "normal" after 6 years of torment.

I agree finding another GI doctor may be helpful.

Good luck.

Glad to hear that Remicade has worked for you. I'm starting soon and crossing my fingers it works. My doc is even sparing me from having another seton placed for now to see if Remicade alone will help

 

[dgg]

Have you asked your doctor to test you for Crohn's? I am also an "unusual" patient in that I suffer mostly just from peri-anal issues (horrible fistula that won't heal). The first time I had this a flex sigmoidoscopy was done that came back negative for Crohn's but it was weird that I wouldn't heal up. Another doctor ordered blood work (I think through Prometheus) which came back and showed indication of Crohn's. I also had a colonoscopy and they did a biopsy and found that I had granulomas which helped them confirm it was Crohn's. Maybe ask about some of these other tests?