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Hey, I'm new to this site I was diagnosed with UC when I was 16, But recently my dr. changed my DX to Crohns and I just have a question. I sometimes get these lumps in my perineum(?) area I have always thought they were ingrown hairs or something. They start off almost like a blister then they get really, really sore and swollen and then I know I probably shouldn't but I mash them and they are filled with blood and this awful smelling pus (sorry!)Then it will go away.But even if I don't mash them they usually end up going away after a while I usually get one or sometimes two a month. I was just wondering if anyone might know if this could be something to do with my crohns? I've never said anything to my dr. before because I wasn't sure if it was related or not? Any info would be appreciated.

 Reply posted for kelley411.

Wow! I feel like I'm reading my story, I too had the same experience when I was about 17 years old.  I am now 40 yr old and have been able to lead a somewhat normal life, married and have 1 child.  Thank God for an understanding husband!  Please tell your doctor and don't let them tell you they are anything other then fistulas.  My ob/gyn that my mother took me to back then said it was a sist and created many problems that are not reversable.  I have been on the remicade for roughly 9 years and it has been a god sent.  It now is just starting to not work.  In fact I have just returned from the doc. and he wants me to start cimzia.  I don't know if its because I'm older and wiser but I'm very hesitant to try it.  But I got to do something cus i'm now starting to get a new fistula and I already have 4 that drain constantly.  Here is my advise: Tell your doctor, and don't let crohns define who you are - meaning deal with the problems at hand and continue to live your life.  You have much life ahead of you and yes you'll have some down days but don't let it stand in the way of your dreams.  Good Luck to you!

 Reply posted for kelley411.

Wow! I feel like I'm reading my story, I too had the same experience when I was about 17 years old.  I am now 40 yr old and have been able to lead a somewhat normal life, married and have 1 child.  Thank God for an understanding husband!  Please tell your doctor and don't let them tell you they are anything other then fistulas.  My ob/gyn that my mother took me to back then said it was a sist and created many problems that are not reversable.  I have been on the remicade for roughly 9 years and it has been a god sent.  It now is just starting to not work.  In fact I have just returned from the doc. and he wants me to start cimzia.  I don't know if its because I'm older and wiser but I'm very hesitant to try it.  But I got to do something cus i'm now starting to get a new fistula and I already have 4 that drain constantly.  Here is my advise: Tell your doctor, and don't let crohns define who you are - meaning deal with the problems at hand and continue to live your life.  You have much life ahead of you and yes you'll have some down days but don't let it stand in the way of your dreams.  Good Luck to you!

 Reply posted for kelley411.

 Reply posted for kelley411.

Yup, it is part of Crohn's disease.  I too have had many myself.  Usually started off when my anus would itch uncontrollably prior to the fistula ulcer sore.  Then I decided to see if there was something I was eating that kicked it off.  I discovered soy, tofu, soy beans, brown rice would literally induce the fistulas.  I agree with everyone, you need to tell your doctor. Hope this helps.JB

 Reply posted for kelley411.

Wow...I have to admit your post almost just made me cry! For the past 8 or so months I have been experiencing the same thing though mine are located on my upper thighs, close to my....well...you know. At first sight I panicked and had every STD test done that they would let me. No STD THANK GOD! But still have these very painful "blisters" that come and go as they please. I just had one get so big and gnarly it looked like a giant blood blister. Haven't consulted a doctor however I am in search of a dermatologist. Anyways, thought you would again like to know that you are not alone...and I am so happy that I am not a freak of nature either!!!! For those of you who ave experienced this what did you do for them??? Is there a miracle cure? I am guessing that like all other IBD related problems they get better when you get your disease under control?

 Reply posted for kelley411.

that is where I always get my swellings :(.. it starts to hurt when I sit and stuff.. then... BOOM.. it swells to where I can't walk, lay down, let alone sit.

DO NOT IGNORE THEM... and most definitely do not take matters into ur own hands as u have been doing (wow!)... this is in direct corelation with the disease.. so you should definitely tell your doctor.

I think we don't tell our doctors or friends about stuff because we don't want to know the truth in many situations.  But this is not one where u can play that card.. talk to ur doctor sweety.

 Reply posted for kelley411.

I have had several perianal fistulas and abscesses, but I have never been able to drain them myself.  I have had some come and go on there own (I tried to ignore them before I was diagnosed), but they are always too deep to drain.  I have had at least one that broke through on its own and started draining.  I would definitely tell your doctor or find a colo-rectal surgeon.  Good luck!

Liz