Community Forum

HI,

MY NAME IS PATRICIA AND I HAVE BEEN LIVING WITH CROHNS DISEASE FOR 29 YEARSNOW. I WAS RECENTLY IN THE HOSPITAL FOR A FLARE UP AND WAS TOLD I ALSO NOW HAVE VULVA CROHNS DISEASE, WHICH IS VERY RARE. HAS ANY ONE DEALT WITH THIS OR KNOW SOMEONE WHO HAS THE SAME?

Reply posted for lss.

Did any medicine help u?

Reply posted for patricia.

Did anything work? I have the same thing going on now.

 Reply posted for PATRICIA.

Wow, after reading all of these posts, I wonder if that is what I have had for the past 2 years. I was told by 2 of my Gyn's that it was herpes and then shingles, but none of the blood work came back positive for either. However, I have been on Humira and shingles is one of the side effects. (there is such a thing as vaginal shingles)  I have been taking valtrex when I have a flare up and it does seem to help a lot. I take a gram a day. The Gyn...says it must be some unusual flare up due to my supressed immune system. Now I am wondering. I have also had the fisulas and fissures...none of them have been fun. It is good to network with other patients...it makes me feel better.

 Reply posted for Katrinaj.

I also have sores in my vaginal and anal area and skin tags around my anus.  Add to that a recto-vaginal fistula so with all the loose stool I am a mess with it coming out everywhere. All I want is for it to go away.  Does anyone know any kind of treatments that help with the sores, topical or otherwise?  I know that surgery is an option for the fistula but until the CD is under control it isn't even an option.  I am on Humira, Imuran, Cipro, Tindamax and no improvement of the vaginal/rectal symptoms at all.  To make matters worse, if I have to go to the bathroom, I have to go and if I don't make it well you all know what happens.  I wear pads, which have started to irritate me because I wear them all the time. 

I can get through all this I know but now I am about to see someone I haven't seen in years- we used to date a long time ago- and are definitely heading down that road again.  How do you explain to someone you want to be intimate with that you have a rear end covered with skin tags, poop can ooze out of your vagina and things are generally not the most attractive down there?  This is so embarrasssing- I want to be a normal, sexual person and not sure how to with this.

 Reply posted for PATRICIA.

I too have been diagnosed recently with Metastatic cutaneous Crohns along with the Crohns that is in my small intestine.  Metastatic means it is found outside the GI tract, cutaneous has to do with skin. 
3 years ago my GYN gave me estrace cream for the tears (felt like a paper cut) in my vulva, thinking it was post-menopausal thinning of skin. I happened to mention it to a dermatologist in Nov 2010 and she did 3 biopsies (ouch) which showed Crohns in 2 places in my vulva and one in the perianal area.  I then saw a specialist dermatologist in womens issues in the same clinic and she prescribed a strong steroid cream which has calmed things down.  She said to tell my GI doctors that the vulvar Crohns should be considered the end point of treatment - in other words if Im still flaring down there, the drugs arent working.  I just started Imuran last week and will start humira soon, as it looks like this type of Crohns is rare and hard to treat. 
dont know what the future holds.

Another surprise is that I was scheduled for breast reduction surgery on Feb. 9 and luckily had an appt. scheduled the week before with the IBD specialist there as well.  He told me definitely not to have surgery there (on my breasts) if my Crohns wasnt being treated because the Crohns could attack the incision on my breasts.  My regular GI was suggesting having the surgery first before starting Humira due to the risk of infection from a lowered immune system.  IBD specialist said just the opposite, so now waiting to get the Crohns under control with drugs and then hopefully can have the surgery.  I did some research and found that Crohns can be found in the "sub-mammary folds" which means under the breasts.  I suspect I may already have Crohns there as I often have pimples/boils there on and off over the years.

 Reply posted for PATRICIA.

I also have Vulva Crohns along with Anal Crohns and these have been the worst couple of years of my life.  I have a 18yr old and a 2yr old...I dont know how I made it this far but for the love of my kids.  I need to talk to someone cause its days were I feel like my world is crashing in on me.  The fissures and the daily pain becomes so much at times I wish I could call it quites and give up.  My navel is bleeding, my vulva area is bleeding on a daily basis and now my doc has told me that he doesnt know what else to do for me.  I have an appoint on Feb 15 and I am praying they can help me with some meds or surgery to close up the fissures.  Has any had fissures in both places and will it ever get any better?   Please if any one knows how I feel please please contact me....I just need to hear from someone anyone who is going through what I am.  Thank you so much for helping me

 Reply posted for PATRICIA.

Well, in the past I've always have had the fissures in that area and they would clear up and go away. In 2009, I got what I thought was an abcess on my vulva and it would not go away. After months of treating it as infection and having different testing done. Finally, it was diagnosed as Vulva Crohn's Disease and not abcess.

 Reply posted for PATRICIA.

When I was first diagnosed in 1981, I had apthous ulcers on every nook and cranny inside and out "down there". It was very swollen and PAINFUL. I was told I had herpes by the consulting GYN doc. Luckily for me, the ulcers cleared up as my Crohn's came under control with that flare and have not recurred with other flares. Good luck.

 Reply posted for PATRICIA.

 OMG I would love to hear what the symptoms are, I haven't heard of this but have had issues in that area and the only answer I get is....It must be scar tissue! hope to hear more

 Reply posted for PATRICIA.

Patricia,
Can you tell me the symptoms of this?  I think I may have the same thing.
Kaye