Crohns attacking my lady parts

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Crohnzie Girl

Crohnzie Girl

Joined
Jun 18, 2013
Messages
121
Hi All,
Ok first I'd like to say thank you for this forum we have because if it weren't for this no way would I be able to tell you my story.

Started in Spring of 2014 after I had my colostomy and felt much much better. I had gotten my menstrual cycle when I noticed open sores around the vulva. I was shocked! Not a clue what it was I ran to my OBG-YN. Well I'm not sure if they believed me or not that i had not slept with anyone, but they ran all sorts of ST tests. All came back negative. Drs were stumped. He recommended I go to my GI dr. So I did and he sent me to a wound specialist. That was a waste of time. With all the creams and ointments they gave me nothing healed gave me a UTI and it got way worse. I was in tears because it's now December and I feel like I've gotten nowhere. I went back to my OBG-YN and he referred me to a cancer specialist even after they've taken now samples of my already extremely sore and irritated vulva that the biopsy was negative but he's the best to help me. Finally I get to this specialist he takes one quick glance at me and said, oh yes. This is Crohn's alright. Bad case too. But we'll get you cleared up in no time with some flagyl." I was ecstatic/mortified all at the same time. How could this be I asked. I've gone to my GI who is my Crohn's Dr and he sent me to a wound specialist!?! He reassured me that in my case it's very uncommon but it can be treated. So after 3 mths of taking flagyl my lady parts looked normal again and I felt like a woman. Lol. I've never heard of this but I'm sharing to let you know Crohn's is a very vicious disease. Because we diverted the area my disease was attacking it went elsewhere which was below my sigmoid colon. Knowledge is power and if I can just help one person by reading this story that's one less a person has to suffer less. Thank you for allowing me to share. 😊
 
Hi!

Thanks for sharing! Metastatic Crohn's is really rare...but I do think your GI should have considered the possibility!!! So sorry to hear that you're suffering with it.

I believe Irishgal is another forum member who has the metastatic presentation - see a post from her here.

Glad the flagyl has got you feeling normal again :)
 
Hi Crohnzie Girl - so glad you got someone who figured it out! The pics in literature are NOT pretty, and yes, it's incredibly rare. We should play the lottery together! I have a metastatic/cutaneous presentation also and it took about a year for them to figure it out. My GI missed it completely, even though my symptoms were classic metastatic Crohns. I started reading journals, and went to a dermatology immunologist who (like your doc) took one look and said Yep, it's Crohns! I guess the classic tell is "knife like ulcerations." As you know, it's SUPER fun...ooops, I mean EXTREMELY painful.

If you don't mind me asking, how did you achieve remission? Were you in remission with your GI portion of Crohn's when this popped up? Did the flagyl alone put you back into remission? My treatment pathway (and failure) looks a lot like yours. Everything would work for a little while, but then the Crohn's would break through. The meds never fully took care of symptoms, but helped to the point where I could function. My disease got slightly better after a resection, but then came back with a vengeance, which is when the metastatic stuff showed up. Sounds like you may have had the same thing happen. I'll PM you too, but glad you are feeling well, and nice to know it isn't just me! But also sorry to know it isn't just me. Wouldn't wish this on my anyone!
 
Thank you! It's finally under control but it took almost a year to figure out what it was and only 3 mths to heal. And yes that's exactly what it was, knife like ulcerations. Whoa they were painful. But I had no idea I was another type of Crohn's. Thank you ladies for reading my story and your feedback. Very informative. 😊
 
Hi crohnzie girl. Im mandy and new here. Wow !! I have had crohns for approx 5 years and never heard of this !!! Thank you for sharing your problem, if i have to suffer this at any point, now at least il know what it is and what help to get. .My heart goes out to you and any one else with it, as if crohn 's aint bad enough eh ? Glad your on the road to getting back to normal. Mind you, whats normal with crohn's. BEST WISHES
 
This just happened to me! My PCP was sure I had herpes and my husband and I knew that was not it. My new GI Dr told me vaginal sores like that can be common for Crohn's. I had never heard of it before. The prednisone healed me right up though. Be wary for the same thing with skin wounds that won't heal.
 
Hi Caitlin84! Oh noooo. See the nurse practitioner made me get tested for that as well and asked me a bunch of questions like I sleep around or something. I felt so uncomfortable. Luckily the Dr came in and said this is not herpes. I've seen enough cases to know what they look like. I gave her that "I told you so" look. But really, It's not like my backside has caused enough problems my body wanted to add to my front side too. Oye Vey! Lol. The embarrassment. But I'm glad prednisone worked for you. I get a moon face quick fast so when he prescribed flagyl I'm like ok I'll tolerate how gross it iis rather than a big face which I've been through. The side effects can be just as depressing as the disease itself, sometimes. You know.
 
Hi everyone... What a nightmare,we have to cope with all sorts of *****, not just the obvious lol. Its amazing what us crohnies have to deal with. Yet we mainly do it with a smile n a sense of humour, because lord knows if maybe we didn't we would sink beyond hope. My own motto is " while i draw breath, i live, n aslong as i live il have.
fun "...
 
Hi mandyk. Lovely words to go by. 😊 Thank you. Yes we all have our own struggles. Best to smile thru them one day at a time. Even on our worse days.
 
Hi crohnzie girl. Aw thanks, ye we have allsorts to deal with, but i try to think this darned crohns wont take over my life n il try my best to tame it n keep it on a leash lol. At the moment it's behaving very well, after 2 op's. (sush dont let it know). But it has been a right s.o.b for 2yrs prior. While its good make the most of it i guess, because when it's bad it blinking horrid !! Best wishes to you .
 
Crohnzie Girl--You have such a good attitude, I love it, its contagious! I'm glad they cleared it up right away for you. They left me and my husband wracking out brains for like a week while we waited for test results. The prednisone worked for my lady parts, unfortunately its not working as well for my intestines this time around. Its also definitely one of those parts of the 'cure' that can be as bad as the disease. Today they decided to start tapering me off and I'm going to start Humira or Remicade. I'm excited, because I am so ready to start feeling better.
 

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