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My Journey - New to Forum

I was diagnosed with Crohn's disease in October 2016. The way I came to be diagnosed is a bit odd and happened by accident. I was going to the dermatologist for minor skin problems on my face and scalp. Last minute, I asked the nurse if she could also check my vulva. Strange, I know. I had been experiencing weird, skin ulcers down by my vulva - near my vagina/butthole (sorry). I had gone to several gynecologists, got tested for all kinds of STDs, had surgery, and no one really knew what it is. So I figured I'd ask the dermatologist. Skin issues, right? Made sense.

The dermatologists were unsure - did some biopsies and took wonderful photos. Nothing came back conclusive. One of the doctors looked at my photos and said, "This looks like Crohn's." When the nurse told me, I was shocked and immediately brushed it off. She asked me if I had stomach pains and other symptoms- to which I completely downplayed because that WAS my normal. I had grown so accustomed to the way my digestive system functioned (pain, frequency of bowel movements, types of bowel movements) that I did not think anything of it. I completely adapted. So, they recommended me to a GI.

Fast forward a couple weeks, I find myself at the GI. I told the GI doctor how I came to be referred regarding my ladybits - to which the doctor seemed disgusted and wanted nothing to do with my vulva (like I did either?) - and scheduled a colonoscopy. Got the colonoscopy, and as soon as I opened my eyes after the procedure, the doctor immediately said, "You have Crohn's." Perhaps it was the shock, the waking up from sedation, but I immediately started to cry. I had been experiencing weird sicknesses the past year or so prior to this diagnosis - slightly relieved to have some sort of answer, but still was angry that I had this new, forever disease that I was never going to get rid of.

I was able to get by on Pentasa - 2 capsules four times a day. I really, really wanted to stave off going on biologics. They scare me and I have been afraid of the side effects. The Pentasa did help, but in all honesty, I knew it wasn't going to be a long-term solution. Flash forward to today, I recently got a colonoscopy and MRI enterography as well as MRI of my pelvic area. They found a perianal fistula! Which, lo and behold, I think is contributing to my vulva problems I have been having for years. Let me put it this way - if girls could have a taint, this is where my ulcers would be. They don't bother me much, as I am comfortable, can move, does not interfere with my sex life. However, they do flare up where they become very irritated, itchy, and bleed. I also get weird skin tags on my legs and there is one on my inner thigh. I also just learned that there is a thing called "vaginal or genital Crohn's". WHO KNEW!?

After this recent diagnosis, my doctor is putting me on a steroid and antibiotics. They want me to go on Remicade; something I am so afraid of. This is where I am at with my journey. I'm scared of being on an immunosupressant - makes me feel vulnerable, weak, it's permanent (if I stay on it and all goes well), fear of weight gain and other possible bodily changes. If anyone can post their experiences - good and bad - on this medication and what it has done to/for you, I would be grateful to hear your stories. I've started to do a lot of research, but I still want to hear from you. I know this is really, really shallow of me but I am getting married this year and am struggling with my weight as it is. I have gained probably 20 pounds since I've been on Pentasa and I am a really tiny woman - about 4'10". I do NOT want to gain more weight.

Thank you for taking the time to read this, if you did. I wish you all the best of luck on your own personal journeys. I am happy there are forums like this for support.

Best,
Brie
 
Hi! I've not been diagnosed yet, but I and the first doc I saw strongly suspect I have Crohn's. I don't know anything about this stuff yet so i just wanted to follow your post to see what help people provide!
Best of luck and I hope any new medications you try work out for you!
 
Hi! I've not been diagnosed yet, but I and the first doc I saw strongly suspect I have Crohn's. I don't know anything about this stuff yet so i just wanted to follow your post to see what help people provide!
Best of luck and I hope any new medications you try work out for you!
Thank you so much, Lizzy! Always a journey, right? Not the smoothest, unfortunately, but I wish you the best of luck in yours as well! I hope you get answers real soon. I will keep posting my experiences :)
 
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