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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 :)
 
Your normal. That certainly rings a bell for Crohn's. So many of us go undiagnosed for YEARS because we get used to the misery. My doc asked me why I hadn't gotten help earlier. Well, it's two part: healthcare sucked (military) but also because me and my guys always had diarrhea. Most folks had 3-4 large energy drinks per day combined with little sleep and high stress environment. Who'd know?
 
Hi there, there is a whole thread on Remicade on this forum and people's experience with it that you might want to check out. My son is on remicade and it's been amazing for him. For most people, biologics have less side effects than steroids do, and most do really well on them.

Most people are afraid of biologics until they learn more about them and actually see how much they help.

Good luck.
 
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 Brie,
Wow that is interesting with your Vulva never knew.
Well I’m 43 now first got diagnosed when I was 24. So medication did some good but like you I didn’t like certain meds, steroids, and animas but I took them for years... so now since about a year I changed my diet and found a company online that I was introduced to by my girlfriend, their Vitamins and probiotics are just the best!
I don’t have any flare ups and It’s wonderful. So what I changed on my diet is I became an Vegetarian no meat at all but I still eat fish and even eggs. Sweets are no problem either I love chocolates etc. But the Vitamins are Key, the Probiotics are awesome, so they really get to the GI tract where they supposed to. So I can only recommend to get on multivitamins but only plant based I must add. Not the store bought ones. Mine are manufactured in the US and are shipped from US. I am totally off any kind of meds, except Tylenol once in a while because of headaches, but that is it.
Be well!
 
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