Has anyone heard of this ?: Hi all am... - Crohn's and Colit...

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Has anyone heard of this ?

Mk0466catbuddy profile image
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Hi all am new to the forum but was diagnosed with crohns colitis in 2006 ,my status is currently as in remission thou I suffer a lot from lots of mouth ulcers ..Also I am having lots of problems with my lady bits they now think I have a rare condition caused by my crohns I’ve been referred to a dermatologist for confirmation,I’ve been put on very strong steroid cream on the mean time as been in a right mess 🙈

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Mk0466catbuddy
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Legomum profile image
Legomum

Sorry to hear about the new symptoms. I’m sure it’s hard to even write down the details when it’s in these new areas, and I hope the dermatologist can help you. May be worth looking up another rare disease that presents in a similar way to Crohn’s- Behçet’s disease. It’s a vasculitis which presents with oral and genital ulcers but can also impact the bowel so some patients are initially thought to have Crohn’s. I am new to this forum too as we try and understand the bowel condition. Good luck!

Mk0466catbuddy profile image
Mk0466catbuddy in reply to Legomum

I have crohns colitis I’ve had it since 2oo6 these are new symptoms well when I say new for nearly 2 years but with COVID I’ve been fobbed off till now so I’ve seen to gynaecologists n waiting to see dermatologist for confirmation , yes little ulcers appear the last flare up was for over 3 weeks very painful and uncomfortable .. all I wanted to know was has anyone else ever had this ? I also get lots of mouth ulcers too ..

dbar126 profile image
dbar126 in reply to Mk0466catbuddy

Hi, I get alot of them in my mouth and throat (and somwtimes in my private areas). My gastroenteroloist told me that it all goes along with chrons :( He orders me either magic mouthwash (works great but expensive ($83 a bottle) or nystatin oral suspension (much cheaper and works pretty well too). A pill (diflucan) for my private areas. They help but it seems as though its always a consant cycle of this! I hope you feel better😊

Barnclown profile image
Barnclown

Sounds like this gyn condition could possibly/maybe be lichen sclerosus? I’ve been managing LS for over 15 years & my gyn’s topical steroid helps a lot, alongside bidet baths in antimicrobial emollient solution + vag moisturisers eg replens & also various self help/lifestyle techniques

I know several other colitis patients who have LS

If you are diagnosed with LS, there tend to be some of us who get this alongside our other autoimmune conditions. Here’s a link to good info on LS from one of the other support group organisations with a community here on Healthunlocked:

sruk.co.uk/conditions/liche...

Mk0466catbuddy profile image
Mk0466catbuddy in reply to Barnclown

Thank you this has been mentioned they are going to do biopsies next to confirm xx

Barnclown profile image
Barnclown in reply to Mk0466catbuddy

That’s good! You’re very welcome! Take care & good luck ❤️🍀

💐 I had these symptoms at the very beginning of the pandemic, literally saw the nurse at the GP just a week before lockdown 1 hit 🙁 Finally got to see a Gynae Consultant in Autumn 21 who was flummoxed 😶 Finally passed my case over to the Gynae consultant who had looked after me previously, had biopsies under GA & yes it was my Crohn’s flaring & manifesting itself in this way. Further scans revealed severe active inflammation in large bowel. Now waiting to hear the plan moving forward. But I know how embarrassing it is, I was mortified to start, but now just want a plan of action. The one thing that has helped massively is Lidocaine 5% cream - it brings relief and enough comfort to enable you to get on with the day. I hope the biopsies provide some answers & you’re in my thoughts 💐

Mk0466catbuddy profile image
Mk0466catbuddy in reply to MrsEndeavourMorse

Thank you for sharing appreciate it

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