New member

Hello all, I have joined this forum to perhaps discover if there are any people who suffer from crohns in the same way I do. I am 27 years old and have had symptoms for 6 years. My symptoms at the beginning seemed to point to crohns or ulcerative colitis. Cramps, toilet urgency, blood when going to the loo and weight loss. After test upon test I was told inconclusive. I wasn't really taking much in terms of meds at this point. I could cope and whatever I had seemed managable with diet etc. But 4 years ago I began to get ulcers/lesions on my gums. The other symptoms had almost gone completely. My lesions got worse and worse and then for good measure even worse still. I was taking high doses of steroid which made me bloated and my symptoms worse when I stopped taking them. At my worst, there was not a single part of my mouth inside that wasn't covered in lesions, they were all over my lips, gums and inner cheeks. They were very painful and I couldn't eat. Each morning my lips and eyes were stuck together and had to force them apart tearing my lips even more. My nose bled and had lesions up there and also in my eyes. The whole time my tummy felt fine and toilet visits were normal. I have had biopsies of intestines, mouth, nose, head scans, colonoscopy dozens of times. The doctors have diagnosed more likely crohns but still inconclusive. I am on immunosuppressants and infliximab which is administered via drip. I have tried humira and was non responsive to it. Infliximab has kept the lesions at bay. I suppose I am hoping someone else has suffered the same as me as when I research crohns I don't feel as though I have any other symptoms. I am tired, down and worried I am being treated with a drug that would cover other illnesses. I have asked the docs these questions and I get answers but not to the questions I actually asked, they seem afraid to commit to anything. One specialist removed me from his care as he said I didn't have Crohns or ulcerative colitis, he was a leading crohns doc.

Hi Inkymouse,

Welcome to the forum. I am sorry to hear about some of the symptoms you have suffered from but am glad that Infliximab has kept the lesions at bay.

While I have not suffered from lesions myself, IBD can affect the entire digestive tract which includes the mouth. Oral sores/ulcers are a symptom I have heard others having.

I am sure you will find others with symptoms like yourself here and I hope you enjoy yourself in our community .

Hi Inky
and welcome
are you in the UK?

sorry you're having a bad time with mouth problems, and they are quite common with Crohn's, I have them too on occasion. Crohn's can affect us from the mouth to the anus!
Have you seen a dental hygienist? Your hygienist could prescribe Metronidazole (Flagyl) and check for gingivitis.
Glad Infliximab is working for you, stick around, lots of support here.
lotsa luv
Joan xxx

Hi Inkymouse and :welcome:

Sorry to hear about all the indecision surrounding your diagnosis, you must be so frustrated! and unfortunately it's not that uncommon around here. Here is a link to an old thread regarding mouth, nose and facial ulcers.................

http://www.crohnsforum.com/showthread.php?t=4868

It's good to hear the Infliximab is working but I do hope you find solid answers as to what is going on and why. Good luck and welcome aboard!

Take care,
Dusty

Wow, thanks for the warm welcome. In reponse to Astra, yeah I am in the UK. thanks for the advice on the dental side, I have actually been seeing a professor in dental medicine. He was the one that moved things forward for me, untill then I was existing on steroids. They have ruled out gingivitus and a whole host of other things. Thanks for the link dustykat

Welcome!:bigwave:

OMG, you sound just like me when I started, when I was 14 years old (now 38). My lesions were in my mouth, up my nose, down my throat, and came out on my eyelids,too-horrible!

I've been misdiagnosed with everything from anorexia to depression to TMJ. I even had a renowned GI refer me to a psyciatrist!

Don't fret over not having a "difinitive diagnosis".The problem with Crohn's is it doesn't always show itself in the way the doctors are looking for. I've actually had several GI's admit alot of people don't show physical signs during a test until later on in the disease process.

I received treatment for Crohn's but wasn't difinitively diagnosed until I developed iritis, fistulas and Crohn's arthritis, but my colon only showed mild inflammation during colonoscopy. Not until I had an abdominal hysterectomy did the surgeon see the Crohn's lesions on the outside of the bowel (I didn't know it could do that) along with rigidity that comes from extensive inflammation over a period of time.

Since then 20+ years after symptoms began, I show scarring/damage to small intestine, fistulas, and lots of other extraintestinal signs of Crohn's. I am grateful I found doctors who were willing to listen to me, rather than just rely on tests.

Hi Inky! Hate to hear a story like that, but thrilled you found the forum. Feel better, okay?

My goodness, you really do sound like me (mountaingem)! It is a relief to find people who have gone through the same or similar, or just people who want to talk. Although I wouldn't wish it on anyone! I always feel as though I'm bothering my friends and family when I talk about it. I am so pleased I decided to join, I have never done anything like this before and already feel better
Thanks x