Orofacial granulomatosis - Crohns disease
Posted , 49 users are following.
Hi I have just been diagnosed with orofacial granulomatosis OFG -v uncommon auto immune disease which is dietary related & have been placed on a cinnamon & benzoate free diet which I'm really struggling with. I am having further allergy tests soon & a colonoscopy to see whether I have underlying crohns disease. I was wondering if anybody has this condition that does have or not have crohns? Basically my whole face is swollen, lips & cheeks especially but the diet is definately helping although it just feels my face doesn't belong to me & I have pins & needle feeling all the time in my face :-( Be great to talk to someone who knows how I'm feeling! Thanks Emma :-)
3 likes, 112 replies
ellie21 Emmsj
Posted
silvano02985 Emmsj
Posted
Hi I have oral facial granulomatotis I I had similar symptoms lip swelling lower lip pins and needles in the face and pain I don't have crowns desease and did the tests but did have a ulcer I do have rhomotoid arthritis all over my body it took a year to be diagnosed finally had a immune specialist treat me with steroids and imuran immunosuppressant ,took a bit of time for the body to adjust to the drugs but making slow progress feel tired on the drugs and must not strain the body from work which makes a huge difference allowing immune system to fight started with 100mg on imuran it was to strong strong worked it down to 50 mg and seems to work ,25 mg on steroids steroids and reduced to 5 lip is still up and down But bettor but long way to go and arthritis is up and down with work yet doctor told me it will take time hope this helps sil
james18532 Emmsj
Posted
Hi everyone,
I was diagnosed with OFG 3 months ago. It all started back in August 2016 when I was 24 years old and I used a powerful weed killer in a garden which unfortunately got on one side of my face in the wind. Within a month the right side of my face (mainly the cheek area) was swollen and red.
After nearly 18 months of the hospital trying to figure out what was wrong with me I had biopsies taken from inside my mouth which confirmed I had granulomas in my tissue. When it first happened the swelling and redness was pretty bad for over a year, over time it has got significantly better.
The only symptoms I have got now is swelling to the right side of my cheek around my jawline. The swelling to my cheek with the redness are the only symptoms I have ever had. I have never had swollen lips, cracked lips, ulcers inside my mouth etc and after reading some of the posts on here I am really confused and was wondering if anyone else just has a swollen cheek?
I have had patch testing which come back negative on everything, I have not got Crohns Disease, I do not have flare ups and although I follow the OFG diet religiously I do not react to any foods that I previously ate but I still do it anyway as I am trying everything possible to make the swelling better.
The swelling is at its worst in the morning and gradually goes down throughout the day (although it never completely goes away). I have noticed that when my head is looking down when reading or on the computer the swelling seems to build up. It is also probably worthy to note that when I had the accident the first thing I noticed was a small pea sized lump that is located literally where the swelling starts (on one side of the little lump there is no swelling and then immediately on the other side the swelling starts). Also if I do exercise the swelling seems fuller.
Has anyone else only got the symptoms I have? I haven't been out socially for over a year as I'm too anxious of people looking at me so I have literally researched every night to try and get to the bottom of this and everything I come across is nothing like what Ive got wrong with me. I'm starting to think whether I have been misdiagnosed. Its like the little peasize lump is some sort of blockage that is building up fluid or something.
If anyone has the same symptons as me or has any advice or information it would be appreciated so much.
Thanks everyone
joanne94 Emmsj
Posted
Your condition with with the lump you have doesn’t sound like typical ofg symptoms to me.
My17 year old son has ofg, for the past 3-4 years and it mainly affects his glands, always his lips, and inside his mouth with ulcers, and cobblestoning on the inside of his cheeks. He has scarring from lesions inside his mouth.
He woke up one morning with very swollen lips so I thought he had experienced a allergic reaction to something he had eaten . He was given antibiotics, steroids, doctor thought it might have been oral herpes. Luckily it was the dentist who recognised Jason’s symptoms , I also did a lot of investigation to see what it could be.
Have you been to see a dermatologist ? I thought that ofg always affected the lips and as yours aren’t affected I doubt yours is ofg. But of course I am not a professional so if I was you I would be nagging doctors and professionals for more investigations. Have you had a biopsy taken to test for ofg ?
Jo
james18532 joanne94
Posted
Hi Joanne,
Thanks for replying!
Yes I've had the biopsy and it come back positive for granulomas in my tissue. From the research I've done apparently anything to do with granulomas found in the facial region is diagnosed as OFG and the condition can present itself differently from patient to patient. Also where mine was brought on from an accident it is slightly different from typical OFG.
I see the OFG clinic at Guy's on Wednesday and they have prescribed me with a Protopic ointment (tacrolimus) as a first line of treatment. If that doesn't work then its the injections and if that doesn't work there are other drugs to try apparently but they can cause side effects that are undesirable.
If you or anyone else reading this is finding it difficult following the benzoate and cinnamon diet I've found this really handy app that does it all for you. You can search products from all the supermarkets and you can even scan the barcodes and it tells you instantly whether it contains the ingredients not allowed. Its surprising how many things your actually allowed to have once you browse the app. For example I have read a lot of posts of people wishing their child or themselves could eat ice cream and I found out from the app that sainbury's Cornish vanilla ice cream is allowed. Waitrose do chicken nuggets that are allowed, so anyone that has a child that has this terrible condition download the app and you may just find a lot of the things that could make life as normal as possible for them (I'm sure kids don't want to eat steamed fish and vegetables every day!!).
The app is called FoodMaestro. I've got an iPhone so downloaded it from the App Store (its free). If you can't find it heres the link to the website
I wish you and your son all the best Joanne!
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joanne94 james18532
Posted
Thankyou for your reply it sounds like you are trying everything possible treatment wise, so wishing you all the best and really hope you find something soon that works for you.
Thanks also for the mention of the App regarding bezoates , I will download it straight away and hopefully it will be very helpful when shopping for foods for my son.
I joined an ofg group on Facebook a few years back, it is always useful to follow others and see how they cope with OFG themselves, people often seek and offer advice so it is worthwhile if you ever fancy joining the group.
Best wishes Jo
siobhanM james18532
Posted
As recommended already you should join the Oral Crons Disease Facebook Group. You will normally find someone with similar symptoms who can help with answers. I am sure I have read about the App on the group and some people said it was unreliable so just be careful. My son was offered Anzapiothrene an immuno suppressant but we declined and he had steroid injections which worked but swelling came back so back on the diet. Hopefully will be given more injections when we go back in a month.
Good luck