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Crohn's Disease Forum » Extra Intestinal Manifestations » Mouth » Crohn's Disease of the lips


 
10-12-2012, 07:40 AM   #31
Kip1
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Hi my lips swelled at the same time I got ulcers in my mouth. I had this happen twice & it lasted for over a month each time. I looked like I had Jagger lips as my daughter said.
I I was diagnosed with crohns at that time & my docs seemed clueless as to what was causing it.
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10-19-2012, 04:32 AM   #32
Jam300
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Location: Brighton, United Kingdom

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It's called Activated B Complex and you can find it here:
Has anyone else had any positive experience with this, I would be very interested in giving it a pop. I'm not very well versed in the subtle differences in supplements and the like would any advanced B complex do/be the same thing? The other one isn't available on Amazon's UK website.

As far as I am aware, my two swollen lips are the only symptom of Crohns i've ever exhibited. Though they have been swollen consistently for the last ten or so years of my life. They are not cracked, chapped, painful, sore ect, they're just big. Any thoughts?
10-24-2012, 06:36 PM   #33
j.bug
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I have had problems with swelling of my lips. I also get crohns lesions in my mouth, throat and esophagus. I have had lesions removed from my tongue twice.

The doc gives me carafate, which I think just helps to coat them so they aren't as raw. I also have a prescription for topical lidocaine gel. I use that when the sores on my lips and in my mouth are really bad. I apply a small amount on my lips, and swish it around in my mouth, then spit. They really discourage me from swallowing it, but I have swallowed a small amount on occasion when the pain in my throat and esophagus is really, really bad. I am just really careful about it, because I know it can numb enough to interfere with swallowing. I definitely don't eat anything for a while after I use it.
Breesie, I have been searching for someone else with crohns in their esophagus! I hope you still come on here, id love to talk to you! I have been prescribed carafate, disnt do anything, and I have been prescribed lidocaine. My docs actually have me swallow the lidocaine before eating, as I can't eat or drink otherwise. My ulcers start in the back of my throat, and go all the way down into my stomach. How have your docs treated you? Have you reached remission???! Agh! I hope you'll read this!
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10-25-2012, 12:47 AM   #34
Paige
 
Join Date: Jul 2012
Location: Bristol, United Kingdom
Jam300 ... Check out this link... U may have orofacial crohns &/Or OFG (oral facial granulomatosis . Type both into google every ones symptoms vary.

http://dermnetnz.mobify.me/site-age-...ial-crohn.html
10-25-2012, 08:03 AM   #35
Jam300
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Hi Paige, yes I was diagnosed with Orofacial Granulomatosis and Crohns. However the Crohns was discovered by coincidence when they were looking into reasons why my lips were swollen as I personally hadn't noticed anything wrong with my gut.

Ten years on from my lips first swelling and I still (as far as I know) don't have any Crohns syptoms and my lips haven't gone down, which is why i'm now looking in to whether or not I actually do have Crohns at all.
10-27-2012, 12:03 PM   #36
Paige
 
Join Date: Jul 2012
Location: Bristol, United Kingdom
How were u diagnosed with crohns jam300? I was diagnosed with crohns in terminal ileum via colonoscopy & gut biopsies. My lip biopsy came back inconclusive but it's defo OFG .
I have always had IBS throughout my life & starting to think i may have had crohns all along. However my GI told me crohns in gut generally comes after OFG symptoms. I'm so confused!!!
I presume you have tried the cinnamon & benzoate free diet ? It helps me but my lips r permanently swollen . It's been 6 years now.
I'm currently trying to find the right meds.seem to be reacting to every drug at the moment! They seem to be doing more harm than good!
Are you on any meds?!
It's great to find someone who knows what I'm going through! Please keep in touch! We are truly rare people!!! 😃 Hope u having a gd wknd !
10-28-2012, 06:42 AM   #37
Jam300
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I was diagnosed via a colonoscopy and endoscopy, but I was pretty young so I don't remember the actual specifics of it, hoping to rectify this when I see the GI.

I haven't tried any diets or been put on any meds to date. I was on Modulen for two months when I was first diagnosed and then followed an elimination diet which didn't really seem to do anything. Its hard for me to see the effects of something seeing as I don't have any GI symtpoms.

I have had swollen lips since I was 12 and i'm now 21. Yes we are rare, but you are not alone
10-28-2012, 03:59 PM   #38
Paige
 
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Location: Bristol, United Kingdom
http://www.bsom.org.uk/PatientInform...ietcinbenz.pdf

Try the diet above jam300. It's a diet from hell but has definately helped my facial symptoms . If I eat some thing I shouldn't my lips explode even more!! I would definately ask your GI or oral specialist for patch testing against cinnamon & benzoates . It has been strongly linked to people with OFG & has made me feel so much better.

Great to know we r not alone In this. Let me know how u get on at your GI ! 😊
03-04-2017, 07:29 PM   #39
Lily's of the valley
 
Join Date: Mar 2017
Location: Ontario
Hi everyone,

This forum has really put my mind at ease. I was diagnosed with Crohns a year ago (age of 23) but I have had frequent swellings of the lips since I was 12. It really had a big effect on my confidence levels and I dread the next swelling. My doctor said it may have nothing to do with my Crohns which really confused me. It seems that you all have been affected by this same problem I have been going through.. I've luckily found a link between eating gluten/dairy/eggs/yeast and my swellings so they've become less frequent. Does anyone have any tips on anything else I could do to reduce the likelihood of it coming back?

Thanks a lot everyone and I really wish you alll the best!!
Don't know how to or where I should be writing my messages, but really wanted to share how I deal with mouth and lip sores. I am so grateful for my Alo Vera plants growing plantation. As soon as I feel that tingling pain of a sore coming on I break off a tip of the leaf and rub it on and around the area. If it hasn't become a sore yet it just reverses it to nothing. If it's a sore already it goes away much faster. I just love my Alo Vera plant. Hope this helps. I am proof of it's miracle gel. Best of luck. Lily's of the valley
03-04-2017, 07:32 PM   #40
Lily's of the valley
 
Join Date: Mar 2017
Location: Ontario
M8ya said:
Hi everyone,

This forum has really put my mind at ease. I was diagnosed with Crohns a year ago (age of 23) but I have had frequent swellings of the lips since I was 12. It really had a big effect on my confidence levels and I dread the next swelling. My doctor said it may have nothing to do with my Crohns which really confused me. It seems that you all have been affected by this same problem I have been going through.. I've luckily found a link between eating gluten/dairy/eggs/yeast and my swellings so they've become less frequent. Does anyone have any tips on anything else I could do to reduce the likelihood of it coming back?

Thanks a lot everyone and I really wish you alll the best!!
Don't know how to or where I should be writing my messages, but really wanted to share how I deal with mouth and lip sores. I am so grateful for my Alo Vera plants growing plantation. As soon as I feel that tingling pain of a sore coming on I break off a tip of the leaf and rub it on and around the area. If it hasn't become a sore yet it just reverses it to nothing. If it's a sore already it goes away much faster. I just love my Alo Vera plant. Hope this helps. I am proof of it's miracle gel. Best of luck. Lily's of the valley
04-04-2017, 12:19 AM   #41
IrritableBob
Breesie, I have been searching for someone else with crohns in their esophagus! I hope you still come on here, id love to talk to you! I have been prescribed carafate, disnt do anything, and I have been prescribed lidocaine. My docs actually have me swallow the lidocaine before eating, as I can't eat or drink otherwise. My ulcers start in the back of my throat, and go all the way down into my stomach. How have your docs treated you? Have you reached remission???! Agh! I hope you'll read this!
I have Crohn's of my esophagus as well!!! I have had swelling of the lips and eyes as wells as mouth ulcers. When I was diagnosed, the GI counted 20 ulcers in my esophagus. I have Crohn's all the way through my GI tract, bit the doctors basically stare blankly at them when I have the facial swelling. Aloe juice really helps my throat, but the only thing I've found that helps the face stuff is steroids--either OTC cortisone cream, or one time I had to get an injection and go on prednisone for a week. Myrrh essential oil seems to calm the itching..

There should really be a group on here for Esophageal Crohn's, because it seems to be a less common thing.
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