# Crohn's Disease of the lips



## MyButt

Does anyone else have swollen lips due to Crohn's?  My doctor said that's what is causing my swollen lip and it's just terrible.  I have a hard time going out in public because of it.  It's so miserable.  If anyone else has it, has anything you've done reduced the swelling?


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## David

Hi there,

Does your doctor have you on any medications currently?  Have you discussed your concerns regarding your lips with him or her?


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## denisk

My lips swell like crazy please let me know what your doctor says and if possible i'd like to contact him somehow?  It's awful I really hate it when they swell...


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## Iya

MyButt said:


> Does anyone else have swollen lips due to Crohn's?  My doctor said that's what is causing my swollen lip and it's just terrible.  I have a hard time going out in public because of it.  It's so miserable.  If anyone else has it, has anything you've done reduced the swelling?



My lips and face were swollen for about a year. So swollen that I didn't want to be seen in public, people thought I got lip injections lol. 
 I also had horrible mouth ulcers. My GI Dr reffered me to an oral dermatologist who gave me a steroid cream for the ulcers inside my mouth (which didn't work). When nothing else worked, he put me on Thalidomide (SCARY). It usually works for patients within a few weeks, but it took a year for the swelling and ulcers to clear up. Once it did, I came off of the drug, and have had some swelling pop up randomly. I have found that Prednisone helps with the lip swelling almost immediately now, prior to Thalidomide nothing helped. 

Good Luck!


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## ameslouise

Are you lips chapped in addition to swelling??? I have had chapped lips for two months and just now am getting them under control. I have wondered if this was CD related but just chalked it up to winter weather and dry heat in my house.  

- Amy


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## hawkeye

Amy:

I have had the chapped lips as well and always thought it was due to the winter climate, but I am not so sure, could be as I find my skin especially hands dry as well.

Mark


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## breesie

*swollen lips*

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.


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## BigRed

When I have a flare up brewing, I get sores on my lips. The docs keep saying they're cold sores, but they're simply not the same thing.  I can tell how bad the flare is going to be based on the sores.  I do take lysine supplements and it helps to keep them at bay, whatever they are.


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## M8ya

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!!


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## denisk

I had that swelling problem last year big time but so far this year everything has stayed normal.  I really still learn about Chrons everyday thanks again to this board.


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## Nico85

this may sound daft but try taking 2 anti-hystamines....


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## Jessica

I have always had severe chapped lips.  I always blamed it on my smoking though.


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## lookitsjen

My lips don't swell, but if i eat french fries or potato chips my mouth breaks out in sores and my lips hurt really bad, but no swelling. This only started happening when my other crohn's symptoms started and my doctor said that it's the crohn's. Don't know what to do to make it go away. Do you have it all the time or does it come and go? I only ask because I was able to pinpoint that french fries and chips cause my mouth to hurt so i avoid them. Didn't know if you notice it after eating certain things or all the time. Hope you feel better


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## ameslouise

I have related my swollen/chapped/dry lip issue to a vitamin B deficiency.  I take a vitamin B12 shot every month.  At my hematologist appt in April, my B levels were low (and my lips were BAD!) and my doc told me to take a shot every week for four weeks, then go back to once a month. After two weekly shots, my lips cleared up.  For the next couple months, a few days before my shot, my lips would start to act up, then clear up a few days after the shot.

Now I take a B complex supplement that is allegedly absorbed throughout the small intestine and not just the terminal ileum.  It seems to help because for a few months, my lips were fine (they are acting up now after a short hospital stint with no food and no B supplement).

It's called Activated B Complex and you can find it here:

http://www.amazon.com/Isotonix-Adva...ASD4/ref=sr_1_1?ie=UTF8&qid=1314763484&sr=8-1

Hope this is helpful.  Crohnies are often deficient in B vitamins so it's a good thing to stay on top of, whether you find it's related to your lips or not!!

- Amy


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## Stephy Chelle

I get sores on my upper lip a lot. My upper lip swelled up once and went down 2 days later. Luckly it happened during a 3 day weekend when I was at home and not working. It didn't even occur to me it could be in connection. Weird! I once had a sore that lasted months, a friend told me to use carmex when nothing else was working, carmex actually cleared it up...although I have a scar now from it being there for so long. Needless to say I have like 4 jars of carmex....1 in the work truck, 1 in my truck, 1 in my purse and 1 at home. Lol


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## Paige

My top lip became swollen 5 years ago & my doc just told me to take histamines which never worked. I just put up with my lip being v painful & cracked.. It felt like I had a piece of rubber stuck to my face. In April this year that's when everything started to go wrong. I developed a swollen left cheek, then a swollen bottom lip, then the other cheek & then my whole face swelled. I was allergic to preds so My oral specialist put me on a cinnamon n benzoate free diet which did reduce the swelling. 
My specialist sent me for a colonoscopy to rule out crohns which came back positive last thurs :-( so I have gut & facial crohns & waiting to c a gastroenterologist .


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## b1kerj1m19

hi i have had a swollen lower lip and bleeding of the bowls for about 9 years now. at first when i went to the doctors they told me it was a n allergic reaction to something. so they put me on antihistamines(which did not work). this went on for a while until one day my lip flared up really bad and i wouldn't go to school cause i was that badly embarrassed. so after some tests they told me i had crohn's disease. and put me on imuran and humira. after being on this for 1 year nothing had changed. so i stopped the medication. i still have this awful swollen lip which never goes down fully just goes up and down in size and bleed a little from the bowls. so any advice on what i should do next as im really sick of it now and i feel really depressed about it and my confidence seems to be getting a lot worse than it was and im sometimes afraid to leave the house cause im afraid what people might say about me


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## AckMac

I used to get really bad lip swelling until my doctor told me to take a daily B complex vitamin.  I'm not sure which I was deficient in but within a week the swelling was down and I haven't had it since.


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## Aussie

The lip swelling is due to Orofacial Granulomatosis, commonly seen with Crohn's, then referred to as oral Crohns.

There are a number of treatment options.

1. Injection of triamcinolone (steroid) into the affected area, usually a quite severely deformed lip. Injection every few weeks - works really quickly, the swelling usually resolves completely after a few injections (3 injections would be a usual course).

2. Watch for cracking of the lips, common when very swollen, can lead to a secondary bacterial infection which will need a course of antibiotics.

3. Change your diet to exclude cinnamon and benzoate (which is seen in massive doses in Irn-Bru for the ppl from the UK).

Good luck.


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## pamshusband

If you see my story, I had swollen lips for 5-6 years and eventually had a biopsy which showed granulomas. If you have these, investigate whether you may have Melkersson Rosenthal syndrome --this is very rare and most doctors will have never heard of this. Good luck


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## David

pamshusband, do you have Melkersson Rosenthal syndrome?  Do you have facial paralysis?


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## Paige

Hi everyone... Hope u r all pain free at the moment! 
Update on my last post....My patch testing came back as allergic to all cinnamon & benzoates which basically means I have to avoid practically all foods containing cinnamon , foods with artificial colours, flavours & preservatives to help my orofacial crohns (orofacial granulomatosis ) :-(. 
My GI has started me on aza & budesonide to help my gut crohns & hopefully that will also help with my facial symptoms too.
I hate the horrible sensations & have in my face... Burning & tingling all the time & trout pout lips! Fingers crossed aza will help... Although only day 5 of starting aza & feel really nauseous . Hope it passes! Gastroscopy on friday to see what my tummy looks like & if crohns has had its wicked way with my duodenum! 
Take care everyone 
X x x


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## 401kman

the scary pary about reading all this stuff is it reminds me of all the previous things I had and have dealth with.  I had swollen lips for about 2 years.  Was referred to an oral guy who immediately said it was oral CD - i had never heard of that - he was a brilliant warm caring compassionate doc based locally here in Long Island NY where I live and he has since gone to one of the big fancy hospital in MD.  His name is James Sciubba.  He gave me shots throughout my mouth (some kind of sedative) to be able to withstand the pain of the shots he gave me immediately after.  I recall the name of the drug - it WORKED - it was called Kenalog - don't know if I am spelling it right or whether that was prescription name or brand name any longer - but it WORKED.  It hurt - I would get upwards of 16-20 shots each time 1/2 of the sedative and half were the drug.  A few days later, swallowing was easier - the swelling went down etc.  I went back about every 3 weeks if memory serves.  Eventually it disappeared.  CD - the gift that never stops giving.  Man I can share stories over a 35 year period of crap it has done to me.  I prefer to look forward not backwards.

FEEL WELL EVERYONE.


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## Paige

Hi 401 kman

Thanks for your post. My oral specialist mentioned to me about kenalog injections but my GI wanted me to start azathioprine & budesonide instead... Saying if they treat my guts my facial Symptoms will get better. Although on day 14 of the aza I had to stop as getting horrendous side effects. We're you on any drugs for your gut crohns disease? Thinking injections of kenalog is the way forward now! Thanks again!


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## 401kman

Never been off drugs of some kind for the CD for 35 years - always taking something or other.  My GI agreed with the oral guy to treat AT the site of the problem!


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## RCDC

What a load of S...t that is. MAYBE  a side effect seeing as they are all the rage to have these days. Boy......some doctors really are quacks eh?


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## RCDC

Well............after reading all those posts I see that I am way off base with my post. Sorry. As usual there are way too many side effects from too many things, both natural and induced. It`s a crazy disease that frustrate the hell out of many specialists let alone a GP


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## 401kman

I cant reply to your private email as it indicates your space is all used up


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## gcmunro

This website has been a godsend.  I only joined last night but already I feel I know what my son may have and I will take all the information I have gathered and hopefully my doctor will listen to me.  My son at present has a massive swollen lower lip and he get this every so offen and he also complains of a sore tummy.  He was under Great Ormond Street for a number of years having two lots of scopes both ends and test came back clear, however this was about six years ago and he didn't have the swollen lips it was just the mouth ulcers.  But now the swelling of his lips is occuring more offen I feel I need to get more tests done. As the thing I am picking up more from this forum is if you have Granulomatous cheilitis crohn's usually follows!!!


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## DustyKat

Hey gcmunro, 

It is not uncommon for the extra intestinal manifestations (EIM's) of IBD to precede a diagnosis and these EIM's can be present for quite some time before their clinical evidence in the intestine. 

Mouth ulcers are another common EIM of IBD. 

I think you are right in thinking the time has come to revisit testing for your boy. Perhaps start with blood and stool tests. They should do baseline as a matter of course but also ask that they do ESR and CRP (inflammatory markers) B12, Vit D, Iron studies and Folate plus faecal calprotectin. Then move on from there. 

Dusty. xxx


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## Kip1

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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## Jam300

ameslouise said:


> 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?


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## j.bug

breesie said:


> 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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## Paige

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-specific/orofacial-crohn.html


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## Jam300

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.


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## Paige

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 !


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## Jam300

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


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## Paige

http://www.bsom.org.uk/PatientInformation/dietcinbenz.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 !


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## Lily's of the valley

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


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## Lily's of the valley

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


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## IrritableBob

j.bug said:


> 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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