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


 
04-18-2011, 08:34 PM   #1
MyButt
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Crohn's Disease of the lips

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?
04-19-2011, 12:48 PM   #2
David
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Hi there,

Does your doctor have you on any medications currently? Have you discussed your concerns regarding your lips with him or her?
04-19-2011, 05:50 PM   #3
denisk
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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...
04-20-2011, 09:56 AM   #4
Iya
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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!
04-20-2011, 12:11 PM   #5
ameslouise
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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
04-20-2011, 07:39 PM   #6
hawkeye
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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
04-21-2011, 08:32 PM   #7
breesie
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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.
04-22-2011, 07:40 AM   #8
BigRed
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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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07-29-2011, 07:09 PM   #9
M8ya
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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!!
07-29-2011, 08:02 PM   #10
denisk
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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.
07-30-2011, 08:59 AM   #11
Nico85
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this may sound daft but try taking 2 anti-hystamines....
08-01-2011, 07:04 AM   #12
Jessica
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I have always had severe chapped lips. I always blamed it on my smoking though.
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08-01-2011, 06:28 PM   #13
lookitsjen
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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
08-30-2011, 08:19 PM   #14
ameslouise
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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-Advan...4763484&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
02-10-2012, 07:24 AM   #15
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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
07-14-2012, 06:49 PM   #16
Paige
 
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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 .
09-05-2012, 05:04 AM   #17
b1kerj1m19
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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
09-05-2012, 09:52 AM   #18
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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.
09-05-2012, 10:12 AM   #19
Aussie
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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.
09-05-2012, 03:02 PM   #20
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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
09-05-2012, 03:05 PM   #21
David
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pamshusband, do you have Melkersson Rosenthal syndrome? Do you have facial paralysis?
09-10-2012, 03:53 PM   #22
Paige
 
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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
09-18-2012, 02:03 PM   #23
401kman
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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.
09-18-2012, 03:53 PM   #24
Paige
 
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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! :-)
09-18-2012, 04:41 PM   #25
401kman
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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!
09-18-2012, 05:49 PM   #26
RCDC
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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?
09-18-2012, 05:54 PM   #27
RCDC
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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
09-18-2012, 06:23 PM   #28
401kman
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I cant reply to your private email as it indicates your space is all used up
10-12-2012, 07:10 AM   #29
gcmunro
 
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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!!!
10-12-2012, 07:33 AM   #30
DustyKat
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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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