Crohn's Disease Forum » General IBD Discussion » Swollen lip linked to crohns?

04-15-2016, 06:13 PM   #1
Join Date: Apr 2016
Location: Kent, United Kingdom
Swollen lip linked to crohns?

Hi I have been living with crohns for about 20yrs. It was about that long ago I was diagnosed and had to have surgery. About 6cm of large intestine and 4 cm of small intestine removed either side of the ileum.
I was symptom free for around 16 years but about 4 years started to show a return. Luckily quite mild symptoms which do not really affect my daily life luckily. I currently take pentasa and colesvelum. My question is over the last few months I randomly get a top swollen lip. I didn't think much of it at first but it's happened again about the 5th time in a year. I just looked it up to try and find out if I may be allergic to something and came across oral crohns. Do you think this is related to my crohns? If so why has it only started recently. Should I be concerned? I have a check up in July. It's not sore just looks like I've had botox. It lasts a few days then subsides. It's not painful. Would just like to know if the is most likely cause? I do get a few minor ulcerations behind my top front teeth also. Any advice would be welcome as I only found a possible link to crohns by accident. Thanks Jason
04-15-2016, 06:33 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I sometimes get canker sores related to Crohns. I wonder if this could be similar?
04-15-2016, 06:44 PM   #3
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Clash's Avatar
Here is our wiki page on oral CD. You can also Google oralfacial granulomatosis and extra intestinal manifestation or EIM of Crohn's
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-16-2016, 03:16 AM   #4
Join Date: Jan 2016
Location: Leicester, United Kingdom

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Hey before I started on prednisolone I had problems with my top lip swelling up. It started off just being swollen in the morning and going down but then it became more permanent. When mentioned to my GP and consultant they never really said anything as they were more concerned about the stomach pain. Not much help but just letting you know your not the only one
04-16-2016, 01:30 PM   #5
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Join Date: Dec 2011
I think swelling lips is related to CD since CD can affect the entire GI tract from mouth to anus (it isn't restricted to inside the mouth only) a few years before I became sick with CD I woke up one morning with my lips (both) swelled up, I looked ridiculous and it was kinda painful, I hadn't eaten or drank anything out of the ordinary so I didn't associate it to an allergic reaction of any kind. I went to the ER and the doc there seemed perplexed and the only conclusion was that I must have had a reaction to something, he told me to ice it at home so I went on my way and iced it and it finally went away after a few days it was back to normal and it never happened again.

That happened when I was 19, when I was 15 I started noticing the perianal crohn's skin tags on my anus, every doc I ever saw said they were just hemmies which made no sense to me since I was never constipated or had any diarrhea issues either, just a normal once a day like clockwork poop, then I hit 23 yrs old and all hell broke loose internally with CD, that's how my CD all stared, externally with swelling lips and anus, the perianal crohn's skin tags would come and go on their own until I got pregnant and had my first baby at the age of 22, a year later was when my CD attacked me internally, the anal skin tags were throbbing just before I got sick with D, blood and mucous and the anal tags were so painful then when I started having multiple bowel movements daily (still formed for the first month or so then turned to D, and the usual CD symptoms) they banded the skin tags, wouldn't listen to me telling them I was also staring to have multiple but formed, daily bm's which was completely odd for me. They ignored and went ahead and banded what they thought were hemmies, shortly after that was when the D, blood and even more frequency came about. I've suffered for years, never being in remission until 3 yrs on Humira and I also ended up developing IBS mainly C about 12 years into having CD, I also developed lactose intolerance.

Needless to say my life is full of crap LOL!
04-16-2016, 05:30 PM   #6
Join Date: Apr 2016
Location: Kent, United Kingdom
Thanks for all the replies. I was quite shocked when the link to crohns popped up. But makes sense. I'm thankful my symptoms are relatively minor compared to others even though I have had a resection. Since then I've done quite well. I will mention it to my consultant at next appointment and have taken a couple of selfies to show. Just hope it does not get more severe and more frequent.

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