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Crohn's Disease and nasal sores

I was diagnosed with Crohn's Disease a couple of years ago now. For about a year, I have been getting nasal sores. It's almost like I'm getting canker sores in my nose. At first I thought it was allergy related, but now I'm starting to wonder if it is related to my Crohn's Disease. It seems like I get them especially bad just before a bad flare. Does anyone else get sores in their nose that they attribute to their Crohn's?
 
Yes, Alice. When all this kicked off I was getting them in my nose too. They seemed to appear at the same time as similar ones in the corners of my mouth, and were not like cold sores at all.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
yup - I've had them too...last year when I had a bout of strep, I broke out in sores all over the inside of my nose and my lips.....
 

Astra

Moderator
Yeah me too Alice, and my mate Danielle who has UC
Must be an IBD thing!
Welcome to the forum!
xxx
 
I get them also! I have had them for moinths now, they take forever to heal! I am on Cimzia injections for my Crohns. I have often wondered if they are from my Crohns bc my allergies have been bad here lately but I have never had these sores in my nose like I do now, they hurt really bad. I wonder what causes them?
 
I hadn’t put that together either, but I had them terrible before I was diagnosed. Since I have been on the Remicade I don’t seem to have a problem with them.
 

ameslouise

Moderator
Whoa. Is there no end to what is Crohn's related??? I have had a sore in my nose since after my surgery (4 months). It just won't heal. Of course, I keep picking at it, but still, it just won't go away. Never thought about it being CD related!

Thanks for posting this thread, glad to know i"m not alone!! -Amy
 
ZOMG Me too. I have this scabby sore thing in both my nostrils and it wont completely heal. I am guilty of picking at it too. hehe.
 
I have got one in my left nostril right now... it has been there for almost two weeks and started exactly a week after I tapered down my dose of entocort from 6mg to 3mg. At the same time the nose sore started, the nausea kicked in... the joint pain... stomach aches and diarrhea ... So I truly believe that it is definitely CD related!! Needless to say I have gone back up to 6mg again... but this sore just does not want to budge :-(
 
I too have had problems with nasal sores in the past. Interestingly, I cannot recall ever having problems with this since taking azathioprine.
 
YEP iVE GOT IT TOO :) LEFT NOSTRIL only .. plus i did have sores in the corner of my mouth .. i didnt relate it to Crohn's either . thought it might be a defiency of some kind .. i waas very low on pottasium , magnesium and calcium just befor my April op , haVING IT ALL ORALLY NOW , my pottasium keeps droping gthon , wonder if its related . i was very dehydratyed tho ..

Its like a lil club here .. lol
jan
 
Why don't they tell us what to expect? It's not as if we have some neurotically induced ailment that we may try to 'big up'. This forum has made me feel human again and I am starting to feel less like a freak...a bit...
My theory into why Crohns is so little researched is that in itself it's not life threatening. There are times, at it's worst, that I've wished that I did have cancer; at least then you can get answers and sympathy!
The need for morphine during blockages is intense but I'm working hard to avoid A&E, the last visit was 7 hours before a bed could be located and being hassled by drunks looking for cigarettes. The staff were so busy they didn't have time to intervene!

Still...could be worse, eh?
 
what we all seem to have in common is a sense of humour! and positivity!
Is it always like this for you all? I have times when I'm just so tired...of the frequency, the changing bags( ileostomy), headaches and generally being fed up that I could go to bed and not get up!!!
I'd love to know I'm not alone and hear some moans,'cos I feel like I'm the only one not coping ...it'd make me feel more normal(?)
 
Wow.

So, I've had a raw sore appear in both my nostrils next to the septum. I didn't think of it as being Crohn's related.

I rubbed extra virgin organic coconut oil in my nostrils for a few days and the sores went away.
 
Yeah, I turn into rudolph every few weeks or so. Usually the left nostril gets sore and the top of my nose gets really red. Seems surprising it would have anything to do with my digestion, but I did not have that problem before I had digestion difficulties. It hasn't happened since I've been on the prednisone, and hopefully the Imuran will stop it after that.
 
Nose Sores

I've been getting them a lot too, now that winter is kicking in. Not sure if it's the Crohn's or just the real dry environment in the house. I've been using saline nasal spray...seems to help some.
 
Has anyone else had trouble with really dry skin on their knuckles? It may be to do with the cold weather we're having but it's JUST the knuckles...and I use cream every night and rubber gloves...
What the **** am I doing moaning about dry skin? Up very half hour last night. Feeling knackered...lovely to share with you all, sorry to be a moaner xx
 

David

Co-Founder
Location
Naples, Florida
Has anyone else had trouble with really dry skin on their knuckles? It may be to do with the cold weather we're having but it's JUST the knuckles.
Dry skin on the knuckles is actually a common symptom of bulimia. Obviously that's not what you have, but that tells me it's a deficiency is something so I did some research. this site feels it's a deficiency in essential fatty acids. Have you thought of maybe trying some salmon oil or krill oil capsules?
 
Thanks David for your reply, useful tip, I do take supplements but may have to start taking some oil capsules. My husband routinely takes Cod Liver Oil, is that any good?
Our bodies are so complex that it amazes me that some of the symptoms are related to Crohns...rotten disease. Do you know if much reseach is going on?
many thanks again...it's so good to be talking to people who know what we're all going through!
 

David

Co-Founder
Location
Naples, Florida
No, stay away from cod liver oil. It's way too high in vitamin A which is bad for most Crohnies. Krill oil (first choice) or a high quality salmon oil is where it's at.

Tons of research is going on for Crohn's Disease and I feel like slow progress is being made. With that said, I also feel that a lot of symptoms related to Crohn's are due to vitamin and mineral deficiencies and the answers are already out there, we just have to find them and sift through the junk.
 

Jessi

Moderator
I've had one in my right nostril for a week so far.

I get them several times a year, and they take forever to heal.

So it must be more than a Crohn's thing, but also a UC thing.
 

Jessi

Moderator
Just got back from my dermatology appointment. Apparently, the nose sores are part of a recent psoriasis flare. I have now 3 spots in my right nostril, both ear canals, my left eyelid, and the nape of the neck.

Doc says it's not common to get psoriasis in the nose, but it does happen. And in my case, it certainly did. The ears are also uncommon, but not so much as the nose.
 
I have sores in my nose right now, my right side is so bad I can't even blow my nose. Has anyone tried a humidifier to make them better, I know its really dry here this time of year.

Katelyn
 
I actually have a hole in my nose! It started out as sores in each nostril and then went right through. I mentioned this to my last 2 GI doctors thinking it may be Crohn's related, but neither of them seemed to think it was. I'm so glad others with Crohns have had the nasal sores!!!!!
 

Lisa

Adminstrator
Staff member
Location
New York, USA
I have a small crack/scar in my left nostril right at the top from one bout with sores in my nose (and yes, I pick too!).....I had one just a few weeks ago again, I also get cold sores and keep Zovirax on hand to help keep them from getting too bad.....I will use it in my nose too (nolt sure if you are supposed to!).....

When mine come on, they feel like a cold sore coming on - the tingly/numb feeling that comes with the activation of the virus.....]
 
I have one too on my right side & not for the 1st time. Its going down now but started just before I started tapering off entocort.
My doc says it is related to the Crohn's as I have some narrowing which is causing bacteria & all sorts of nasties to back up in my GI tract & thats why & had the throat, mouth, tongue & nose sores.
So glad we have no special events to go to as it looks a bit yucky & although my friends & workmates know what the matter is the lady I sat next to on the train the other day couldnt move far enough away from me. Was quite funny really. If she had moved any further she would have been hanging out of the window lol.
 
It first comes out red then goes like an ulcer & can get yellow in it then scabs. Not good as its very sore.
 
This is crazy! I've been getting them on and off for ages! I have them on both sides at the mo but worse on the right. It's caused me to start sleeping with my mouth open
 
I have had them too. My GI said they are not crohns related but sounds like he was wrong. Has anyone been told that they are caused by crohns by their GI?
 
Was just wondering if any of you get painful legs per flare up. I can usually tell when I'm about to take a crohns dive as my legs start throbbing in bed.

As for the nose sore I have only ever seen my GP with them and she just gives me antibiotics to clear them up.
 

Spooky1

Well-known member
Location
South Northants
Yes, a gp years ago told me leg pains and swelling are related to the crohns. mine swell to the point of getting stretch marks! I'm a little skinny one too so thats saying something. i just can't be on my legs for long. yes, and i too do have those sores up the nose, corners of outer eyes and corners of mouth too
 

David

Co-Founder
Location
Naples, Florida
Painful legs can sometimes be a result of magnesium deficiency and the swelling can be a result of iodine deficiency.

A flare coming on can cause deficiency as it would lead to increased nutrient needs AND inflammation would lead to malabsorption. Diarrhea then makes matters even worse.

Spooky1, all those sores scream B vitamin deficiency (MAYBE iron but that would potentially be caused by an underlying B2 deficiency). For example, the sores on the corners of your mouth sound like Angular cheilitis (also called angular stomatitis). In people with Crohn's Disease, these are commonly caused by deficiency in one more more of the B vitamins. Same with the mouth sores. I'd strongly suggest discussing taking a quality complex B vitamin with your doctor.

When you talk to your doctor about this, print out and take this paper with you as not all doctors are going to know this. Then highlight this part:
For patients not responding to simple therapeutic measures, the next appropriate step is to arrange full hematological screening with measurements of hemoglobin, mean corpuscular volume, folate, vitamin B2, vitamin B6, vitamin B12, serum iron, ferritin, transferrin, and fasting blood glucose. Nutritional deficiencies, especially of iron and B vitamins, are important in the development of angular cheilitis.
If you need to present the paper to your doctor, do so kindly. We all can get defensive and we want our doctors to feel comfortable working with us and learning alongside us, we can't expect them to know everything. Present it in a supportive way. :)

Crohn's Disease is characterized by malabsorption and nutrient deficiencies. Proper supplementation can make a world of difference in these extraintestinal manifestations.
 

Spooky1

Well-known member
Location
South Northants
Wow, Thanks David,
I remember years ago my gastro bloke said, its a shame you live in cournwall county and not devon because if you lived in devon you could have b vitamins injected. I shall print the evidence and take it off to gastro bloke on Wednesday. thank god for this site, i've never had this much help because some of us never really get out to know other sufferers and their tips etc. Best forum ever, thanks
 
I get little sores in my nose too..... I. Saw this thread and had to see if it was same thing as I get. And guess what? ????? It is :) the little things hurt and over stay their welcome.
 
This sounds all too familiar! I went to my gp and had it tested and it came back positive for golden staph :/ apparently we all have it in our noses and sometimes when there's a break in the skin, the infection can get in. Most normal people won't even notice anything and get no sores etc, but us crohnies with our low immune systems will always get the infection *sigh*
 
Mine is in my right nostril. And you're right Kiwi, it's good to know that we're not alone with all these weird little oddities happening.
 
Mine doesnt discriminate, I get them on both sides! Actually I started getting them a few weeks, maybe a month before I was diagnosed. I had just never connected it to this until this thread. I get bumps on my head too, I wonder if its the same thing.
 
What do you know??i was pretty sure the inflammation at the corners of my mouth were related to crohns as I always get them when flaring. But I've also had fissures in my nose at the same time with sores that are a big bother!
 
HAD to chime in, although belatedly. Nasal sores, YUP...can't get rid of them sometimes! Lovely manifestation, huh? Lately, before bed, I have been using a Q-tip and adding a smidge of antibiotic ointment and it seems to help a little.
 
Lulubelle..I've done the same thing..antibiotic ointment and a and d..I have tried everything for the corners of my mouth with no success..anyone find anything to help?ive done all lip ointments you can think of!
 

Spooky1

Well-known member
Location
South Northants
i use dissolved sea salt in warm water and cotton wool. does help sometimes. can't think of anything else that works. I also get splits in the outer corner of my eyes and around the curly part of the ears too. can't use the sea salt solution around the eyes though
 
I had the horrible painful scabs in both nostrils for a week, but thanks to advice from this thread, I was able to clear them up with 3 days of neosporin. What a relief!
 
I have one in each nostril as we speak. Makes my whole nose sore to the touch.

I relapsed, and went on pred temporarily and have been slowly weaning. I think my body is not accepting the lack of pred very well as i wean.

Also on imuran and pentasa.
 
I was diagnosed with Crohns just over 2 years ago, i have had no surgery yet. I am taking pentasa only. I have had 3 colonoscopies + 3 gastroscopies. I have had nasal sores in both nostrils on and off for around 6 months now. Over the last 2 weeks i have a very dry throat right in the area where the nose canal joins the mouth, i have no feelings of being unwell so i am certain it is connected to these nasal sores.

I will be seeing my doc soon, hopefully i csn get a fix on this asap as it is starting to get to me.
 
I get hem too and they hurt like hell!!

We to the docs and they gave me a repeat subscription for Aciclovir. It treats herpes simplex virus infections which is what we have...or better known as coldsores.

We all carry it but as our immune system is shot we are more prone to attacks.
 
I haven't even been diagnosed with Crohn's yet - still waiting on some diagnostics to find out what's going on with the thickening in my intestine, but did a search for Crohn's and nasal sores (which started about a year and half ago, maybe less, but more frequent) and I feel like I just diagnosed myself as formerly I did not have nasal sores. I've sometimes noticed mouth sores, but nothing major or nearly as painful as the nasal sores become.

I also started getting weird nose bleeds and never used to suffer a bleeding nose. Basically, I think I need to blow my nose, like it's starting to drip and then I do and it's blood, not snot. It happens randomly. I assume this is related too.
 
Strangely enough I always have a bloody nose and it's constantly congested. It's weird how all these small symptoms like mouth ulcers and this all may be caused by IBD.

I sometimes think I'm falling apart with the amount of small symptoms I have that I wouldn't think were related.
 
Add me to the list of annoying nose sores.. So painful that it's tender to touch any part of my nose. I thought it was normal and everyone got them from time to time.... Funny how things start to click when you browse this forum!
 
(Not so) hillarious story!

I've had sores in my nose for as long as I could remember. I remember picking at them as a child. Come adulthood and it was almost a daily ritual to clear out my nose because I felt so stuffed up - which usually meant removing some kind of scab. Nose was constantly sore but I assumed everyone had that problem - after all we all get bogies, right?

Fast forward to last year and my nose is REALLY sore and I'm getting diagnosed with constant sinusitis. I'm using one of the many prescribed nose sprays, happen to look in the mirror and suddenly realise I can see the tip of the spray out of the OTHER nostril. :eek: The "sinus infection" is no better either - constant pain across my cheekbones and down the sides of my nose from my forehead.

A few experiments with a cotton bud later and yep, there's a hole there. I go to the doctor, tell him, cry a lot and get sent away with more antibiotics. He doesn't either hear or believe me when I say about the hole in my nose.

Anyway, they don't work.

I go back again, hysterical, still mumbling about the cotton bud and this time see a nurse. She declines my invitation for me to show her the hole (lol) but appears so concerned by the state I've worked myself up into (my this point I'm convinced its cancer!) that she refers me urgently.

Turns out I have a deviated septum, the left nostril is blocked and I'm missing a good section of my septum - which is how I've always been able to breathe okay (the hole allowed better airflow) He's concerned some kind of tumour has blocked the left side and so I get CT's and MRI's. All clear.

Then I'm tested for waegners grandumatosis - which is apparently more common once you have one AI disease (I have 3) - biopsy inconclusive - no signs of anything sinister just a perforated septum, blood work negative.

I'm still complaining of the insane pain. Doctor advises I coat the raw edges carefully using a cotton bud and vaseline. At first I'm doing it dozens of times a day, a year of that and I have to do it progressively less - down to maybe twice. Funnily enough, it flares similary to my crohns. Saline washes help too. I have a yearly appointment to make sure my nose isn't going to collapse (saddle nose) but otherwise, they've put it down to either potential crohns sores (very rare occurance but possible), Falling off my bike as a kid and then constantly aggrevating it, or overuse of steroid spray (however I discount this one as the only time I remember using that consistently was after I found the hole!)

I'm SURE it was one of the first signs of impending crohns and that they started off at least, as crohns sores. SO SURE. So those of you pick and aggitate them (and I know how impossible it is not to) try vaseline instead. I've been told that the hole in my nose is too big to close now without doing more harm than good - you don't want to reach this stage!

Weirdly, crohns meds never seemed to make a difference. I guess my recollections of the last 12 years (of having crohns) are mainly of having the hole already there - not of the actual sores themselves.
 
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