Crohn's and nasal sores

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britt1449
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Date Joined Apr 2009
Total Posts : 85
   Posted 7/30/2009 8:00 AM (GMT -7)   
I have been experiencing this for a few years, and at first, I didn't think it was related to my CD.  I thought it may be allergy-related. But over time, I realized it had to be connected because I would get these sores in my nose right before I was about to flare... it was like a pre-cursor to my other CD symptoms.  I did some research online, and I read some medical articles about it.  Come to find out, it is a symptom of Crohn's, although it's very rare.  Does anyone else have these problems?
Brittany
 
Currently taking: Humira 40mg/every other week, Imuran 50 mg/day, Zoloft 50 mg/day, vitamins and supplements, Phenergan and Lortab as needed, prednisone tapering down
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 7/30/2009 8:37 AM (GMT -7)   
I get these too. I never related them to Crohn's though. They are so painful and last a long time. I sure wish I knew a way to make them go away faster.

mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 494
   Posted 7/30/2009 8:46 AM (GMT -7)   
Hmm, I've had something similar. I was told by my university's health center I had MRSA and strep (!!) ...once I was able to get into my GP she said they were crazy (apparently you can't test for both with a single swab) and gave me some sort of topical thing and it cleared up. Right now I'm having a lot of bleeding from one nostril, but I think that's more related to my sinus infection...

I pretty much relate anything going on with me to the Crohn's, especially skin stuff since I now suffer from psoriasis and other crazy rashes. I have such atypical Crohn's, I pretty much accept I'll suffer from all the "rare" issues, and not the common ones (never have D, for instance...)
21 y/o, diagnosed 6/2007

Symptoms currently under control with Humira and a wheat-free, processed food-free diet. Beginning to have symptoms of GERD...


CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/30/2009 8:58 AM (GMT -7)   
My PCP told me it was due to the dry air(winter at the time I spoke to him) - it is now humid like crazy and guess what? I still have these nose sores. They haven't gone away since last September. I told my new Gastro about these sores and he said he had never had a patient complain of these. I wonder?

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 7/30/2009 9:06 AM (GMT -7)   
My doc says that I have UC not CD but I also get this sores in my nose so bad had them for a few weeks it was so bad that i could not touch my nose :S
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
Crohn's disease in December 2008 Then they changed it to UC in June 2009.
and Autoimmune Hepeatitis in July 2009


Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 7/30/2009 11:14 AM (GMT -7)   
I, too, get these off and on.  My GI doc tells me they are common for Crohns people.  They hurt and ooze and generally I just use a good antibacterial cream and they eventually go away.  I'm working on getting rid of one as we speak.

Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.  Currently have C-Diff.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 7/30/2009 3:22 PM (GMT -7)   
Glad I'm not the only one dealing with this!  It is very annoying and uncomfortable, to say the least.  I read that using antibiotic cream is just about the only way of helping them to heal, so I've been using it liberally.  It also helps prevent infection.  Good luck everyone!
 
Brittany
 
Currently taking: Humira 40mg/every other week, Imuran 50 mg/day, Zoloft 50 mg/day, vitamins and supplements, Phenergan and Lortab as needed, prednisone tapering down
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 8/3/2009 10:57 PM (GMT -7)   
I know that nose sores and mouth sores are part of crohn's.Mine would happen every time I had
a flare. My primary care doctor told me what they were not my G.I. doc. My primary doc.
would do swabs and they always came back negative for herpes or infection. One of the good things about this web site is you find that other people have a lot of the same issues going on but your
doctor will tell you they have never seen this before or it is uncommon. I have always had sinus
problems and I read about a study that was done that made a connection between sinus infections
and crohn's my doc. did not know anything about it. When I had my colon removed my sinus
problems went away. I think we need to do a poll and have our own list of issues that we all have
experienced. Doctors really know very little about crohn's and colitis or about the drugs they give
us.We don't know what the long term effects of humira and remicade will be. Look at all the drugs
everyone on this site is taking or has taken. Most of this stuff in combinations could be destroying
our liver our bones and our kidneys. I have a friend who is a G.I. doctor and he said he would
not take some of these drugs but he gives them to his patients because he said the truth is he
doesn't know what else to do. I think there has to be a better way to process all this information
for all of us and to have better treatment options that are based on real patient responses not the
drug companies clinical trials because there trials only report what they want.

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/4/2009 10:49 AM (GMT -7)   
Just got over the nose sores, now have a mouth sore.  It's just not fair ya know it?  shakehead
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 8/4/2009 5:09 PM (GMT -7)   
Well said, Fruitcake. It's encouraging that science is progressing to help people with certain debillitating diseases, but you're right- we really don't know the effects of these drugs we are taking. Most of us will do whatever it takes to achieve some sort of "normalcy", to be able to function in society without pain, nausea, fatigue, restroom-runs, etc. It's very important to do as much research as possible before starting any medication, because you know your body better than any doctor.
Brittany
 
Currently taking: Humira 40mg/every other week, Imuran 50 mg/day, Zoloft 50 mg/day, vitamins and supplements, Phenergan and Lortab as needed, prednisone tapering down
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 8/4/2009 5:48 PM (GMT -7)   
My old derm told me they were cold sores. I use valtrax and a cold sore ointment and they clear up pretty quick.
Jodi

Remicade and 6MP


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/9/2009 3:59 PM (GMT -7)   
I get cold sores on the outside of my mouth.  The sores I'm referring to are inside of my mouth and they aren't cold sores.  They are more like canker sores but I do believe they are Crohns related. 
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 8/9/2009 5:18 PM (GMT -7)   
I get canker sores too, but in my nose I get cold sores. Just like for the lip cold sores I use valtrex and zovirax and they clear up pretty quick.
Jodi

Remicade and 6MP


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/9/2009 5:50 PM (GMT -7)   
I get nose sores too. I always wondered why I got them, but now thinking about it, I do get them more when I'm flaring. Any time I get a sinus infection, I get them also, and put them neosporin in my nose a couple times a day. My PCP has commented on them and suggested the neosporin, but never said anything about them, so I just assumed everyone got them from time to time.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/9/2009 7:15 PM (GMT -7)   
Yes I get nose sores too. I find that I pick them in my sleep and have taken to wearing gloves to bed to stop this! OUCH they can really hurt.
Jo

lululupus
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/29/2009 3:18 AM (GMT -7)   

Hi All:

NASAL SORES R US...

I'm new to the site as of this moment. 

Having just read the list of comments posted about nasal sores and Crohn's, I want to quickly share with you my diag-noses.  Ha!  No pun intended.

In 1982 I was first diagnosed with "acute severe ulcerative colitis".

After a number of debilitating episodes requiring long hospitalizations, TPN, blood transfusions and drug experiments, I managed to get the colitis under control with lifestyle changes I will explain later, not tonight.

My reason for writing today is that I too have suffered with these nasal sores that flare and subside, each flare different, some very aggressive, painful and spreading over larger areas inside the nose, and out.  The sores show up in my mouth.  These nasal and mouth sores plus other symptoms and illnesses including arthritis eventually led to a diagnosis in 1998 of Primary Lupus with Secondary Sjogren's.  Some of you may find answers researching these terms.

It's after 3am and I must shut down for the night.

Bless you all and thank you for sharing your stories.  Very helpful and appreciated.  To be continued...

Sincerely,

lululupus 

 


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/29/2009 7:40 AM (GMT -7)   
Yes! I have never been able to find literature on this or received confirmation from my old GI, but I started getting nose sores shortly before my first flare. They are only ever in one nostril at a time, usually just inside, and it looks like a small but deep cut. It continually scabs up and usually takes 4-6 weeks to go away. During my flare, I would often have a brief respite before a new one would appear. I have had one or two while in remission, but I got one a couple weeks ago, perfectly coinciding with the beginning of my current flare, so in my mind, they have to be connected.

I think most people aren't sure if it's directly connected to Crohn's since the nose is not part of the digestive tract, but it is certainly reassuring to me that so many others experience this nasty symptom. If anyone has found articles regarding this, I'd love to read them.
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again. Waiting to see GI.
Current meds: 4g Pentasa, 150mg Trazadone, Ativan as needed


Tj1
Regular Member


Date Joined Jul 2008
Total Posts : 71
   Posted 8/29/2009 11:12 PM (GMT -7)   
I get these sores too. I usually have to get on an antibiotic to get rid of them. I have noticed mine usually come before a flare.
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 allergic to Asacol,    Colazal made Crohn's worse,      Prednisone 20mg X2 daily   (off Pred now) 
 Imuran 50mg X 2 daily,      Hyzaar 50-12.5,Toprol XL --  Hypertension
 Insulin   --   Diabetes,      vitamin...... 
 
First Remicade infusion 8-9-08
 Had allergic reaction on 5th infusion took benadryl got to finish
 Went for 6th took benadryl before infusion had reaction stopped
 Remicade.
 
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/29/2009 11:34 PM (GMT -7)   
I get these as well in addition I get a rash on my fingers.  For the sores in my nose i tend to use neosporin(sp?) this also tends to help me avoid colds
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


Shannon23
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/5/2010 5:41 PM (GMT -7)   
Thank you so much for all of your responses on this subject.  I have been a Crohn's patient for over 33 years and have experienced nose sores for over 5 years.  I have traced the cause to Humira, CimZia and Remicaid.  When I can stop these drugs, my nose clears up completely.  I have used neosporin to ease the pain and have taken several doses of antibiotics, which will clear it up temporarily but the sore always come back especially after an injection of the aforementioned drugs.  The ENT doctor did a cat scan and told me my nasal cavities were clear and that he did not know what was causing the sores.  Now I am experiencing symptoms of the Crohn's however, I refuse to take any more of these injections, which I am now certain are causing the nose sores.  I have read other articles on this topic and am going to try some other remedies including Bactroban, which I have not tried and swabbing the nose with peroxide, which I found helped someone else.  My point is this.  The doctors are so interested in selling drugs, they don't care about the side effects.  Is anyone else as sick of doctors as I am.  The only time I do well without the poisonous care of a doctor is when I am eating a gluten free diet with plenty of fresh, preferably organic vegetables and drinking a lot of water.  I will report in about one month on my progress off of these drugs and on a strict diet.  Believe me, I have tried everything and this is the only way to bypass the symptoms of Crohn's Disease.  Maybe I am wrong, but we'll see.  I am putting this to the test again. 

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/5/2010 6:08 PM (GMT -7)   
I'm curious about the nose sores... Right when I started mtx (7 months ago, though I'm off now) I started getting bloody noses. It's mainly on my left nostril. Never in my life have I had nosebleeds, then they became daily experiences! I even dripped blood on the floor a couple of times! It seems to be getting a little better since I stopped the mtx, but still sort of bloody. Is this what the rest of you with nasal issues have? What type of "sores" - like ulcer types of sores?
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/5/2010 10:08 PM (GMT -7)   
My PCP prescribed an antibiotic gel that I'm supposed to use twice a day in my nose when I get them. They still hurt, but they go away quicker than if I didn't use anything. It's called mupirocin (sp?). I used it also when my incision got infected. They said only to use it when I need to because it's strong and they don't want you developing a resistance to it.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

Shannon23
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/6/2010 9:26 AM (GMT -7)   
I couldn't resist another blog.  All of you with nose sores are on Humira, Remicaid or CimZia including me.  As I said in an earlier blog, I really think it is the medicine and not the CD.  When I came off of the medicine two years ago, my nose cleared up.  When I went back on the medicine, my nose sores came back and I have only had brief moments of relief from the sores, always between long periods of no medicine.  What to do?  I do agree with a former blogger about the gluten free diet and no processed food.  I have a doctor's appointment in the morning to get some of the medicine recommended on the internet for these sores ie Bactroban and/or mupirocin (sp?).  Does anyone else have any other suggestions?

Post Edited (Shannon23) : 8/6/2010 5:21:47 PM (GMT-6)


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/6/2010 12:33 PM (GMT -7)   
Don't pop them...I've tried to scrape them to get the fluid out of them and it just makes them scabby and worse!!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/6/2010 10:07 PM (GMT -7)   
I get these as well I try to use bacitracin (triple antibiotic ointment) the ointment not the cream on these taht way it has the consistancy of vasoline to keep the area lubed up and stop it from resplitting and also keeps the bacteria out. Thats the best I have found for them I have one atm as well. I have suffered from these long before I was Diagnosed os I foundit id my CD and not the meds
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 
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