Sinusitis and Crohn's

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Styx
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Date Joined Jun 2007
Total Posts : 60
   Posted 8/25/2007 10:16 PM (GMT -7)   
Ok well since I am starting to accept the fact that I have this disease... I have a new question! Is sinusitis associated with Crohn's? If it is, it is by far the worst symptom I have of the disease!! I have what is considered very mild Crohn's, at least pathologically, but I have the most treatment refractory sinusitis on the planet. I have had numerous surgeries and they have removed numerous polyps during surgery, but all of them were very tiny (i.e. the polyps were not obstructing.). Anyone else have terrible sinusitis here?

(Sigh) Well after a prolonged flirtation with denial, I suppose I am beginning to accept the fact that I have this disease (though if you want to argue with me, be my guest!). Thanks Prometheus :)
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking Pentasa and supplements, but will need to go back on steroids soon. Doctors don't want to give me Imuran until they are positive this is IBD.


curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 8/26/2007 12:10 AM (GMT -7)   
STYX hi and welcome to HW,

We are glade that you found us all though I'm sorry that you have Crohns; but you have come to the right place and we will help in any way that we can.

I was DX with Crohns four and a half years ago and at the time I lived in another state and even thought I was reasl sick I had no problems with my sinusitis untill I moved back to my home town in another state after devorcing and I started haveing issues with my sinusitis.

I had surgery last year and I am so glade that I did because I have not had any more problems so for me it was well worth the pain I had for having surgery.

We tryed every thing we knew to try and nothing helped but the surgery.I told my Doctor that I never had these issues untill I moved back home.He told me that the climate had alot to do with it.

In my case mine was not related to my crohns.My oldest sister and my only brother both have chronic sinusitis issues.infact my oldest sister is have surgery for this on the 6th of next month.neither one of them have crohns or any other typ of illiness.

I wish I knew what to tell you but it does sound like you are not going to getting any reliefe so you may want to talk to your Doctor and see what he recomends.Good luck and please let me know how you are doing.
Curley
.........
 


Bible
Regular Member


Date Joined Jul 2007
Total Posts : 188
   Posted 8/26/2007 5:33 AM (GMT -7)   
I have lots of sinus infections throughout the year. It is not just a common cold. I get extremely sick and unable to work due to the sinus infection. I thought it was b/c I was on immune suppressant. I am a teacher and when the kids start getting their "back to school" colds I try to stop breathing for a whild. LOL. Mine also seem to last alot longer than anyone elses. I'm not sure the reason.

dragonfly137927
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Date Joined Sep 2006
Total Posts : 2527
   Posted 8/26/2007 9:57 AM (GMT -7)   
I have found that I got less infections than most I worked with. My nasal pasages get really dry and they get cuts in them, this has been talked about before here. I use neosporin and place it in my nostrils. I wonder if when breathing the antibiotic in neosporin kills thatever germs I may breathe in
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
 
 


Marie-Claire
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Date Joined Mar 2007
Total Posts : 900
   Posted 8/26/2007 11:32 PM (GMT -7)   
I have chronic sinusitis and crohns disease. I remember reading somewhere that the two are possibly related in the sense maybe that your immune system is out of whack so I guess that makes it easier for other bacteria to take advantage of the situation. It's always a vicious circle for me. When I get a sinus infection , I have to be on antibiotics for months...in which time my crohns unusally flares. If my crohns is flaring I'm usually run down and then my sinuses act up. Round and round in circles.
Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


beave
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Date Joined Mar 2007
Total Posts : 1091
   Posted 8/27/2007 12:31 PM (GMT -7)   

I too have Crohn's and chronic sinusitis.  I've had 4 sinus surgeries since 2003.

There was a study pubished in the American Journal of Rhinology (2003) that showed people with Crohn's have a higher incidence of chronic sinusitis vs. the general public.  The study was based on patient surveys and wasn't very tightly controlled, but it did show an elevated rate of sinus problems in Crohn's patients. 

Chronic sinusitis is one of the more common chronic conditions, so lots of people have it but don't have Crohn's.  But for people with Crohn's, it's definitely something to look out for.  People with Crohn's often have lots of allergies, and this can lead to chronic sinus problems.  Acid reflux can as well.  And immunosuppression from Crohn's medications can lead to sinus problems too.



starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 8/27/2007 10:36 PM (GMT -7)   
I had the worst sinusitis for years - up to about 2 years ago. After battling yet another infection that eventually went south to my lungs, I discussed taking a pneumonia shot with my PCP. I got the shot coming on 3 winters ago and I have not had one sinus infection since. I have on the other hand endured a recent persistent (but now gone) staph infection in my nose instead! I continue to have a problem with allergies and dryness in my nose, but I have not had my annual 2 mega sinus infections since my pneumonia shot. By the way, I also haven't had a cold since the shot either.
"My "Trifecta" - CD, AS & RA...

Some days you're the bug, some days you're the windshield

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 8/28/2007 6:25 AM (GMT -7)   
Styx, I'm curious. With all your sinus issues, has your ENT doc ever suggested a saline nasal wash? Not just the spray bottle thingy, but the irrigation system? We have a friend (with LOTS of sinus issues) whose ENT gave them this giant syringe to use in the shower. I think the neti pot system is better. If you're not familiar with it, Google "neti pot" or "jala neti." I now know many people who use this as a preventative. I believe it's from Ayurvedic medicine. Both my kids are using it regularly. I'm hoping it will help them avoid the Jan-Feb sinus infection this winter!!! Good luck to you!
EMom

Mother to 15 year old boy just diagnosed in June, 2007. Taking Asacol, just finished Prednisone, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.


GKLOR
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 8/28/2007 6:50 AM (GMT -7)   

STYX:  I don't know if there is a correlation between IBD and sinusitis. Personally, I believe there is.  I have asked, and thedocs don't seem to think so.  But I have a hard time believing it. I can tell you, I NEVER in my life had a sinus infection until I was diagnosed with IBD.  Now, I seem to get them approximately twice per year and it takes usually 15-20 days (not the usual 10 day course) on a strong antibiotic such as Levaquin to get rid of it.  I am usually miserable for days. I cower when my daughter or her friends come into the house with colds because if I get it, it starts the whole cycle.  Good luck.

Female, 46, indeterminate colitis for 9 years. 


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 8/28/2007 12:10 PM (GMT -7)   
EMom, I irrigate with a Waterpik and a special adaptor tip that goes into my nose.  I usually do it about twice a day.  When I have a cold, I do it several times a day.  It has helped me tremendously.

wannabehipster
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 8/28/2007 3:41 PM (GMT -7)   
i used to have lots of problems with drying and scabbing in my nose too.

i found that Polysporin is more effective than Neosporin, apparently some people can develop allergy or sensitivity to one of the anti-bacterial in neosporin (three agents vs. two agents in poly) plus you can buy polysporin complete from Canada with lidocaine and it helps the pain...

good luck!

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 8/28/2007 9:00 PM (GMT -7)   
Oh, me too on this one. I had surgery that didn't work. I am so convinced that this is inflammation related to crohn's. I use Nasonex, which sort of helps. My nose is so dry, and feeling stuffed almost all the time, it actually whistles at nighttime!!! The only time I get relief is when I'm on prednisone.

Crohnboy
New Member


Date Joined Aug 2007
Total Posts : 3
   Posted 8/29/2007 4:23 PM (GMT -7)   

Interesting, this January, I had probably the worst case scenario of sinusitis -- everI had no idea that it could be interlinked to Crohn's!  Wow! It seems that every (or every other) f'n winter, I come down with sinusitis!  I know this may sound strange, but on a comparative scale, bring on the cramping and diarrhoea! -- as compared to that sinusitis crap!  As I wish for neither (of course), but I must say that I really detest experiencing sinusitis!  All that coughing, spitting phlegm up, sneezing, and all that crap!  I hate it with a passion!  (I think you get the idea as to the degree of just how much I do not like to have that sinus flaring up business)!

Now, I suppose there is no way to avoid sinus flare-ups (especially having CD) now is there?  If so, please let me know!

Thanx. yeah


killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 8/29/2007 4:27 PM (GMT -7)   
Just a random thought - I just read that Candida can cause chronic sinusitis. Don't know if it's true or not but thought I'd throw it out there.
36 year old mother of a fabulous toddler.
Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Tapered down off Entocort mid August. Now on Asacol 2400, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and slight burning, gastritis symptoms, horrible right hip and low back pain.


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 8/30/2007 5:59 PM (GMT -7)   
Woah! I actually just checked this thread after several days, assuming that no one would be able to relate... goodnight! Ok well, in that case I desperately need advice!! My sinusitis is SOOOO bad, but its weird too. I had the surgery, and I haven't had any sinus infections necesarily (my nose doesn't get congested) but I have THE WORST post nasal drip. I am coughing up phlegm all the time and it makes it very difficult to sleep. Nothing I have tried has helped... I am doing steroids sprays, antihistamines, expectorants, nasal washes, antibiotic washes, fungal washes, everything!! It interrupts my every thought and is practically debilitating. It has come and gone for the last year and a half, but admittedly, I have had sinus issues since I was born.

I have gotten rid of it before with antibiotics several times, but I had to take very high doses, and it comes back after several months! Steroids do keep it away... but I don't need steroids for my crohn's!! Any suggestions???
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 8/30/2007 6:02 PM (GMT -7)   
Oh by the way, I just got off my usual antibiotic regimen and it failed miserably. So I am stuck with it. And by the way, this is the main reason I had the sinus surgery and it apparently did nada!!

Thanks and I'd appreciate suggestions... maybe I should post in the allergy forum??
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 8/30/2007 7:42 PM (GMT -7)   
Hey Styx,

Welcome. Hope I'm not too late to throw in my 2 cents worth. Mucous helps protect the entire digestive tract. You will notice all kinds of changes in your sinus/breathing depending on the CD meds and your current gut condition. I've had sinus migraines for YEARS! This goes well with the Imuran migraines I have as a drug side effect too. Just started Humira about a month ago and within 48 hours of my first loading dose my sinuses cleared! Also, an interesting subnote...I was born without my left upper sinus cavity?!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Remicade, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain.  Lactose Intolerant?
 
 
Attitude: When I stand before G-D at the end of my life, I want to be able to say; I used every talent you gave me in a positive way to help others along their way!


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 8/30/2007 8:38 PM (GMT -7)   
Hello Styx, I could literally write a book about my sinus problems! There are many studies which link Crohn's and ulcerative Colitis to sinus problems. I've even found a Journal article about septal perforation as a rare manifestation of CD. Of course, since it's rare, I just HAD to get it! my body dares to be different! LOL

I had years of chronic sinus infections and would finish an antibiotic, go back for a follow up and be infected again. I was very reluctant to have surgery, but I eventually gave in. To be honest, if I had known that I had CD, I probably would have put off the surgery. Too bad I wasn't yet Dx.

The surgery was a disaster. My sinus membranes were so friable from years of chronic inflammatin that I had uncontrollable bleeding. My septum literally fell apart and my quickie surgery took 4 hours and left me in the hospital for a week with a balloon in my sinus to keep enough pressure to stop the bleeding. My eyes were swollen shut and I was purple from above my eyebrow to down under my chin. I had so much swelling down into my throat that I was terrified that I'd need to be intubated to keep my airway open. It was the worst week of my life.

I needed two more surgeries to try and fix problems created by the first one. Then I ended up with a pseudamonas infection that required IV antibiotics through a PICC line for 12 weeks. Fun, fun, fun!

The end result was that I just traded one set of problems for another.

Now, I am left with dead mucous membranes. The snot (for lack of a better word) gets to the dead, dry area and dries up. This is the perfect scenario for infections to grow. Now add in some Humira and I have a serious sinus problem.

I had my 3 surgeries in 1998 and soon afterward threw out all the stupid steroid sprays and everything else they gave me. I found that i would only get rebound sinus headaches from that stuff and that I was much better off using saline irrigation. Eventually, I got a new ENT and he recommnded a concoction of saline, baking soda and Bactroban cream. I was able to avoid antibiotics for a sinus infection for years, until I started Humira and slacked off on the sprays. Silly me. Now I'm back on track and even though I've been injection Humira every week, I've avoided an infection for 3 months.

I hope that you can find whatever regimen you need to get these infections under control. If you have any questions about my regimen, feel free to email me. I'll be away for a few days and won't be around the boards, but I will be checking my email.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 8/30/2007 9:12 PM (GMT -7)   
Wow. Guys I am so glad that I started this thread!! Every time I search for sinusitis and Crohn's I come up with nothing on google!! I feel so relieved just knowing that there are others going through a similar experience. As I said, my sinus symptoms have been around since I was born, and have almost always been worse than my GI symptoms (knock on wood).

Keah, DEFINITELY expect an email. I think that the only thing that has helped me thus far is an antibiotic wash, but I can't find a doctor to prescribe it for me here (I just moved) and my doctor at home is out of town!! I need to know what the proportions are of what you are using...

Thanks so much guys.
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 8/30/2007 9:38 PM (GMT -7)   
Ok but just another side note... I don't get typical sinus infections. In fact, when observed, not a single doctor has seen any sign of an infection. My nose is completely open, I'm not stuffy, and I don't get headaches (so long as I am using nasal steroids). But the Post nasal drip remains.

But the only way I have gotten rid of the PND is with an antibiotic!! And I have to take very strong doses of antibiotics too. Strange problem isn't it? Anyway, I will try yall suggestions and see if it works.

If anyone has the proportions/ingredients for a sinus wash, please let me know!!!
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 8/31/2007 3:36 AM (GMT -7)   
My bet is the strong antibiotics are also helping keep the CD under control. I'm not awake yet since I can't have coffee because of tests this morning. Do you know if your CD is a mild to moderate case? Keah sounds like she can offer excellent advice...follow up with her! I'm keeping her post as well since I'm a Humira user. Good luck Styx...sounds like you're caught in between a rock & a hard place. Just for future reference...you'll learn more on this site about your CD than ANY WHERE ELSE!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Remicade, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain.  Lactose Intolerant?
 
 
Attitude: When I stand before G-D at the end of my life, I want to be able to say; I used every talent you gave me in a positive way to help others along their way!


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 8/31/2007 11:58 AM (GMT -7)   
My CD is certainly mild to moderate... but the part that worries me is that it seems very progressive. I've hardly noticed it for the past 5 years, until this past year. That being said, I am on no medication for Crohn's and doing so-so.

I just went to the nurse practioner of the best ENT in Seattle; however she was no light bulb. Still waiting to see the ENT b/c he is apparently the jesus of all ENT's and loves cases like mine. I have to wait a month though eek!!
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


Helliewellie
Regular Member


Date Joined Jun 2007
Total Posts : 27
   Posted 8/31/2007 12:16 PM (GMT -7)   
I have sufered from sinus problems nearly all my life. But not until the last 10years has it been a real problem. DX with crohns 20years ago, have had bad sinus for 10 years. I'd rather have runny poo and pain in  my gut, tahn a constant face and eye ache. I first had surgery for my sinus 8 years ago. Am had been great until about 18 months ago(about the same time CD came out of remission).After 18 months of doing the rounds on ALL antibotics, nasal sprays etc, I had surgery again in July. Instant relief no more pain in my face of temples. I have often wondered if there was a connection between cd and sinus. But have alway thougth it was just me. I had days when I would just stay in bed, it hurt to closes my eyes and to open them, even hurt to talk!!!!!! My children are so glad to have to have there nice mum back without headaches.
 
40yrs old - cd for 18 years. 3 resections, fissures, dilutions.
have been well for 11 years - just found out active disease in two sections
On 4000mg pentaza daily and have just started 75gm 6-mp per day.


soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 6/13/2016 6:49 PM (GMT -7)   
Hi everyone,
I haven't posted here in years…I'm not sure why. I'm back now because of sinus problems. As I sit here typing, my teeth are throbbing from sinus pressure. I finished a two week dose of antibiotics a week ago and I feel just as sick. I'd rather have major abdominal pain than sinus pain. I didn't have any problems with my sinuses until I started using Remicade. I stopped Remicade after 4 years and 20 sinus infections. I've been taking Imuran for a year and a half and my sinuses got a little better at first, but now they are back to being horrible! I've tried everything that everyone has listed here, but nothing helps. I'm so defeated. I've battled CD for almost 32 years and this is the first time that's it's really gotten to me. It's just endless. I'm not sure what else to do.

MeByTheSea
Regular Member


Date Joined Jul 2015
Total Posts : 100
   Posted 6/13/2016 10:37 PM (GMT -7)   
Hi, I'm so sorry you are dealing with this. I have one suggestion for the sinuses. My husband has had sinus problems since he was a kid. On antibiotics yearly and two surgeries to remove polyps. Last year I read about taking apple cider vinegar. It has to be the raw unpasteurized kind with the "mother" in it. Not the processed stuff at the grocery store. You get it at the health food store. We like Bragg's. My husband refused to drink it so I get him the pills , also at the health food store or online. ( different brand tho). He's not into supplements but it helps him so much he never runs out. Worth a try. He hasn't had to take antibiotics since starting this. Goggle apple cider vinegar and sinuses. Hope this helps.
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