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Sinusitis & Crohn's-Trying to Learn If There is a Link. And more....

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Posted 8/20/2011 10:28 PM (GMT 0)

Feeling very sick right now, but will try to focus on writing. 

 

I have not yet been Dx with Crohn's (colonoscopy Aug. 24th), but my gut, no pun intended, is telling me that's the direction I'm headed.  I've had overactive, I guess you would say, bowels for years, but as of late, all of these new symptoms have been added.  Within the last 3 months, I've been so sick.  I mean, I have the normal fatigue, but then add on the constant trips to the bathroom, the nausea, the bloating and crampy feeling, etc.  It literally feels like my body is attacking itself in a new way everyday.  I've had the lower/mid back pain where it just feels like my spine needs to be stretched, but afraid to twist and stretch too much because it will break.  My skin is itchy, but no rash.  No, I'm not on any "Crohn's meds" because as I said I haven't been diagnosed so....

 

Now, I'm plagued once again with a sinus infection (sinusitis) and it hasn't even been but a month since my last upper respiratory/sinus infection.  I got to thinking, and saw an old post on here about the two and was just wondering if there was a link between the two because both Crohn's and sinusitis are inflammatory in nature.  When I was young, I had my tonsils removed, and my turbinates (sp) widened, my adenoids removed twice (yes, they grew back).  Anyway, I'm just so miserable right now as I haven't been well for the last 3 months.  I feel sick because of all the mucous draining down into my stomach.  Doc put me on Bactrum because it's easy on the stomach and they use it to treat travler's D.  That was just yesterday so I'm hoping that it will knock it out, but from what I've read elsewhere, people with Crohn's tend to struggle with sinusitis a lot and for long periods of time, AND need strong antibiotics.  But, you guessed it, when I have the antibiotics, I'm in for a day or so of 15+ trips to the comode and then my anal cavity becomes so inflamed that I cannot even pass the watery stuff.   

 

I'm so new to this and so scared.  I guess, I just need to hear some news from other folks.   I've lived in denial for years over my depression issues and now that I finally started to piece my life back together, I am hit with this new journey (possibly).  I've attacked myself for so many years mentally and now I'm like great- I think my body hates me, and wants to attack itself.  Also, to add to the symptoms up top, sometimes I think I have eye inflammation, but not pain.  When I look at the computer screen, one side will be say for instance 10 inches wide and then will "taper" down to 5 inches on the other side.  Anyone else ever have this? 

 

Ok-let's get this party started.....

 

Hope to hear from ya'll soon!

Posted 8/20/2011 10:57 PM (GMT 0)
Welcome mamshea, I'm glad you posted.

I hope your colonoscopy next week gives you some solid answers.

Crohn's can indeed occur anywhere from the throat to the tush, so there you go.

I have recently started doing sinus lavage to help keep my sinus as clear as possible. I use a saline solution in the shower - it's similar to a neti pot. One side of my face is chronically stopped up, the other is not. I don't get sinusitus, but I am trying to keep things as clear as I can because I have tinnitus and asthma. The sinus lavage doesn't hurt anything, and seems to help.
Posted 8/21/2011 1:05 PM (GMT 0)
 Heya,

Welcome.

Won't bore you with my crohns details, it would all sound like a parrot in you room anyway, but I will comment on your post :)

I recently had my bloodtests come back with low IgG levels which are part of your antibodies, immunoglobulin G.

When I was researching it, I found all sorts of links to IgG defieciencies and the syptom check list contained a list of respitory and sinus issues.

This isnt to say that you couldn't be having those issues without having low IgG counts, but it couldn't hurt while talking to your GI about your posible diagnosis to request he runs the Immunoglobulin blood test as well.

Anyway, just thought it odd, I was just looking up that, in relation to my crohns and saw all those respitory symptoms.

Best of Luck, Talk to your GI and gi about your intestinal issues as well, get better, or as better as you can soon :)

Thanks Jon

Posted 8/21/2011 1:40 PM (GMT 0)
Thanks Jon,

I will keep that in mind. I have no idea what the IgG really is even after your brief explanation, but I will research it so I know what to ask my gi doc. Funny, I'm kinda nervous, as I've only met my gi once (to explain my symptoms) and right away I'm going in for the colonoscopy. I guess that's a good thing though because it may prove he's proactive rather than just a doc you bounce your info on and off to. Hope he proves to be a good doc. Guess we will find out!

Thanks for the info!
Posted 8/21/2011 1:54 PM (GMT 0)
So Jon, I looked it up and VERY interesting information. Yes, I've had ear infections and respiratory infections out the ying yang. I'm so happy I stopped smoking back in Feb. or else I literally think I would be dying right now. I actually told the doc at urgent care that it made no sense that since I stopped smoking, all these infections have come on. Funny that the medical field doesn't clue you in on this????

So, what is the treatment for this though?

Will my gi doc be able to help with this or do I need to see an ENT?
Posted 8/21/2011 2:27 PM (GMT 0)
Heya,

It's my 11'th year with Crohns, I hated all the procedures, colonoscopy, sygmodoscopy, endoscopy, endless blood tests...blah blah blah.

Unfortunatley, or fortunatley, however you look at having these procedures done, they may find the smoking gun, or several smoking guns, or nothing.

Either way, the procedures appear to be needed, in the early years, later, I found that I could differentiate between pain levels and know I didn't need more procedures for certain flares.

"Go Lightly" my ass, theres a joke there somewhere, nice (sarcasm) prep for colonoscopy.

Anyway, more to your IgG question.....

 

Hell if I know, My GI has no idea why my levels are dropping, I posted a link a day back with all me blood test levels for IgG asking if anyone else had thse low levels to as a part of cohns.

After further researching I also found some links that showed continued use of CSS steroids, Prednisone, etc, these can lower you IgG levels.

I don't believe you said you were on any medications currently, so that seems unlikley in your case.

Although when reading online about possible fixing low levels, it said stopping CSS steroids may return IgG levels to normal.

Sadly there is so much they (the entire medical system) don't know about this disease, they can't really treat it effectivley. as evidenced here on these boards.

That being said there are also stories of people who have gone into long remissions with the right medications and diet.

As with all things, you can bring them up with your next GI appointment, my best advice when having these issues is to make a small list of your complaints on paper, bring it to the appointment, use them like bullet points, make sure you get as much out of an appointment as possible, cause if you have to make another appointment later, well we all know that could take days to a month depending on your health care system.

As for treatment, well seeing as my doctor is baffled, his only suggestion was to retest every 2 weeks, which is fine with me. So without him knowing what is causing it, then he can't prescribe a treatment. How important can antibodies be anyway right, I meant hey only fight bacterial infections in your body,I mean without them you might die from infection.......oh wait, that does make them kinda important eh...I didn't meant hat to scare you, just irony and humor that Doctors don't seem to think certain things are important, when all the reasearch you've done says it is.

So one wonders, is internet research always credible, is your doctors knowledge of your conditions always credible. I really loathe having to be my own doctor all the time, only to go in with all my research and have my Dotor say, "I disagree" end of story.

So go get tested, try and relax, I know that aint easy, I'm living proof, woke up at 4 am, been in and out of the bathroom for 3 hours and coming here for therapy.

But the truth is, I keeep my Doctor in-line sorta, I make him keep blood testing me when I get sick, and every time I get these wonky test results, which could mean nothing or something, yeah, that comes straight from doctors not me. Seriously these guys get paid to dole out wonderous tid-bits of advice like that.

The key is to breathe, relax, your going to get through this and find the answers, just keep on your Docs, speak your voice and make sure your heard, if you don't like what one Gi says, or even the GI themselves, see a new one.

Hrm got a little carried away there.

Jon

 

Posted 8/21/2011 2:42 PM (GMT 0)
Hi Mamshea,

I am in a similar situation as you as I have been diagnosed with "probable" Crohn's after testing positive for multiple markers/antibodies that are typically associated with the disease. I am waiting to find out the results from my small capsule endoscopy which I had last week.

Your post is interesting as I have also had multiple chronic sinus infections in the past several years. I have had two sinus surgeries already, and I am only 25 years old! I would suggest you get another opinion from a rheumatologist just to rule out other autoimmune issues. I have recently been seeing a rheumatolofist who suspects I may have Churg-Strauss, which causes similar sinus issues and often GI issues as well. Millions of people have sinusitis, however, so it does NOT mean you have Churg-Strauss or a related autoimmune disorder. Hang in there!
Posted 8/21/2011 5:16 PM (GMT 0)
Will keep it all in mind Julian. I always feel so guilty, like I deserve a disease because of the way I think or stuff like that. I mean, obviously I don't want Crohn's, but at this point I just want to be told WHAT I have because something is not right with my body.

Good luck with your test results!! I forget, what does the endoscopy measure (small bowel, esophogus?)

I don't know if I'm going to need more than one test because I feel like whatever is going on wants to attack my whole body. From the neck down to the rectum. Every once in a while I'll have really bad pain in my knee, but then it goes away (within the same day usually), my spine is tender to the touch and hurts, plus the gastro stuff, and then the rectum issues. I'm just tired of it. Plus I was diagnosed with major depression with psychosis, and borderline personality disorder (in 2004) so I already have mental things going on. I keep telling myself to push and push, keep going, but I have basically become my enemy and don't want to hear myself anymore because I'm so tired of it.

Ahh, sorry to hit ya'll with the downer stuff but I lost all my supposed friends years ago to depression so this is my only outlet.
Posted 8/21/2011 5:23 PM (GMT 0)
It's odd how similar our stories are mamashea.

I was diagnosed with panic disorder and major depression in 2006, and have been prescribed lamictal which I have been taking ever since. I am concerned (perhaps overly) with my health constantly. The past few months trying to figure out what is wrong with my GI has really taken its toll on me mentally. For instance, today I have been in my bed all day thinking about what is wrong! I have had dark stools for a few days and I am fearing that I'm bleeding somewhere in my GI. I never know when to run to the doctor or not. They diagnosed me with IBS several years ago but now are starting to consider that it is IBD given that  my blood counts were off. We have what we have, so hopefully we will achieve the correct diagnosis soon. I will say a prayer for you. Best of luck and I hope it's just a benign, treatable condition you have.

Posted 8/21/2011 5:54 PM (GMT 0)
Wow-never knew!

I have been on resperidal for a while now. They tried many other anti-psychotics on me, but they all had horrible side effects that my body could not tolerate so.....I also take Effexor. I agree, I am overly concerned with my health as well. I don't know what that is coming from expect that I am OCD in nature (not the...I need to clean my hands 50x a day kind though) Things have to be my way or I get very upset, my thoughts are very OCD (hard to break patterns), etc. I mean, I went from being depressed to the point of numerous suicidal attempts and sleeping all the time, losing jobs, etc. to working two part-time jobs, taking care of a newborn, and so forth. When all I did was sleep, all I did was gain weight and didn't give two craps about my health. I always feel that the worry I have over my health causes something to go wrong. I mean, i don't get all upset over it (usually), but just seem to be obsessed by it. I'm now overly concerned about my diabetes, and cholesterol, I find myself researchng every kind of eating habit there is, etc. I mean, I guess the semi-obsession is somewhat good though because I brought my A1C down from 7.9 to 6.4 (diabetes) and triglycerides from 200 down to 154...also, quit smoking back in February. I guess the OCD is just who I am and I've got to learn how to deal with it.

Sorry guys, I know this is Crohn's forum, but I'm sure we all have more than one ailment.

If you ever wanna chat through email Julian, just let me know. I am only 31 so I know the young age thing all too well.

My first post on here and someone suggested the IBS, but my gi doc doesn't think that's it, nor do I because my symptoms don't line up and also, I don't have relief to my tummy or rectum when I'm having a flare. In IBS, you can have the bloating and the constipation or diarhhea, but you will start to feel better once you have gone to the bathroom. No so luck when I'm feeling bad. I can use the bathroom all day long and usually get worse each time so......

Anyway, we can chat more if you wanna. I'm becoming depressed reading these forums so much these past 2 days that I think my body is telling me to get off of here.

Thanks for the prayers! I hope your outcome is favorable as well and you have great doctors looking after you.
Posted 8/21/2011 6:06 PM (GMT 0)
I have sinusitis, GERD and a UC diagnosis. I don't take antibiotics for the sinusitis, mine's not an infection, I had a CAT scan to check. I use nasal spray and it helps quite a bit.
Posted 8/21/2011 6:14 PM (GMT 0)
Hmmm, so much to learn. Intersting info.....I don't know how good my insurance is so I don't know how/who to get to perform a CAT scan to check for that. So, what causes yours? I'm not trying to sound dumb, just don't know.....

If it's not an infection- are you saying that it's inflammatory related? Thanks if you can clear that up a bit.....

I've been taking Bactrim, and bought a humidifier. Been trying to get plenty of fluids down, and am feeling much better than when it first came on. Now, it feels as though it is moving to my ears. If I have to itch my ear, I feel pain.
Posted 8/21/2011 10:53 PM (GMT 0)
I am not sure what causes it, it may be histamines in the air that cause me to be inflamed. I use nasonex or nasalcort or patanse. Sometimes I use a combo. It usually helps. Some days are worse than others, some days I don't need spray at all... I have a lot of ear itching too but I can never scratch it because it's too deep inside the ear canal. It's almost in my throat.

I think a CAT scan would be helpful to determine the source of the sinus issues. Mine were clear in the scan. You can imagine my shock when I saw the clear sinuses while I was sitting in the chair with 95% of my nasal passages blocked! I guess it's a good thing because I didn't have to take unnecessary antibiotics and upset my UC. Have you ever tried nasonex or similar? If it works, it's probably not an infection, it's just inflammatory/allergy related.

If you have bad insurance, there is a $15 coupon on nasonex's site that is good for 6 months. I've been using it and it brings my copay down to $5.

Posted 8/21/2011 11:10 PM (GMT 0)
I have good insurance regarding meds, just not good for anything else...or I'm unsure as my colonoscopy is going to be my first "adult" procedure. I've been lucky most of my life to be pretty healthy until recently. I find myself plagued by if I brought this on myself. Guess it's guilt....

Either I got enough rest and brought my sinusitis down that way or the Bactrim has helped and is wiping it out. Either way I'm feeling better than 3 days ago. Last time, a month ago when I had some sort of infection, my throat was so swollen and hurting they gave me litocaine to bring it down. I've never had anything like that.

Thanks for the info....I will see if I can get a CAT scan of the sinuses....maybe go see an ENT.
Posted 8/22/2011 4:49 AM (GMT 0)
i've been having a lot of sinus issues over the past year- i hack up rediculously think gook all of the time. i've been on antibiotics, nose sprays, inhalers, etc...nothing seems to work for extended periods...i have no clue if its related to crohn's but it's definitely something i deal with
Posted 8/22/2011 10:35 AM (GMT 0)
all things to consider. All I know is that when I started feeling really sick ang got all of these gastro symptoms, the sinus stuff started not too long after. Thinking back, I've never had a problem with seasonal allergies, but I was wondering like you, mtgman, why I was hacking crap up all day long. I hadn't hacked since I stopped smoking. Now I've had two respiratory infections within one month.

I'm going to write this down in my journal to talk to my doc about. I pray my gi doc is good because I am already on disability from other conditions, so my medicare plan, i'm sure only has this one GI doc to choose from!
Posted 8/23/2011 12:30 PM (GMT 0)
I was always fighting sinus infections and headaches.  My gi suggested that I take a zrytec every night.  I have been doing that for about 4 years now and I have not had a sinus infection since.  I am on remicade and imuran. 
Posted 8/29/2011 11:52 PM (GMT 0)
Oh yes, I believe there is a link! I suffer with sinusitis, and I'm currently dealing with it right now. about 18 months ago, I had a sinus infection off and on for 11 months; gross, thick, mucus draining down the back of your throat making it raw and your voice scratchy; my nose was red and inside and out there were thick crusts that formed from the dripping and blowing of my nose so often and stretched to midway between my upper lip and nostrils. I couldn't breathe at all at night. Saw an ENT, had a nasal scope with camera through my nose and out my mouth; found a lot of bleeding and excoriated tissue. A combination of things helped me knock it out, like I said it wasn't easy!!! If you haven't been doing any of these things, I recommend trying them; also, check out an ENT to get the antibiotics that will actually work for you and not screw up your gut! I'll give you the low-down on what I did; I'm also an RN so I have medical background as well, (so you don't think I'm just a lunatic throwing out suggestions!):

1. Avelox-antibiotic-2  10 day cycles of this med are going to be needed to knock out a persistent infection; it isn't a cheap med, so I hope you have prescription drug coverage!

2. Neti pot, use in AM and PM, then blow nose!

3. Fluticasone, (Flonase)-prescription needed---use after the Neti pot flush

4. make sure to take a probiotic while you are on an antibiotic, thrush and yeast infections will hit you hard!!!!

5. If after 2 cycles of the med it feels like it's not done, ask the doc for one more round...

All this is based on having a knowledgable doc with the understanding that infections are harder to knock out in ppl immuno-compromised like Crohn's peeps.

Hope this helps! I suffered so long and tried so many different antibiotics, I would hate for you to have to go through what i did for a year or longer without relief.

Let me know what happens!!!

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