Breathing problems

[co2]

Hey, I'm new to this forum and I really enjoy it now that I have found it. It's really funny to scroll down the list of posts and see all the things that have gone through my head written down by other people suffering the same problems. It's nice to know there are others out there i guess.
Anyways, heres the situation. I was diagnosed in '99 with crohn's and have had what I would consider a mild case. I have been hospitalized once for a week and have never had surgeries. For the last two years I've been lucky, so to speak. I haven't had health insurance so I have been on ZERO meds! It's been ok with zero to no pain, just watching what I eat. Around the holidays I started flaring and then the last week or so I've seen my gastro and been put back on prednisone temporarily and Imuran for the long haul. It worked before so fingers crossed.
Getting to the point, I have had breathing problems lately. It feels like I can't get a deep enough breathe occasionally. Sometimes I make myself yawn and that helps, but for the most part I just have to take giant breathes. I have been dealing with this for a month or so, maybe longer and noticed that at the height of my prednisone, when I was on the most before tapering, I didnt feel this at all. Am I feeling a crohn's symptom thats new to me or just general anxiety?

 

[MADiMarc]

Hi.
Anytime breathing is involved, my immediate response is: go to the doctor now. It could be something as simple as muscle strain, it may be something very serious. Please go to the doctor.
No, I never had that while on pred or when tapering.
Good luck,
Michele

 

[co2]

I was having this issue before I was put on any meds so I chalked it up to anxiety, but at my gastro visit he asked me if I was experiencing any shortness of breathe and I was like, "yeah!" I explained it to him and he sort of shrugged it off as something not to worry about. It comes and goes throughout the day so I was just gonna see if it went away on it's own. Without insurance, I cannot afford to go in for something that may be in my mind.

 

[Rebecca85]

I'm wondering if it could be a symptom of anaemia or something? Did you get your bloods checked at your visit?

 

[ruthyp]

i am constantly sighing, and have to take in REALLY deep breaths, people even say "hey leave some oxygen in the room for us!"

This is what i was told, that the nerves in you intestines are on the same nerve line as your lungs, so when you are flared up it affects the lungs aswell.

I was in hospital for a month and met many other crohns sufferers, they all said they had trouble with breathing too. so my opinion is that it is normal for crohns sufferers to have breathing problems. If your worried, tell your GP, i had a special lung test done called a VQ test, it shows how much oxygen you absorb and if your lung function is normal. That came back normal so i knew it really was the nerve problem.

Best to get checked out though to make sure there is no other problem.
hope this helps!!

 

[rygon]

Yeh I get it sometimes as well (allthough i am asthmatic). I dont feel out of breath but I dont feel like im getting lungful of air. I dont see it as serious and my inhaler works a little for it, but I think it was also a sign of me getting slightly anaemic. My iron count has gone down quite a bit more now and found any exercise makes me panting and dizzy, so most prob worth checking up on that just in case

 

[Guest]

i've had this exact same thing, in fact i'm sure i've posted about it here somewhere... like you, i simply cannot take a deep breath at these times, and try to yawn to achieve a deeper intake...

for me, i think i go through phases when this happens - it does seem to go hand in hand with any kind of upper stomach upset, like indigestion, acid, and i also think the diaphragm has something to do with it, like it's in spasm and not relaxed...

it might be worth asking your doctor if you can try a mild antispasmodic and see if it helps at all.

 

[Mountaingem]

Please go to the doctor. I actually had Crohn's attack my lungs, when for years the doctors thought what I was describing was asthma. When I had surgery the doctors saw the Crohn's on the outside of my lungs; biopsy confirmed it.

They treat it the same way as asthma but when I have symptoms it's an important clue to what else might be starting.

Also, we take some scary drugs and it never hurts to make sure everything checks out.

I don't mean to scare anyone; just sharing my experience. Breathing is nothing to mess with

 

[becca38]

Out of air

Wow! I have had Crohns for 22 years and cronic breathing issues. I do think that it is anemia related. For the most part I tell docs that I always feel short of breath. They check my absorbtion of oxygen and that appears normal but my breath test has almost no air. They say asthma but I have not had luck with inhalers so I am walking winded. I am a very active person and I have gotten used to it, however I think that I need to act. These posts are inspiring me to get a little more proactive with my Doc. Thx

 

[Mountaingem]

FYI the doctors prescribe Advair for me; it's a small fortune but it helps so much it's worth it. Also see if the doctor might prescribe a nebulizer; here in California they outlawed aerosoles in inhales so none of them work for me anymore, either.

 

[co2]

Thanks for the advice everyone. I haven't had anemia problems in years so I didnt think of that, but I do have all the symptoms so maybe ill go check that out.

 

[Minxy]

i've had this exact same thing, in fact i'm sure i've posted about it here somewhere... like you, i simply cannot take a deep breath at these times, and try to yawn to achieve a deeper intake...

.......also think the diaphragm has something to do with it, like it's in spasm and not relaxed...

I am very interested to read the posts about breathing disorders and Crohn's, particularly the comment about the diaphragm being not relaxed and in spasm, as I have had exactly the same problem for the past 5 yrs.

I was diagnosed with mild Crohn's over 30 yrs ago, and managed it with diet until 5 yrs ago when symptoms suddenly got much worse, including the breathing disorder.

I do have asthma, and was recently diagnosed with COPD. I am told my lung function is very poor, but frankly I feel the data from the extensive lung function tests I have had done is being skewed because I am unable to take a deep breath during any of the tests. The reason for this is the rigidity in my diaphragm, and when I try to breathe deeply my muscles go into painful spasms which spread up my chest wall, making me very breathless. I cannot voluntarily relax the muscles.

I have tried several antispasmodics, but nothing has helped, and two of them gave me severe intestinal cramps. The only thng that helps a bit is my inhaler and my nebuliser, but not enough to relax the diaphragm.

I have also tried a small dose of amytriptiline, (2.5 mls), but it made me feel very agitated and hyper, and had to be discontinued. I have even been given diazepam (2.5 mg) but it made me so tired I could not function, and eventually depressed as well.

If anyone can advise me what I might try next, that might help, I would be grateful. Or can tell me what kind of non-drug therapy might help. Does anyone find steroids have helped?

Many thanks.

Just to add that in my case it is not due to anaemia. I have had full blood counts done several times and all results are normal.

 

[TheMrs]

My pulmonologist said the inflammation gets into the way deepest part my lungs and that it's so far down that's why the inhaler doesn't really help. I have chronic cough and recurring bronchitis over the last couple years and had pneumonia last summer.

 

[silveyk]

The following is an excerpt from an online medical text per Crohn's and breathing issues:

*** A variety of conditions arise outside of the gastrointestinal tract that are associated with inflammatory bowel disease; these are termed extraintestinal manifestations of IBD. Involvement of the respiratory tract, although relatively rare, is increasingly recognized in patients with inflammatory bowel disease since the original report in 1976 of six patients with unexplained chronic purulent sputum production. These abnormalities are generally related to the underlying bowel disease, although interstitial lung disease can also be induced by administration of certain drugs, including sulfasalazine, 5-aminosalicylic acid, methotrexate, azathioprine, and infliximab.

PRIMARY RESPIRATORY INVOLVEMENT

Pulmonary complications of IBD include airway inflammation involving small and large airways, pulmonary parenchymal disease, and serositis. In one study, reporting 33 new cases and reviewing an additional 98 cases from the literature, approximately 41 percent of the patients presented with some form of airway inflammation, 27 percent with lung parenchymal involvement, and 17 percent had involvement of the pleura; an additional 15 percent had myo/pericarditis.

The pathogenesis of the pulmonary parenchymal disease and the serositis is unknown. However, the more common airway inflammatory changes have been thought to represent the same type of inflammatory changes that occur in the bowel.***

Dr. S (spouse of Crohn's sufferer)

 

[Minxy]

As my Crohn's related breathing disorder is due to muscle problems, and not to problems within the lungs, I would be grateful if anyone can tell me of a successful treatment for the muscle problems caused by Crohn's?

Thank you.

 

[ryanwmeadows]

I can't express how releived I am to find others that share this problem. My mother suffered from Crohns and I was checked when I was a child. All tests came back negetive. Abot 5 years ago I began experiencing symptoms of Crohns. I have always been terrified of doctors. I don't have health insurance, so I have very little interaction with treatment possibilities. Within the last 2 years I have been dealing with severe joint pain in my knees, migraines, psoriasis on my face and head, depression and most recently, difficulty in breathing. Now, when I expressed my breathing problems to my co-workers they start troubleshooting and it's difficult to come up with answers as my SpO2 levels are always at least 97, which is great for a 14 year smoker (recently quit for 2 months now). I'm not coughing and there is no spetum being released. It simply feels like I can't achieve full tidal breath. I feel exausted and I sometimes panic because I fear that I can't breathe, which of course makes it worse. Sometimes I have sharp pains associated with the DIB. I feel like there is a slight amount of fluid in my lungs and it moves when I grunt, but never comes up. Sitting up straight, giving my diaphram more room, helps alleviate the issue slightly and yawning does help, but the problem is always there. I am extremely active, but within the last year I have been terrified to work out due to the fear of not being able to breath. Thank you all for your posts and I hope to keep in contact. I wish everyone good healh and stay strong! oh yea..I really miss peanuts!

 

[pink&green]

My hubby is having the same issue as well, we thought his breathing issues was related to Remicade. He goes to see our family Dr on March 3, and he was going to ask for a breathing test. I will also suggest anemia I didn't think of that.

 

[carrollco]

Quick and easy check to make sure you are breathing correctly. Lay on the floor as a hard surface works best. Take a book that is relatively heavy and place it on your stomach. Take a deep breath. If your shoulders rise you are not breathing correctly and this can make you feel short of breath. The goal is to make the book rise not your shoulders. Many women have this problem because we were told to keep our stomachs pulled in. Consequently we forgot how to breathe using the diaphragm. Anxiety will also cause us to breathe that way. It is a flight or flight thing. Take a deep breath using your newly discovered diaphragm to the count of 4, breathe out to the count of 4, 4 times per day. It works, honest.

 

[GreenwichUK]

Me too - I'm waiting to see the respiratory specialist to find out what's going on

 

[Litehouse60]

I was diagnosed with Crohns 31 years ago and have had my ups and downs. Seven bowel resections, episcleritis, thyroid issues, inflammatory arthritis of back and hips, and now pulmonary Crohns. I started noticing shortness of breath with exercise about 15 or 16 months ago. I thought I was just out of shape the more I tried to walk and exercise the worse I got. My case was complicated by a paralyzed vocal cord after total body tetany due to severe calcium drop after my thyroidectomy. I had a vocal cord implant in 2012 and the shortness of breath started in 10/2013. In 6/14 I had emergency surgery to remove the implant, which was blamed for the respiratory issues. I continued to decline as soon as I was taken off prednisone or tapered below 10 mg. My pulmonary doctor keep saying that I had Reactive Airway Disease and vocal cord dysfunction. I got into severe distress recently and went to the hospital. The new partner of my pulmonologist was on call as mine was out of town. He has worked pulmonary Crohns and immediately ordered a high resolution ct scan with me lying on my stomach and back. A definite diagnosis was finally made. I am scheduled for some additional testing at Mayo Clinic and then I will return home for an infusion of Rituximab.
I highly recommend if you have respiratory symptoms that you ask for a high resolution CT scan and have it read by a pulmonologist that has seen Pulmonary Crohns. The radiologist read my scan as normal except a few small scars. I also had an echocardiogram which was read as normal by the cardiologist, but when read by 2 different pulmonologists I have pulmonary hypertension caused by the stress on my heart from the respiratory issues.
The main point I want to make is we are each responsible for our health. If you must fire doctors to get the tests and care you need do this. Interview your physicians to see how much experience they have in treating your issues.