Some years back I developed a chronic wet cough that was tricky to diagnose, and it tormented me for about two years. I even tried allergy shots to control it, but they didn’t help, though I gave them plenty of time to work. It was finally diagnosed as asthma, using an elaborate test called a methacholine challenge (that might be your “bong” test). This was for me the third leg of a three-condition syndrome called Samter’s Triad, or Aspirin Exacerbated Respiratory Disease, which includes asthma, sinus issues/nasal polyps, and aspirin hypersensitivity. I tried a wide variety of inhaled steroids, including Symbicort, but the first one that actually helped is one called Alvesco. I’ve been on Alvesco for 4 or 5 years now with good results, though my insurance company hates it and hassles me about it every year. My understanding is that the various inhalers have different particle sizes, and this can affect where in the respiratory tract they settle. Good luck finding a solution!

Scott-

Thanks for the advice and the tip on Alvesco. I have been on 3 inhalers, the first one was Pulmicort, I can’t recall the name of the second and the 3rd one I am on now is Symbicort which my pulmonologist mentioned as being more “powerful” than the other 2. He seems to think it will take time. He also mentioned the possibility of asthma but grouped asthma within the category of inflammatory airway diseases. To me it’s like the difference between Crohn’s and pouchitis, I don’t really care what he calls it as long we can find a treatment that works. It might very well be asthma, although my cough is mostly dry and mostly comes in bursts when I try and talk. Sometimes, at the end of a long day of being on the phone with clients and managing their issues, I will come home and be coughing in such bursts that my head hurts. 

I also had a problem with a cough.  I went for evert type of test and they could not diagnose the problem.  I went to Mt.  Sinai to a lung Dr. that my gastro Dr. Itzkowitze recommended,  with all tests that I took where I live and he diagnosed me in 30 minutes after going thru all my test results and MRI.  My diagnosis is bronchiectasis  His name Dr. DePalo Great Doctor

Grace,

Were you coughing up a lot of phlegm? My cough is mostly dry.

How is the bronchiectasis being treated?

You say a “lung doctor”, do you mean a pulmonologist?

Ironically I had my colectomy at Mt. Sinai, many many years ago.

Yes Pulmonologist .  Yes I had coughing with phlegm.  I went to a pulmonologist on Long Island.  He could not diagnose me.  I called my Gastro from Mt Sinai Dr Itzkowitz ,  He had me make an appointment with Dr. DePalo Mt Sinai. I brought all my paper work from all testing I did on Long Island.  He is the one that diagnosed me.  He recommended  I use a plastic breathing appliance called Aerobika.  It helps but I also have acid reflux.  You can look it up to see what it looks like.   He is an excellent  pulmonologist.  I have had several things with my lungs and he was always spot on with diagnosis.  

CT  another question  Who did your surgery at Mt Sinai? and how long ago.  I had mine 2010

CT I just went back all texts  I see 1972   Wow that is a long time ago and child at that time.   I wish you luck with everything I hope you find out what it is.  I had mine as an adult I can't even imagine having the procedure done at that age. 

GraceB posted:

CT  another question  Who did your surgery at Mt Sinai? and how long ago.  I had mine 2010

My surgery was done in 1992 by Dr. Irwin Gelernt, assisted by Dr. Steven Gorfine. At that time Dr. Gelernt was the best colorectal surgeon in the USA and I believe he did the first K pouch surgery in the USA. He studied under and was mentored by Dr. Nils Kock, for whom the K pouch is named. Dr. Gelernt is no longer with us as he passed away in 1996. Dr. Gorfine, who along with Dr. Gelernt probably performed more J Pouch surgeries than any surgeon in the USA from 1988-1993, is still with Manhattan Surgical Associates, but my guess is he is semi retired from surgery and teaching more at the medical school. He would be a very good guy to learn from.

Although it’s been 27 years I can still remember Dr. Gelernt like it was yesterday. He had a presence unlike any doctor I ever met. One of those people you meet in life who speaks with the voice of God- every word that came out of his mouth I accepted as wisdom on a very high level. He instilled great confidence and was highly revered by patients and fellow doctors. He basically ran the Mt. Sinai GI surgery department at that time, was top dog surgeon there and in the USA.

That's a long time.  Still to have UC at such a young age.  I was almost 50 when I was diagnosed.  I just regret not knowing how serious this disease is. I was diagnosed with UC with just a 1/4 of my colon. I never heard or knew anyone with UC.  within 7 months being treated with a gastro on Long Island my colon was completely diseased.   2 months before that diagnosis I started searching UC and that is when Mt Sinai came to me.  I made appt but it was actually to late ,  My daughter made a phone call to Mt Sinai to see if they could see me sooner and I went the following week after being hospitalized on Long Island.  So I actually feel like they saved my life.  I don't fool around any more lol  I call as soon as I feel anything is not right.  Good luck to you and hope that you feel better.

GraceB,

I actually got a copy of my CT scan and it confirmed "mild bronchiectasis."  More on it here but the NIH does say Crohn's Disease predisposes one to it:

https://www.nhlbi.nih.gov/heal...opics/bronchiectasis

I took a look at the Aerobika breathing appliance and it seems more geared towards resolving mucus issues.  My issues are primarily coughing and it is mostly dry (occasionally I cough up small amounts of mucus but it's mostly dry).  So I am continuing with Symbicort inhaler for now.

CT,

I'm curious if you ever took Uceris/Budesonide at any point. I have pretty much the same symptoms for about three years now and it started about two weeks after starting on Uceris. Every doctor I've seen, as well as the physicians on this board, all hold hands and claim that Budesonide is not absorbed systemically and therefore can't be the cause of my problem--it's just a wacky, wacky coincidence. Pay no mind to the list of side effects for Budesonide which specifically list cough as a side effect.

Budesonide has lower systemic absorption than other steroids, partly because it’s processed pretty well by the liver (after absorption by the gut) before it spreads to the rest of the body. Its systemic effects are certainly not zero, and all of the steroid side effects are possible, though less common (at comparable doses) than other steroids.

Scott,

I wonder is the absorption rate testing was done on people with intact colons or actual J-Pouchers.

I just read Scott's page.  I am thinking that Dr. DePalo wanted me to use the Aerobika because I have PSC of the liver.  I haven't been coughing much but I do have a problem with my lungs.  I did have asperated pneumonia last year. So I have to be careful because of my immune system as most of us do.  All these things we get from Ulcerative Colitis. I have to say that I have been taking CBD oil from Hemp and I haven't been getting to much pain from eating.  I take one about 2 hours before I go to bed. It seems to help with my digestive pain. Has anyone else used the oil?

Rusty, the testing would surely have been done on people with unaltered GI tracts, but the colon doesn’t have much to do with it. Even if it did, loss of the colon would more likely reduce absorption than otherwise. In any case, budesonide goes to the liver first, via the portal circulation, and most of it is inactivated there. It nevertheless is a possible cause of your side effect, just not a very likely one.

Rusty,

I did take Budesonide in the form of Entocort back in 2012 or so, but that was long before this cough arose.  I should note that Budesonide is the active steroid ingredient in the Symbicort inhaler I am using now, but I did not start using it until after having the cough for 6 months.  The cough started in April with a bout of pneumonia.  Between 2012 and April 2019, I had no such issues as I am having now. As I mentioned above, my CT Scan shows that I have "mild bronchiechtasis" ( same diagnosis as GraceB), which is an inflammatory airway disease.  The NIH article suggests it's a chronic condition (just like IBD), although my pulmonologist thinks that my symptoms will get better with time and the use of the inhaler. At the moment, however, it is very difficult for me to have a conversation without bursts of coughing.  Talking seems to be the primary aggravating factor.

Honestly, so far, I do not think the Symbicort is working.  The pulmonologist has urged me to give it time and keep using it.  I did think at one point that it was making things worse, but it seems like I am having some really bad days where the cough is bad.  And I just don't see any signs of progression.  The ENT I saw in June was very confident that another inhaler called Pulmicort would work, but it did not do anything either.  The symptoms seem unabated over time, although they have waxed and waned depending on the day.

Rusty,

What is the current diagnosis for the cause of the cough?

Just an update- yesterday after speaking to both my pulmonologist and my PCP, a joint decision was made to stop my steroid inhaler for 10 days. Both said that in a certain subset of patients the inhalers can actually making coughing worse.

My pulmonologist said if things are not better in 10 days, he will do a “bronchoscopy”. Have any of you guys had a bronchoscopy? I assume they will snake a camera tube down my trachea and into my lungs. I am told it’s done under anesthesia in a hospital. If things don’t improve I am all for it.

On another note, with the approval of my pulmonologist and on the theory that it can’t hurt, I bought a vaporizer. Between the inhaler and the forced air heating system in my condo, I am thinking my airways might also be inadequately hydrated. I have used the vaporizer with Vicks Vapo Steam (basically Camphor) the last few nights and will continue to use it to try and obtain some relief.

I hope you feel better CT.  I think we all know what you are going thru.  It seems like it never ends.  I am sure they will get to the source of what is going on .  Feel Better

So... I have had allergies since I was 3 (and shots). Diagnosed with mild asthma when I was 16, and now have it full blown. Last couple years I got bronchitis at least once (sometimes twice) a year. Last year my allergist was pretty convinced I had pneumonia in one lung. 3-4 months and 3 antibiotics to clear it up. He checked my pneumococcal antibodies and they were extremely low, so he gave me the vaccine. My primary gave me the other one (the kid vaccine) too since it is a recommendation to have both within 6 months.

As far as maintenance he moved me from Alvesco to Dulera (higher dose), tried me on Spiriva at the same time, gave me a round of prednisone if I was really having trouble, gave me albuterol for a nebulizer (in addition to my ProAir albuterol inhaler), started me on Singulair, and we stopped my sulfasalazine (for arthritis now; rare side effect is lung disease). He also convinced me (finally) that reflux was a contributing issue (non-acid reflux, for the most part). Prilosec daily + a lot of tums for after eating.

The single thing, out of the kitchen sink he threw at me, that helped most - was Singulair. It is not an NSAID, and non-steroidal. It blocks an inflammatory molecule in the fat cells that contributes to inflammation.

Steve

Thanks for the tip Steve. I will mention Singulair when I see the pulmonologist next November 22. He said he would do a bronchoscopy if I am not better at that time. None of the treatments I have received have worked. BTW, I did get the pneumonia vaccine, Prevnar, last week. I am told I am good for another 9 years on that. Of course, it doesn’t stop all potential strains of pneumonia.

So I wanted to finally close the loop on this thread. All the inhalers I was given did not work, but I was finally given 2 nasal sprays that did work- Fluticasone Propionate Nasal Spray, which is  a steroid anti-inflammatory, and Azelastine HC1 Nasal Spray, which is an antihistamine. I take 1 spray of each, up each nostril, morning and night.

My final diagnosis from the pulmonologist is non allergic chronic rhinitis, although I have only had it since April 2019.

If I do not take the sprays I get a little coughy.  If I take them I am pretty good.

i have a chronic productive cough that about half my doctors have said is related to crohn's and the rest say it isn't.  i use a budesonide nasal rinse that helps a lot, but hasn't eliminated it.  inhalers don't help at all.  during my last seton surgery my surgeon said i need to get it taken care of becuase i coughed during the whole operation, but nothing really seems to work.  diagnose is chronic middle airway obstruction and sinus drainage.  i've had 6 sinus surgeries to widen the sinus opening, and they helped for about a week or two.  I'm convinced it's related to crohn's--but that's just because crohn's is an evil, awful disease and I blame everything on it.

during the time of covid, it's especially hard having a chronic cough--everyone is afraid of me!

good luck.  i hope you find a solution.

It's not Crohn's, its autoimmune disorders which causes both the inflammatory bowel disease and the inflammatory airway disease.  Like you I have had sinus surgery.  I find that the steroid nasal spray helps, but like you, doesn't eliminate the issue.  Anyway, in my case they are calling it non allergic chronic rhinitis, and it seems to be mostly under control at this point.