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Has anyone suffered from a productive cough? I have had it for almost 4 years now, which started just after my first episode of enteropathic arthritis (which was 6 years after jpouch surgery). It was just after starting Sulfasalazine for the arthritis, but have since stopped these tablets, which hasn't fixed the problem. I have always had sinus problems, so ENT have given me a spray to help allergic rhinitis and have been given lots of gaviscon to see if it is acid reflux, but after almost a year, it really isn't helping!
I have the cough every morning, and I cough up green/yellow mucus and now also in an evening when I want to sleep (though think this is more from now having a sore throat from coughing so much)! X ray was clear, no bugs grew in the samples sent off and full lung function test was fine. It has resulted in becoming very depressed over the last few months, through frustration, as now effects my voice.
I posted this in a Facebook group last night and have had a few replies, with people having exactly the same symptoms, e.g. cough starting an hour after waking up. So am even more confident now that it must be linked to UC, and wondering if anyone else has any thoughts. Thanks!

Original Post

Hi there!  YES!  I had the same problem and my pulmonologist had me doing all sorts of tests, put me on inhalers, on antibiotics.  Really, nothing alleviated the symptoms and the most cumbersome part of  it was the constant productive coughing.    Otherwise, there were no other symptoms, hence perplexing my doctor.  After a sputum test, they finally determined the diagnosis (and forgive me, I don't remember it and will post it once I find my records at home).  It is the strangest diagnosis but my pulmonologist says it is related from my UC and having an autoimmune disorder.

Strangely enough, it went away after about a year and I haven't had any issues for over four years now. 

I am so sorry you are having such a difficult time and with your arthritis, I am sure things are overall frustrating and annoying.  I will post the diagnosis tonight; not sure if it will help.  I had to reply immediately because when my doctor confirmed the diagnosis, and it being related to UC, it was shocking since I was 'cured' after having my colon removed six years prior.  I just never thought a cough could be related to our UC!  But I have learned a lot, especially on this website, so nothing surprises me anymore.  I never dreamed just how much UC affects our bodies, even when you are supposedly 'cured'.  Hang in there and this too shall pass!  Kara 

Omg... I just got one at the end of July and it's AWFUL!!!!!!! My CEA level went up too...up to 8.25. That freaked me out. I'm on inhalers Mucinex Flonase ... A Sinus bath that I do 2x a day ... I'm exhausted!!! I'm getting a CT scan of abdomen chest and breast tomorrow. I'm soooo nervous! 

Mots always something! I don't think it's related to the Jpouch tho! All my doctors said that with all the yellow/green phlegm (sorry to be so graphic) it is def an infection! Please say prayers for me that the cancer hasn't returned. I'm scheduled for an elective mastectomy in Dec. due to my history of Breast and Colon Cancer. I'm finally taking control of my life and now this... Ugh��  I'm usually very positive but I'm just exhausted��

My cough was also productive. In December I posted:

"it could also be asthma. I developed a chronic cough about 5 years ago and jumped through all kinds of diagnostic hoops. It finally turned out to be asthma behaving in an unusual way. I tried a variety of inhaled steroids until I found one (Alvesco) with my allergist's help that made the cough go away."

There are a bunch of different breathing tests. The definitive one for asthma is called a "methacholine challenge."  It's the only one that was able to make the diagnosis for me. 

The process of figuring it out can be a big deal. My CT scan revealed a mass on my kidney that had to come out. It fortunately was benign, but the darn surgery wasn't. 

Wow. I have had a really bad cough for almost 5 weeks. Chest xray normal. Pft normal. (Which I couldn't believe since I almost choked during it.) My dr's nurse swears it is allergies. But it is yellow/green/grey. I try to sleep and start coughing so much, I feel like I am about to drown. SO I take nyquil severe, and sleep sitting up. I wake up gagging, coughing so hard I sometimes pee and poo. I am about 3 months post takedown. I just got a referral to pulmonary clinic... and another chest xray. Kara please post what your diagnosis was so I can ask my doctors. I know it is not "just allergies".  

I was diagnosed with UC  Surgery 2010   Mt Sinai Hospital  I developed a cough in 2015.  I went to my md sent me for x-ray  treated me for bronchitis.  I had an annual check up by my gastro at Mt. Sinai I told him about the cough he told me to see the lung Dr.  I made an appt. on Long Island went thru every test you can think of couldn't find anything wrong but in the mean time I was coughing this dark yellowish thick sputum for about a year.  The lung Dr. told me to go back to my gastro in the city.  My gastro in the city told me to see the lung Dr. at Mt Sinai. I also have an immune deficiency from UC.  I brought all my tests and MRI they I had done on Long Island.  Within 20 minutes he diagnosed me with bronchiectasis.  He told me 20% of people with UC could end up with this lung disease.  He gave me an Aerobika  breathing apparatus to use every day.  No medication with it.  I have another apt with  the Lung Dr. next month.  I am still coughing.  The machine helps get some of the sputum up. I don't know if this helps you but it is something to ask your Dr. about.  Please let me know how you make out.    Grace

 

 

So many diagnoses... has anyone found anything that helps take away this cough? I can now say I have a "chronic cough" because it is officially 8 weeks since this cough started. I now take cough medicine with codeine because I couldn't sleep. Now at least I sleep�� I'm also on Flonase (prescription) Albuterol and I do Sinus baths with a prescription med that go us into it. Kinda like a nebulizer. I have an appt. with a Pulmonologist next week. Just another doctor added to my list of doctors... exhausting!

I am so sorry Janie and I know the last thing you need is another doctor, more tests and more medications.  I used Albuterol while I was coughing and it seemed to help me some, especially at work with sudden 'fits'.  I hope the Pulmonologist can get to the root of the issue and find some answers and relief.  Thinking of you!  Try and keep your spirits high - support is all around you! Kara

Aww thank you Kara... my spirits were high until this cough! It really came out of nowhere which is weird. I went ahead though and got the ok from my oncologist to get the flu shot. Don't think I could handle that too. I'm actually getting use to the pouch. Finding different ways to lessen the frequency. And they are. Let's all just pray for better days. I think they're right around the corner!!

All the symptoms you have described are mine, as well.  In my case a CT scan of my lungs led to the diagnosis of Bronchiectasis.  I'm sure the symptoms you all described could indicate any number of diagnoses.  You can Google "Bronchiectasis" to learn more about it.  There is also a website called BronchiectasRus.com which is very informative.  It seems as though a number of people who have Bronchiectasis also have MAC.

Thank you to everyone who commented on my question a few weeks back. I went to the pulmonary department on Friday and although i doubt their enthusiasm somewhat to fixing the problem "Ahh coughs... they keep me in a job on a Friday afternoon" They are at least doing something at last! After sharing the information from everyone on here, she has decided to try me with a brown steroid inhaler twice a day and putting me on the waiting list for a CT scan. She said that she isn't promising to cure it, but I reassured her that I am determined to find out what it is, as is having a real impact on my life! Maybe if I keep chipping away at them, I might get somewhere! I am going back in 3 months for a follow up appointment. She thinks I am too young for bronchiectasis, but I reminded her that I had/have UC and she did accept that it is associated with inflammation. So the CT scan should help find out!
The inhaler is aggravating the back of my throat, since it gets quite sore after coughing for so long, but am hoping that it will help in the long run.
I hope that anyone else trying to solve the mystery manages to have success too!

Thanks again!

Ok so ... went to a Pulmonologist and she took a culture and I was diagnosed with Bronchitis (pretty bad case) and Asthma. I am currently on Breo ( a steroid inhaler) taken once a day, Prednisone, Doxycycline, Albuterol, Flonase and Mucinex. Whew!!! Yes it's a lot of meds but I'm def feeling better! My CEA WENT DOWN A BIT ALSO. Getting biopsied for a node in my neck... Hopefully not related ����  Please keep me in your prayers, guys!  Will keep you posted ����

Janie

Jan and Kara... you guys are sooo very sweet and encouraging! Thank you so much! Had my biopsy and waiting for the results... your prayers and crossed fingers definitely help so please keep them crossed and keep me in your PRAYERS��������������������. I'll let  you know when I hear❤️

Thanks again!

Janie

Janie, I hope you are feeling better! This sounds like an awful lot handle. 

Jane, I have the EXACT same symptoms!

I have also had a productive cough with green sputum for 10 months straight now. I am now 35. Diagnosed with Crohn's at 18, but discovered it was UC and have had a romance with my pouch for 6 years until getting a horrid digestive infection while working in the South Pacific in January. Never found out what I contracted but had to go on 3 weeks of Levaquin and Flagyl to get better. The antibiotics totally leveled me. I've had sinus infections, strep since, a mild bout of pouchitis I think and generally been less than well. The only other time I have been that weak was post J Pouch surgery. I lost 20lbs and have been at 70% of my strength ever since. Now since January, every morning without fail the same thing. About an hour after rising I hack up a lung for 20-30 min to get all the thick green gunk out and then I just have traces for the remainder of the day. I had mild bronchitis the past 3 or 4 winters but it always cleared up.  Now after 10 months of going crazy trying to figure out what is wrong with my lungs I was diagnosed with mild Bronchiectasis last week and I have a bronchoscopy tomorrow to figure out the extent and if there is a lingering infection. I've jumped through every hoop imaginable at this point. 2 xrays were"normal". CT scan shows mild disease, although it took months to get a pulmo to actually look at the scan and ignore the bunk report from the imaging center. I have seen an allergist, an ENT and been going to the Pulmo all year. Ruled out acid reflux or anything else with a pouchoscopy and an upper endoscopy. I did test positive for mycibacterium avium once, so fingers crossed that is not the problem. I hear the 3 drug coctail for 1-2 years to clear that up is not pleasant. I don't know if my pouch could handle that sort of abuse. I am finally happy with my doctor at National Jewish Respiratory in NY. He feels the bronchoscopy will determine which bug I have in there (hopefully not MAC) or just UC related inflammation and can then put me on the correct course of treatment. An inhaled steroid, azythromycin or something stronger. Has anyone here taken azythromycin? I'm curious how my pouch would handle it.

Anyway, my new Pulmo says he has dozens of patients now with UC and pulmonary disease so we are not alone! Wish me luck tomorrow. I will hopefully have some answers after nearly a year of this cough. I'm not thrilled to have yet another chronic condition but hopefully with the right diagnosis it can be treated.

It's really helpful to know that other pouchers are experiencing the exact same symptoms.

Jane I am also really curious about your enteropathic arthritis. Since about March I have been waking up most nights with terrible aching pain in my right elbow. I have done nothing to injure the joint that I can think of. It started after my second round of Levaquin this year.

More and more it seems like the extra-intestinal symptoms are just our UC targeting other body parts. I'm still so glad for my surgery! I'm actually going to ask my pulmo if surgery is effective for Bronchiectasis in UC patients. 

-Joe

Hi Joe, 

Sorry to be so slow in replying... I haven't checked the forum in a while now. I have got my CT scan tomorrow, so hopefully I will know more after that. I have been sent to it by the pulmonologist that I saw a few weeks ago. i told her that I suspected bronchiectasis and although she wasn't convinced, she did accept that it is linked with inflammatory conditions (hence agreeing to send me for a CT scan). I have also been given a brown steroid inhaler, which makes it much easier to cough up the stuff. One little cough, and it is out! I still seem to have the sinusitis problems though. I am going to have the allergy tests at some point, but there is quite a waiting list I believe. 

The cough started around the same time as the arthritis - so I am guessing something was going on with my body at that time! It started in my one knee and I was unable to walk for a couple of months and then spread to a toe. It kept coming and going for a while and the following year spread to another joint. It is much better now, as I religiously stay off all dairy (and mainly stay of gluten too when i can). I was on sulfasalazine for some time, but want to try for a family, so wanted to be off drugs to do that - hence why I decided to try changing my diet. If I have dairy, it does cause problems (however, even off it, it is aggravated a little by cold etc). Feel free to ask anything about it.

x  

I am SO glad you all posted this--I've had the exact same symptoms for 10 months and thought I was losing it! Has anyone seen a rheumatologist? I started seeing one in October and couldn't believe all the things she found with her speciality in auto immunity that other doctors miss. Joint pain/swelling, lungs, skin, it's all related to our faulty UC immune systems and makes us 10x more susceptible for other autoimmune type disease. The first thing on the questionnaire I had to fill out was "do you have Chrons or colitis". She fixed in 5 minutes some inflammatory joint pain I've had for years that I thought was "just age".  Same with suggesting getting checked for the lung issues for the same reasons (havent done that yet). Anyway, just a suggestion--I was kind of in awe of how much Rheumy's can piece together from looking at fingertips and skin, and how little other doctors--even specialists--are aware of autoimmune manifestations. 

I agree, rheumatologists are very good at that! My new surgeon won't let me ask about anything that isn't related to my pouch, which is a shame, as he is the person that should have the best insight into what other problems people with UC have. I just get "That's not my area!" 
Had my CT results back today by letter - it was clear. Have an appointment in January with the pulmonary department again, but no idea what the next steps are. I think they are just going to say " It's just a cough - deal with it!" Which is rather frustrating! 

I had my J Pouch since 1996 I am now 57 courtesy of UC. Out of the blue  about 7 years ago. I  developed a morning chronic cough, about 45mins to 60 minutes after I am upright every day. I go threw a half box of tissues clearing thick mucus out of throat  gagging this goes on for about  45mins , only happens daily in morning have had a couple of bouts only again while upright during day also. Thankfully not while lying flat or sleeping only on waking & about 1 hour after upright like clockwork. Had a bundle of tests on lungs Sputum etc. The only outcome was mild bronchiectasis . It has gradually got worse so i doubt is mild anymore. During day after clearing all the crap breathing is perfect can take huge deep breaths , workout hard etc with absolutely no issues, sometimes i may spit a bit of phlegm . So this only seems to be  a very regular morning issue.

Has anyone had a similar experience. Thanks.

Hi Terry, yes. I have these EXACT same symptoms and been through every test imaginable. Sadly there is a strong link between UC and lung complications. You can google around and find reputable studies. I’m finally with a great pulmonologist that has dozens of UC patients with this exact same lung issue. It’s basically endobronchial UC. UC in the lungs. After colectomy the immune system can attack the lungs. Lungs and colon are very similar tissue and share the same embryonic origins. My bronchoscopy showed lung inflammation that was identical to my colonic inflammation pre jpouch. I take a 2x daily steroid inhaler called Qvar that has mostly put it into remission. Viral infections and bad pollution are a trigger for me. Right now my inhaler isn’t working as well but it still drastically decreases the amount of mucus I produce and I hardly cough during the day, just ran 3 miles yesterday. My lung function tests have remained good. Winter is the worst. In the Spring and summer I’m often in total lung remission. I’ve dealt with this for maybe 4 years now. You need find a doc that understands the lung/UC link because steroid inhalers are not standard treatment for bronchiectasis, they hardly work for that, however inhaled steroids are the established line of treatment for the issues we are facing. You may need to try a few inhalers before getting to one that works, but they work slowly. I didn’t see improvement till about 4-6 weeks of being on Qvar which is normal. I hope this helps.

The steroid inhalers vary in what particle size they spray, which affects where in the bronchial tree the medication deposits. I tried a variety until I found Alvesco, which has done the trick for a few years.

I eventually got a diagnosis of asthma, but it’s nothing like typical asthma, just a wet cough that won’t quit without successful treatment.

I have had a chronic nonproductive cough for around 8 months secondary to pneumonia. I was put on various steroid inhalers that didn’t help. Now they have me on 2 different kinds of nasal sprays - one a steroid anti inflammatory and the other a decongestant. The cough has improved. Not 100% and is aggravated when I talk a lot which as an attorney I have to do. Because it’s what we do.

Just to update I've had terrible joint pain now for 15 or so years , hips lower back & now hands last few years. Decided it was just luck of the draw & middle age.

Joint pain got to a stage a few years back where what sleep i was getting was hugely comprimised with pain. So i was referred to a Rheumatologist after various scans etc which confirmed Sacriolitis grade 4  - Ankylosing spondiylitis-& everything else ending in itis. I was put on humira well 3 days after first injection  never felt anymore pain or flareups ever since . I t has now been 18 months , reviews are not good on this drug -but for me it works - however i stretch my injections out. Inflamation markers in all blood tests still massive. For all i have gone through i am eternally greatful  to be able to sit on a toilet rather than kneel.

Another thing that may help some of you new J Pouchers- Butt burn is easy after passing a BM wipe your Butt with a warm watered facewasher. No more burn or at least bearable.

Anyhow will catch you all on the roundabout.

A few weeks before my surgery to remove my colon, I developed a cough and then had congested sinuses. The cough meant that my surgery might be cancelled, and I didn't want to go through the emotional prep again, so when my doctor recommended that I use a nasal flushing remedy, I did and it cleared out my sinuses in a day. It was amazing (and gross) what is flushed out of the nostrils when congested by a cold or infection. I was able to breathe freely and my cough cleared up. The surgery went ahead as planned. I bought the kit from Costco pharmacy for around $20, but they are always found in drugstores too. 

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