After a decade battling UC and trying pretty much every drug available, Remicade, Humira, Immuran, ASA drugs, steroids etc, I had my Jpouch surgery 6 years ago and have been healthier than ever (with the exception of a blockage or 2). Surgery was the best decision I made for my UC. I literally stopped thinking about being sick for 6 years, did well in my career and now have a wonderful wife and 2 daughters.
Until this past January.
While traveling for work in the South Pacific I contracted some mysterious digestive infection and not kidding, almost died from dehydration while in a clinic there. They had very limited medical care. I finally made it onto a flight and was started on Levaquin and Flagyl for 3 weeks, and never found out what I had contracted. My beleved GI was actually furious that I had not been tested before starting the antibiotics. The drugs cleared up the infection but I developed a chronic daily cough with purulent green sputum. Like really thick infected looking green chunks every day. The antibiotics completely leveled me and I have been functioning at about 65% of my usual self for almost 10 months now. Gotten thrush, strep, an unrelated concussion and generally been unwell. I could tell it was in my lungs from the start. I have pretty solid body awareness after close to two decades of battle with UC but literally every doctor I saw told me not to worry and this was either acid reflux or sinus related. I have now jumped through every hoop you can dream of. X-rays, scopes, and CT scans of every body part. Still coughing! Monthly sputum tests. Still coughing. Been tested for HIV, TB, you name it.
I have been completely frayed psychologically and emotionally by this. I think I may have some sort of PTSD at this point. Not the battlefield kind, and not trying to diminish the experience of any Vets here. My dad is a Vietnam Vet but I can't sleep, non stop nightmares, panic attacks, general constant anxiety and just overall twitchy.
I've been reading lots of medical literature and am now suddenly aware that us IBDers are at an increased risk for pulmonary disease and this kind of extraintestinal complication is not at all uncommon. Plus all these drugs add to the lung risks! Anyone else dealing with similar pulmonary disease????
I am now on my 3rd Pulmonologist who is the clinical director at National Jewish Respiratory at Mt. Sinai. He is is great. Finally acknowledging the UC/lung connection and has other similar patients. A past sputum sample has tested positive for mycobacterium avium complex (MAC) so he wanted to do a bronchoscopy which I just had done two days ago. He also actually looked at my CT scans with attention and says I have some mild Bronchiectasis.
I thought I would be asleep for the procedure but turns out not and I guess I freaked out during the procedure, felt like I was suffocating and choking so they put me under. Not fun.
They found some nodules in my lungs and now I'm waiting up to a month for the results. Really hoping it's.l not Cancer or MAC. MAC is extremely hard to cure. It takes a year to 2 years on 3 antibiotics and treatment can fail and relapse is common.
I'm really trying to stay positive while waiting on results but pretty unhinged at the moment. Any advice is appreciated!
