Need help with gut issues - feeling discouraged.

Posted by shooei @shooei, Dec 12, 2020

I know this too will pass, but I am struggling and looking for anyone with similar symptoms and/or maybe some tips to offer.
I have MAC/Bronchiectasis. Bronch is mild to moderate, but hasn't really changed much in over 4 years. I do faithful airway clearance along with my 7% saline, never been on the big 3. Take only NAC, famotidine 10mg 2x/day, Ion gut health probiotic, and some Pepsin GI. I have always had some IBS as well as GERD, but this seems different. I have been dealing with pressure in my upper center and left gut/stomach. It is very high and feels like someone has a fist pressed into my stomach & diaphragm. It is painful and exhausting pressure/crampy. When it is really bad I get overall muscle weakness & fatigue, sob, increased pulse rate, unable to eat, and frequent stools (sorry for the oversharing). Overall just feel weak & I told my husband I feel like I'm gonna die (ok, I MIGHT be a little overly dramatic 😉 ). This last severe bout, I also noticed it was at the same time as I was having more green & yellow sputum and more volume of sputum. My diet is SUPER restricted after having suffered bouts of this for the last 4 years and thinking it is food caused. I don't do any wheat, dairy (except for some hard cheese – zero sugar grams), gluten, sweets, mostly a low FODMAP. Interestingly, this all started at the same time as when I was finally diagnosed with MAC/Bronch and was having some hemoptysis. I have had full blood work twice for these issues (once just last week), and everything comes back totally "normal" (except I have high bilirubin from Gilbert's disease, which is a non-issue), and this last time I had low glucose, probably because I hadn't eaten much for a couple of days.

Questions: I know the gut-lung axis goes both ways – gut can affect lungs, lungs can affect gut. Do any of you feel gut symptoms get exacerbated with flare-ups of MAC/bronchiectasis? I don't think I really know what an "exacerbation" feels like for me – sometimes I just feel worse than others, and it ALWAYS seems to include my stupid gut issues. Could they be connected? My pulmo doc just has zero suggestions, and doesn't think there is a connection. At these times, should I be having a sputum sample checked? Any shared symptoms, suggestions, bad jokes……anything appreciated!! Thanks so much!

I was diagnosed with Mac earlier this year and also have GERD/Refulx. Last month I went to National Jewish and saw Dr Huitt. She thinks my Mac is from the Reflux. She believes if I make some changes in my diet and lifestyle it will go away on its own without treatment. Some of the big changes are ….no sleeping on my right side, no more than 6 ounces of fluid per hour, no drinking or eating 3 hours before bed, no bending over, sleep with my bed elevated 30/40%. The diet is pretty simple but strict. No Caffeine, chocolate, mint, red sauce, fried foods, high fat foods, etc. The best thing I ever did was to go to National Jewish for a consultation. They check out everything and try to find out the reason you got Mac. Hopefully I can get rid of this without taking antibiotics.

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Shooei, This may be a total non-starter for your situation but has any consideration been given to experimenting with a daily ounce or two of a fermented food? Don

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Hi @pop55 , sounds like you received good news from National Jewish – that's terrific! I would like to go, but travel and the expense is not possible for me right now. I have been doing all of those recommendations for the last 3 years – no eating/drinking after 6:30, elevated bed, only sleep on my back, and my diet is pretty compliant = boring 🙂 . It would be nice to be evaluated for my specific issues…..hopefully someday soon. Hope you let us know if you clear MAC without treatment!

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@thumperguy , I believe that is a good thought. Before all of this, I used to eat sauerkraut, pickles, and the like frequently. I have been very afraid to try anything different in fear of bringing on an "episode", but clearly I haven't figured this out yet, so I need to try something new. I think I will start very small and give it a try. Thanks!

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Bad Joke Shooei? Try this. Horse walks into a Bar. Bartender sez, “Why the long face?”

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😛 hahaha – thanks @thumperguy . I would have been disappointed if you hadn't served up a bad joke!

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When I learned about the importance of maintaining a robust gut microbiota along with the “gut/lung axis “ I went on a tear and learned how to ferment my own kimchi. I eat an ounce or two daily. Don’t know if it helps but I kinda like the stuff. Try to make it with less than specified quantity of salt. Don

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@pop55

I was diagnosed with Mac earlier this year and also have GERD/Refulx. Last month I went to National Jewish and saw Dr Huitt. She thinks my Mac is from the Reflux. She believes if I make some changes in my diet and lifestyle it will go away on its own without treatment. Some of the big changes are ….no sleeping on my right side, no more than 6 ounces of fluid per hour, no drinking or eating 3 hours before bed, no bending over, sleep with my bed elevated 30/40%. The diet is pretty simple but strict. No Caffeine, chocolate, mint, red sauce, fried foods, high fat foods, etc. The best thing I ever did was to go to National Jewish for a consultation. They check out everything and try to find out the reason you got Mac. Hopefully I can get rid of this without taking antibiotics.

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Did she do tests to establish GeRD? I know of several people who had same diagnosis frpm NJH from her but never actually had prof of GERD

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@goddard

Did she do tests to establish GeRD? I know of several people who had same diagnosis frpm NJH from her but never actually had prof of GERD

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Yes, I have a mild case of Barrett's Esophagus which had recently been confirmed with a endoscopy. I also think it was a process of elimination since all of my blood work and tests did not show anything else. Did any of those people actually get rid of Mac without the antibiotics?

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Wow.
I think 3 sputum samples are always a good move

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Hmm, it sounds like you're doing everything I would suggest. I will say, once I was off the Big-3, it was months before I could eat without pain and/or nausea. I managed to get through it all be eating tiny amounts of food every 2 hours, whether I wanted to or not. I often made a pitcher of protein smoothie, filled with whatever fresh fruit/veg I could tolerate as well as juice and kept it in the refrigerator, then poured 4oz at a time & drank it. My daughters cannot have dairy, so they substitute another "milk" for the Greek yoghurt I used. My friend uses goat milk kefir (fermented liquid yoghurt) in her smoothies.
It certainly would seem reasonable to have sputum tests done to determent the severity of your MAC, and whether there are any other infections like pseudomonas. Since your gut issues have persisted so long, have you consulted with a gastroenterologist to try to get a complete diagnosis?
Sue

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@sueinmn

Hmm, it sounds like you're doing everything I would suggest. I will say, once I was off the Big-3, it was months before I could eat without pain and/or nausea. I managed to get through it all be eating tiny amounts of food every 2 hours, whether I wanted to or not. I often made a pitcher of protein smoothie, filled with whatever fresh fruit/veg I could tolerate as well as juice and kept it in the refrigerator, then poured 4oz at a time & drank it. My daughters cannot have dairy, so they substitute another "milk" for the Greek yoghurt I used. My friend uses goat milk kefir (fermented liquid yoghurt) in her smoothies.
It certainly would seem reasonable to have sputum tests done to determent the severity of your MAC, and whether there are any other infections like pseudomonas. Since your gut issues have persisted so long, have you consulted with a gastroenterologist to try to get a complete diagnosis?
Sue

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Thank you Sue! I did see a gastroenterologist a couple years ago, but it definitely wasn't the right one. They did an upper endoscopy, tried a med, and then offered to take my gallbladder out and sent me on my way. Makes you not too excited to try again, but I definitely need to.
I have an appointment with my pulmo coming up, so will ask for sputum tests. They haven't done any since diagnosis and they never could tell me bacterial load/count, and said that is not done. I will push to see if they can send to a different lab. If I didn't have all of you saying some of these things are necessary & possible, I wouldn't know what to ask for so thanks to everyone here!!! I'm sure I am known as the "problem patient", but I'd rather be that and get the right care!
Thank you!
sherri

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