1. < MAC & Bronchiectasis

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!

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lauraadam2425 | @lauraadam2425 | Apr 6 5:36am

Hi, I am 77 years old and been diagnosed with MAC Feb of 2022. I was on the big 3 for 9 month but had to get off ethambutol for eye problems and was then put on Arikayce. I just stopped Arikayce after 8 months because of severe coughing and light headedness to the point I was going to pass out. I have continued to be on Rifampin and Azithromcyn with few side effects, luckily no fategue. I am starting Nuzyra 150 mg 2 x a day in place of the Arikayce. Has anyone had any problems with this drug?

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1 reply
reneemc | @reneemc | Apr 6 5:35pm
In reply to @jw87 "I too have been having mysterious pain pressure in my upper abdomen feeling like a band..." + (show)
@jw87

I too have been having mysterious pain pressure in my upper abdomen feeling like a band around my chest. The pain seems to originate from my stomach, but no one seems to know what’s causing it. I did think it was anxiety and I am on hydroxyzine for that, but I am still, not sure because it comes on for no reason and even though I am on my medication.
🤷‍♀️ My symptoms are very similar to yours such as fatigue, Extreme shortness of breath, pain pressure in my upper abdomen. Sometimes I just get it like a squeezing of my stomach. Very difficult to tolerate. I hope you find answers.

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I have felt like there is a tight band around lower lungs for the last year

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reneemc | @reneemc | Apr 6 5:39pm
In reply to @lauraadam2425 "Hi, I am 77 years old and been diagnosed with MAC Feb of 2022. I was..." + (show)
@lauraadam2425

Hi, I am 77 years old and been diagnosed with MAC Feb of 2022. I was on the big 3 for 9 month but had to get off ethambutol for eye problems and was then put on Arikayce. I just stopped Arikayce after 8 months because of severe coughing and light headedness to the point I was going to pass out. I have continued to be on Rifampin and Azithromcyn with few side effects, luckily no fategue. I am starting Nuzyra 150 mg 2 x a day in place of the Arikayce. Has anyone had any problems with this drug?

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I was on Omadacycline for 7 months. No problems or side effects. That was for the abscessus . Now just treating the MAC

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pacathy | @pacathy | Apr 7 7:24am
In reply to @becleartoday "Dear Shooei, I’m so sorry to hear that you’ve been unwell. There is a lot of..." + (show)
@becleartoday

Dear Shooei,

I’m so sorry to hear that you’ve been unwell. There is a lot of ongoing research on the gut-lung access. I think we are going to have to be patient to know more about how they interact. With that said, I can’t wait to learn more from these studies as I, too, have IBS.

In the meantime, you might want to think about eating more fermented foods, such as kefir, kombucha and sauerkraut and pickles that require refrigeration.

Also, has your doctor checked for h. Pylori?

If you want to work with nutritionist, Michelle MacDonald, who is the nutrition supervisor at National Jewish Health, also has a consulting business. She’s a tremendous resource for the bronchiectasis and NTM community.

Best,
Linda Esposito

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The suggestion from Linda and Bonnie to get checked for H pylori is a great one. I had a lot of bloating and burping for at least several years and got tested and treated about 12-14 years ago, well before my lung issues. The difference after treatment was remarkable.

If you’re on long term AB’s, Bonnie’s thoughts about C Diff are also great.

Lastly, keep in mind that cardiac issues can present with GI symptoms. The “tight bands,” shortness of breath, extreme fatigue and squeezing symptoms warrant checking out if you haven’t.
Gall bladders can also cause upper GI symptoms.

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shooei | @shooei | Apr 8 8:59am
In reply to @roisin11 "Sherri, I have been working with a functional integrative MD and I am experiencing significant benefits..." + (show)
@roisin11

Sherri, I have been working with a functional integrative MD and I am experiencing significant benefits from that. I agree that some of us have sensitive, intestinal tracts! But I don’t give up, eating, and dining and enjoying meals is a worthy goal and a lifelong process 😊

After six months of treatment for SIBO, I’m no longer losing weight, and the chronic diarrhea has completely resolved. I am also dairy and gluten free and currently following an anti-candida diet, which is mostly an anti-inflammatory diet with complex carbs.

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Thanks @roisin11 ! I have been to functional med & also did treatment for SIBO. I am also dairy & gluten free, which I think does at least help.

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shooei | @shooei | Apr 8 9:04am
In reply to @irenea8 "For me there seems to be a connection between my intestines and lungs. When my intestinal..." + (show)
@irenea8

For me there seems to be a connection between my intestines and lungs. When my intestinal symptoms are not as bad it seems my lungs are not as bad or perhaps I am able to tolerate the lung infection better. My pulmo also does not think there is any connection. Your symptoms sort of sound like bouts of IBS. It is a vague diagnosis but can be very bad for some people. I am pretty sure I have chronic IBS but I also feel if I could get my lung infection knocked back that the intestinal situation would improve. They do seem interconnected.

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@irenea8 - totally agree when my guts are worse so are my lungs and vice versa! I also have come to the conclusion that it is just a new version of IBS symptoms that I am particularly sensitive to.
Thanks!

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shooei | @shooei | Apr 8 9:07am
In reply to @dreher "I, too, have real trouble with IBS. I also have MAC, but don’t see a connection...." + (show)
@dreher

I, too, have real trouble with IBS. I also have MAC, but don’t see a connection. I have read a number of posts that discuss the lung/gut connection, so asked my gastroenterologist what he thought. He said there’s a connection with many organs and had no real suggestions about what I might be able to do or take to help. He knows I have struggled with IBS since 2003 and it has gotten pretty rough for me. It bothers me daily and MAC doesn’t seem to interrupt my life except when I get a bad cold or flu. I do the saline and nebulizer every day as well as other cautionary measures to prevent a set back. It’s the gut issues that hurt my quality of life. I keep hoping I can find something that will help the bloating, gas, diarrhea, constipation, accidents, cramps etc. I wish I could suggest something to help you, but I’m also searching!! Good luck and keep us posted if you find help!

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@dreher -"It’s the gut issues that hurt my quality of life. " - I completely agree with this statement!🤗 I'm not sure there is a solution, so I am trying to take advantage of those good days when I have them!!

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shooei | @shooei | Apr 8 9:13am
In reply to @becleartoday "Dear Shooei, I’m so sorry to hear that you’ve been unwell. There is a lot of..." + (show)
@becleartoday

Dear Shooei,

I’m so sorry to hear that you’ve been unwell. There is a lot of ongoing research on the gut-lung access. I think we are going to have to be patient to know more about how they interact. With that said, I can’t wait to learn more from these studies as I, too, have IBS.

In the meantime, you might want to think about eating more fermented foods, such as kefir, kombucha and sauerkraut and pickles that require refrigeration.

Also, has your doctor checked for h. Pylori?

If you want to work with nutritionist, Michelle MacDonald, who is the nutrition supervisor at National Jewish Health, also has a consulting business. She’s a tremendous resource for the bronchiectasis and NTM community.

Best,
Linda Esposito

Jump to this post

Thanks Linda! Yes, so much good research going on, I am hopeful! I used to ear a lot more fermented foods before everything just went downhill - I will look at carefully adding these back.

Yes, I've been tested for H Pylori - negative. I do have a nutritionist but one that also understands NTM may be more helpful. I will look her up. Thanks for the info!!

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irenea8 | @irenea8 | Apr 8 9:24am

Been reading up on something called BAD or bile acid diarrhea. They say many of the people told they have IBS-D actually have BAD. BAD can be caused by many different things including SIBO or Pancreatic insufficiency or bacterial etc. No clear connection to lungs but it is all inter connected so I still feel one affects the other if not clearly caused by.

Do the bacterias in our lungs get into our digestive track? We must swallow some amount of the infected sputum?

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mcdc1959 | @mcdc1959 | Apr 9 10:27am

I totally agree that our guts are related to our lung issues or vice versa! Have eosinophil pneumonia and my gerd is going crazy right now !

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