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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lorifilipek | @lorifilipek | Dec 18, 2020

@shooei Unfortunately, I lived on Tums in my younger years. I too have a small hiatal hernia. I’ve never been tested for low acid. The NOW Super Enzyme helps normally, but sometimes when I have too much beef I still get indigestion. I should probably try a larger dose betaine HCl challenge. I’ve been a scientist for over 50 years, yet for my health, I experiment on my own, rather than with a doctor because I’ve had several bad experiences with medical doctors (both mainline and naturopaths). Sometimes my experimenting has been good, but, once, very bad. (i.e. I got endometrial cancer because the amount of progesterone cream I used for many years wasn’t enough to balance the estrace I took for my bones. I can’t take Fosamax because it burns my esophagus.) I’m being good at the moment. I just set up a virtual appt with my ID doctor. (You're no where near as old as me!)

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Granny | @goddard | Jan 22, 2021
In reply to @pop55 "I was diagnosed with Mac earlier this year and also have GERD/Refulx. Last month I went..." + (show)
@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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How does she say the MAC "from reflux"? Is it that you are causing bronchiectasis from Refulx and that is encouraging MAC? I thought once you scarred your lungs and got bronchiectasis it stayed with you. Can you actually improve bronchiectasis or just stop it from increasing?

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cwal | @cwal | Oct 30, 2023
In reply to @migizii "Are you saying the Mayo labs are unable to determine specific bacteria or bacteria load?" + (show)
@migizii

Are you saying the Mayo labs are unable to determine specific bacteria or bacteria load?

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I don't see where anyone had an answer for your question about Mayo? Did you find an answer to that?

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dreher | @dreher | Oct 31, 2023

I’m sorry you are having these problems. Thank you for your post. It helped me understand that one of my serious problems is shared by others. I, too, have had reflux for decades. I’m taking Prilosec once a day, but have taken lots of RX drugs for reflux and had Nissen Fundoplication surgery 2003. Helped, but didn’t completely stop some reflux. After that surgery, I began to have IBS. It came and went, but has been constant for the past 10 years. Keeps me at home a lot. Painful at times. Always looking for a bathroom. My pulmonary doctor hasn’t talked abt any connection. I’m seeing my Gastroenterologist tomorrow, I’ll ask him abt the MAC and gut connection. I hope he can have some relief for the gut issues! I hope you find relief!

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libby2 | @libby2 | Oct 31, 2023

It sounds like you’re doing all the right things. I would maybe try an ultrasound.
I don’t know enough on gastro to know what that much pain / ibs could be.
Have you been to a Gastrointestinal Doc lately?
Hope you’re better soon.
Maybe a food log ? See what “ could “ be the culprit?

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mayocarlost | @mayocarlost | Nov 2, 2023

Hi, I Hope I’m not late with my comments. What you described was happening to me, every other day that I was sick I was loosing weight, pain on the upper side of the stomach and especially after I finished BM. But now my situation improved, what I did is this:
Keep eating to maintain proper nutrition.
Continue with your medication, but if you can eliminate what you don’t need talk to your doctor.
Exercise and relax if needed naps.
Drink to hydrate always.
See your Gastro so to battle Guerd issues.
In my case, my Pulmonologist and Gastro recommended Remeron pills to help with weight and easy the stomach pain. Probiotic
Adjustable bed. Although I still have some discomfort after BM the pain is less and weight is improving little by little. Hope you’re improving your condition, good luck and let’s continue fighting this journey

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1 reply
mayocarlost | @mayocarlost | Nov 2, 2023
In reply to @mayocarlost "Hi, I Hope I’m not late with my comments. What you described was happening to me,..." + (show)
@mayocarlost

Hi, I Hope I’m not late with my comments. What you described was happening to me, every other day that I was sick I was loosing weight, pain on the upper side of the stomach and especially after I finished BM. But now my situation improved, what I did is this:
Keep eating to maintain proper nutrition.
Continue with your medication, but if you can eliminate what you don’t need talk to your doctor.
Exercise and relax if needed naps.
Drink to hydrate always.
See your Gastro so to battle Guerd issues.
In my case, my Pulmonologist and Gastro recommended Remeron pills to help with weight and easy the stomach pain. Probiotic
Adjustable bed. Although I still have some discomfort after BM the pain is less and weight is improving little by little. Hope you’re improving your condition, good luck and let’s continue fighting this journey

Jump to this post

Hugs 🤗 to you too and have a wonderful day!
Carlos.

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sallyb827 | @sallyb827 | Nov 3, 2023

I have had IBS for close to 10 years now and Bronchiectasis/MAC for 6.
I have eliminated gluten and dairy from my diet. What I have found helpful from my naturopath is a product called Enteragam. My gastro never told me about it because you used to need a script for it. In the past year Enteragam can be purchased without a script online. It is very expensive $105 for 30 packets. Sometimes I need 2 packets a day. I also take a variety of probiotics. With that regimen, I am usually good with no intestinal problems. I can not eat raw vegetables. Everything has to be cooked. If a salad is not properly washed or there is one germ in it my stomach reacts.
@shooei it sounds like you may have some parasites or SIBO. I have had both and it makes everything uncomfortable. If possible, find an MD, naturopath, or functional integrative MD that can work with you on this. You should not have to suffer.
I find those of us with Bronchiectasis/MAC have sensitive intestinal tracks. What someone else eats that has no repercussions for them would turn one of us inside out.
Prayers for finding a solution.

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1 reply
shooei | @shooei | Nov 3, 2023
In reply to @sallyb827 "I have had IBS for close to 10 years now and Bronchiectasis/MAC for 6. I have..." + (show)
@sallyb827

I have had IBS for close to 10 years now and Bronchiectasis/MAC for 6.
I have eliminated gluten and dairy from my diet. What I have found helpful from my naturopath is a product called Enteragam. My gastro never told me about it because you used to need a script for it. In the past year Enteragam can be purchased without a script online. It is very expensive $105 for 30 packets. Sometimes I need 2 packets a day. I also take a variety of probiotics. With that regimen, I am usually good with no intestinal problems. I can not eat raw vegetables. Everything has to be cooked. If a salad is not properly washed or there is one germ in it my stomach reacts.
@shooei it sounds like you may have some parasites or SIBO. I have had both and it makes everything uncomfortable. If possible, find an MD, naturopath, or functional integrative MD that can work with you on this. You should not have to suffer.
I find those of us with Bronchiectasis/MAC have sensitive intestinal tracks. What someone else eats that has no repercussions for them would turn one of us inside out.
Prayers for finding a solution.

Jump to this post

Thank you @sallyb827. I have not heard of Enteragam so will look it up. I do not have parasites (tested) and did treat for SIBO. I think you are right about the super sensitive intestinal tract! I'm presently working with a dietician so we'll see where that goes. These gut issues can get pretty miserable. I appreciate your suggestions & prayers!🤗

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