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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

May I suggest you get a stool test to see whether you have C diff or H pylori . Are you taking the Mac antibiotics because they can cause C Diff. If you do have seed if there’s a new medicine in fact I am taking it called Dificid and it’s the best one out on the market where he probably won’t ever get it again as opposed to vancomycin which was what they were using for a long time I just found out about that and I’m almost done with the Dificid regimen… This is just a suggestion that might not apply to you at all but I hope it helps her you better no if you do have CDF there’s a new medicine in fact I am taking it called Dificid and it’s the best one out on the market where you probably won’t ever get it again as opposed to vancomycin which was what they were using for a long time I just found out about that and I’m almost done with the deficit regimen… This is just a suggestion it might not apply to you at all but I hope it helps you

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@cesaly1

You are not nuts. MAC + bronchiecstasis triggers a CHRONIC inflammatory response from secretory cells in the epithelial lining of your sinuses, eyelids, lungs, the entire gut, etc. I'm so chemically sensitive, even chamomile tea makes me nauseous. My doctors tried the three-prong approach: prescription spray for sinuses (made my nose bleed and my vision blur badly), Benedryl for the lungs (boomerang effect of thickened mucus), and Pepcid for gut (bright orange urine, was pulled off of it immediately. I was living with yukky green gobs. Then someone on this blog or another mentioned Mullein tea. I researched. It has been used for centuries for sinus, eye, lung, AND gut inflammation. Few side effects (don't fondle the leaves, can cause rash in sensitive people, and don't use if pregnant, etc.).
Important to get a good brand with no floral bits or other contaminants, so I ordered from The Kent & Sussex Tea & Coffee Co. First time, I used a full tablespoon of tea leaves in a cup of water. Popped ears, sinuses drained in a thinned-out gusher, and lungs shouted At Long Last, Oxygen! Boomerang effect, though, so I cut to 1 teaspoon steeped in 1 cup boiling water for 30 minutes then added to 6 more cups of water. Keeps in fridge. A cup in morning, a cup before bed. Unbelievable how inflammation has subsided. I could not sleep well before because of stealth reflux. Gut has calmed down and is no longer swollen. Swelling is diminishing even in my 84-yr-old joints. You are in far worse shape than I have been, but I totally understand your despair. This natural remedy may not work for you or others; we all differ in our anatomical and physiological details as well as in our life histories. Mullein tea is working for me. Good luck!

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Did you order the tea straight from England or were you able to find a US distributor?

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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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@isabellad

Did you order the tea straight from England or were you able to find a US distributor?

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Ordered from England and still strained it. Had ordered from Amazon earlier but the "tea" inside the bag looked like black dust, not dried leaves.

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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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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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I’ve read a medical journal article or two about the connection with IBS for some BE patients. More research shows that inflammation in our bodies can affect organs and cause all sorts of issues for some. I agree that is is all linked together. Over 80 % of people for example, with BE also have chronic sinus issues evidently. Wish more doctors were aware of this research.

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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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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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Thank you for the good advice. I am trying, but I have a lot of food intolerance. I know that it would probably help To see a nutritionist. Yes I have been checked for H pylori.

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