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Need help with gut issues - feeling discouraged.
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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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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5 ReactionsOh. And so far I am pretty much able to eat everything!
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2 ReactionsWhen you tried the Mullein stronger what do you mean by Boomerang effect?
Benedryl was prescribed as an anti-inflammatory measure. It did thin mucus in my lungs and sinuses, but 8-10 hours later, mucus that was even thicker, and sticky, formed. My initial reaction to Mullein tea had a similar boomerang effect but much milder. I'm starting out with a weaker dosage and will increase it if I build tolerance. The chronic inflammatory response is a silent killer, and I am grateful that, for now anyway, my body is calming down.
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1 ReactionI see, thanks. I have this reaction to things all the time. I say they "backfire" on me. At first they help and then usually the next day things can get worse. Or if I try a remedy even more than once a week. I always assumed this was some sort of autoimmune response. I suppose chronic inflammatory response is the same thing?
Pretty sure these are not quite the same thing The signaling molecules that jump-start an acute inflammatory response are the same, but with chronic inflammation, they just keep on activating immune fighters that flood the body, one month after another, like too many Chicken Littles run amok. My goal is to calm down the chicken house.
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1 ReactionI am going to try it. Why not ?
hi, my name is Pam , I read your discussion on Gut issues. I also have very similar problems like yourself, I too have Mac bronchiectasis for over four years and since then I’ve had the same Gut issues very tight feeling feels like someone is pushing against my stomach .. I’m really not good with computer texting. I would like to speak with you if you wish to do so, possibly by phone.. if you could respond I would greatly appreciate it .. doctors don’t always have the right answers,!!! looking to hear from you and thank you
so much 😊🙋♀️🤙🏻😎
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1 ReactionHi Pam, My Mayo doctor said to raise the head of my bed 4-6" off the floor so it is at a slant. Takes some getting use to but helps with the stomach reflux at night. Also, if you are taking the Big 3, maybe play around with the times of day you take it. Good luck. Carolyn
This week, after dealing with the gut issues so long, I panicked that it might be cancer; that's how frustrating this issue is, as some of you have experienced the same, and know what I mean. After reading these notes today, it has given me renewed hope! My pulmonary doctor has told me VERY little about MAC; just put me on the Big 3, as most people call it. Ups and downs with that. Stopped them all for several weeks; got worse, back on two of them [my call] but not the Rifampin; too many side effects. I had no idea the MAC could be the cause of the gut issues! Although I also have IBS, but have learned to manage that pretty well. I changed doctors; still nothing, so I plan to see an Infectious Disease doctor ASAP. The Mullein tea sounds hopeful; thanks!!