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.

@poodledoc

Hello @shooei, Did the GI doc say why he wanted to remove your gallbladder? I just read your original post and I think some of your symptoms could be gallbladder related. You are doing a lot of good things to keep the Bronchiectasis/MAC under control. You might try adding Mucinex along with NAC. As far as diet if you are eating animal protein you could eliminate the Famotidine and Pepsin from your regime by going with a WFPB diet (whole food plant based). Regarding the lung-gut axis question it is proven that reflux/aspiration can definitely contribute to lung problems. I don't see how lung issues could cause gut problems unless of course you are taking antibiotics for the MAC. Just my 2 cents worth. Bill

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Hey @poodledoc , My EF was just slightly high & he said he had patients who felt way better after their gallbladder was removed - that was after they exhausted other possible issues, even if their numbers didn't specifically indicate removal. That's just not enough for me to want to opt in to surgery!
I don't do animal protein (well, I guess except for some hard cheese), so I guess I'm pretty much WFPB. I have not tried Mucinex. Is that a liquid? I think that is worth a try!

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@shooei

Hey @poodledoc , My EF was just slightly high & he said he had patients who felt way better after their gallbladder was removed - that was after they exhausted other possible issues, even if their numbers didn't specifically indicate removal. That's just not enough for me to want to opt in to surgery!
I don't do animal protein (well, I guess except for some hard cheese), so I guess I'm pretty much WFPB. I have not tried Mucinex. Is that a liquid? I think that is worth a try!

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@shooei Mucinex is a brand name of guaifenesin. It helps thin mucous in your damaged bronchial tubes making it easier to clear it out with your airway clearance techniques. If you try it be sure to get the formula without DM (cough suppressant). I take an extended release tablet formula along with a NAC (N-acetylcysteine) tablet first thing every morning with a large glass of water. Getting that mucous/sputum out is so important for us with bronchiectasis.

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Hi schooie..have you done a recent sputum and culture just to make sure you have t picked up another bacteria

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@shooei It does sound like gall stones. I, and just about everyone in my family), had gall stones. Because I had/have a good diet, I was the oldest to have my gall bladder removed. I used to think it was my GERD or a stomach ulcer bothering me. I would get an attack of cramps/pain in the middle of the night so bad that I just would lie curled up on the floor in agony for about 20 minutes until it went away. (I would try to throw up. Sometimes it worked, sometimes not.) It would sometimes go away as quickly and completely as it came. (Supposedly, I passed the stone.) The last couple of times I had a week or more of constant back pain after the cramping episode. With the last back pain, I finally went to my doc, who sent me to the ER for an ultrasound. They sent me directly to the hospital and my biliruben was high from a stone plugging my bile duct. When I had the laproscopic surgery, the surgeon said my gall bladder was "filled with about 500 stones." I had one attack after the surgery, but now I'm painfree--at least from that issue :-).

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@megan123

Hi schooie..have you done a recent sputum and culture just to make sure you have t picked up another bacteria

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@megan123 , I have not had a sputum culture in forever, but will ask for one as I have a pulmonology appointment coming up. Thank you!
sherri

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@shooei I tried taking proton pump and H2 blockers for my GERD symptoms several years ago, but they gave me tremendous headaches--the stronger the drug, the worse the headache. The pain from them became so bad I literally wanted to die. Some doctors think the problem of bloating, belching (GERD symptoms) is not too much acid, but not enough, especially with older people like myself. (I'm 73. You look much younger.). Since my gallbladder surgery, I've been taking NOW Super Enzymes with dinner, which has betaine HCl and pepsin to increase stomach acid and help digestion.

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@lorifilipek

@shooei It does sound like gall stones. I, and just about everyone in my family), had gall stones. Because I had/have a good diet, I was the oldest to have my gall bladder removed. I used to think it was my GERD or a stomach ulcer bothering me. I would get an attack of cramps/pain in the middle of the night so bad that I just would lie curled up on the floor in agony for about 20 minutes until it went away. (I would try to throw up. Sometimes it worked, sometimes not.) It would sometimes go away as quickly and completely as it came. (Supposedly, I passed the stone.) The last couple of times I had a week or more of constant back pain after the cramping episode. With the last back pain, I finally went to my doc, who sent me to the ER for an ultrasound. They sent me directly to the hospital and my biliruben was high from a stone plugging my bile duct. When I had the laproscopic surgery, the surgeon said my gall bladder was "filled with about 500 stones." I had one attack after the surgery, but now I'm painfree--at least from that issue :-).

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@lorifilipek , Interesting! I did have an ultrasound and ejection fraction tested 2 years ago for gallbladder and they did not say they saw any gall stones at that time. I don't know if an ultrasound is definitive? And, interestingly, I also have something called Gilbert's Disease which doesn't cause any symptoms but the lack of a liver enzyme causes high levels of bilirubin in my blood - which I believe could also cause gall stones. Maybe I need to repeat that ultrasound.

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@lorifilipek

@shooei I tried taking proton pump and H2 blockers for my GERD symptoms several years ago, but they gave me tremendous headaches--the stronger the drug, the worse the headache. The pain from them became so bad I literally wanted to die. Some doctors think the problem of bloating, belching (GERD symptoms) is not too much acid, but not enough, especially with older people like myself. (I'm 73. You look much younger.). Since my gallbladder surgery, I've been taking NOW Super Enzymes with dinner, which has betaine HCl and pepsin to increase stomach acid and help digestion.

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@lorifilipek , It is actually a really good thing your body wouldn't let you take those!! My GP left me on a PPI for 18 years 🙁 , which in itself has probably messed with my guts.
I keep toying with this idea of low acid. I developed GERD during pregnancy and it has never left, which makes me think it is probably not low acid but structural but I don't know that. (I did get a small hiatal hernia, which I still have.) I have been to a functional med doc, and did the betaine HCI challenge. I did not get rid of the GERD and did not feel better with that challenge, although I may not have given it long enough and I was super stressed at that time, which I'm sure didn't help.
Do you have relief now from GERD with the NOW Super Enzyme? Did you have a diagnosis of low acid, or your response to the challenge is how that was determined?
I sincerely appreciate the feedback. It has made me aware there are a couple things I need to revisit and I have a list for my upcoming doctor visits (they'll be so happy to see me 😉 ). BTW, I just turned 60, so I'm sure I'm considered "older people" now too 😛 .
Thank you!
sherri

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@shooei

@lorifilipek , Interesting! I did have an ultrasound and ejection fraction tested 2 years ago for gallbladder and they did not say they saw any gall stones at that time. I don't know if an ultrasound is definitive? And, interestingly, I also have something called Gilbert's Disease which doesn't cause any symptoms but the lack of a liver enzyme causes high levels of bilirubin in my blood - which I believe could also cause gall stones. Maybe I need to repeat that ultrasound.

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@shooie Hi Sherri, I recently had my gall bladder removed in August. I believe the ultra sound is the way they determine any problems. I didn’t have any stones either. Two years ago I was experiencing the same pain you described, except the sharp pain was on my right side, up under my ribs. I had the ultrasound and they said “no stones, just sludge”, but I also had a 4mm polyp. The pain came and went over the past 2 years, nothing REALLY unbearable. Then this July it was very painful!! With vomiting and diarrhea. Went back for ultrasound, still no stones, just sludge, but the polyp had increased to 8mm. So I opted for surgery. I also take a probiotic, Renew Life, for immunity and respiratory health. Still have some digestive issues every once in a while. I think my body is trying to learn how to function without a gall bladder. Lol. So, short answer with a long story — I wouldn’t rush to remove gall bladder if ultrasound doesn’t show any stones, sludge or anything else, and try adding the probiotics or fermented foods as suggested.
Good luck
Gina

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@ginak

@shooie Hi Sherri, I recently had my gall bladder removed in August. I believe the ultra sound is the way they determine any problems. I didn’t have any stones either. Two years ago I was experiencing the same pain you described, except the sharp pain was on my right side, up under my ribs. I had the ultrasound and they said “no stones, just sludge”, but I also had a 4mm polyp. The pain came and went over the past 2 years, nothing REALLY unbearable. Then this July it was very painful!! With vomiting and diarrhea. Went back for ultrasound, still no stones, just sludge, but the polyp had increased to 8mm. So I opted for surgery. I also take a probiotic, Renew Life, for immunity and respiratory health. Still have some digestive issues every once in a while. I think my body is trying to learn how to function without a gall bladder. Lol. So, short answer with a long story — I wouldn’t rush to remove gall bladder if ultrasound doesn’t show any stones, sludge or anything else, and try adding the probiotics or fermented foods as suggested.
Good luck
Gina

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@ginak , Gina - I appreciate you taking time to share your gallbladder journey. I hope your gut continues to improve! I have begun adding fermented foods back to my diet, so we'll see how that goes.

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